Chronic burning hip/buttocks pain-

gebrazell Community Member August 05, 2007
  • For approximately 6 years I have suffered with an intense burning pain at the base of my pelvis/buttocks. The pain is intensified and prolonged with significant periods of sitting. Mine is not a mobility issue, just a burning-stinging pain. Taking a trip by auto or sitting in church greatly increases the pain. Five years ago, I was diagnosed with sero-negative, non-erosive, polyarthritis (not rheumatoid, but closely related). This diagnosis was based on a lab SED Rate Test. This year, based on the C-Reactive Protein test, I was told that my factors for the inflamatory type of arthritis are within the "normal" range, and the diagnosis was changed to osteo arthritis. Numerous x-rays of my pelvis have shown no osteo damage. My question is how can I have so much pain, if there is no damage or inflamation? The previous diagnosis of an inflamatory type arthritis seemed to be substantianed by the lack of deterioation of the bones, but now I am confused. Each period of the burning pain becomes more prolonged and intense. I am now being referred to a Neuro pain management specialist. If anyone has had a similar experience or has any helpful information in diagnosing and treating my problem would be greatly appreciated. I take 7.5 mg of Mobic twice daily, but I have doubts that it is helping.
118 Comments
  • CUKIO34
    Aug. 02, 2014

    I have been feeling this burning sensation in my left buttock for about 2 years it doesnt go away at all. Im 34 years old and in great shape. I sit at a desk all day and it aggrivaites it. I have also been feeling a wierd sensation in my face and neck that is not normal. I only mention that because someone posted that the felt the same below. I am going to...

    RHMLucky777

    Read More

    I have been feeling this burning sensation in my left buttock for about 2 years it doesnt go away at all. Im 34 years old and in great shape. I sit at a desk all day and it aggrivaites it. I have also been feeling a wierd sensation in my face and neck that is not normal. I only mention that because someone posted that the felt the same below. I am going to try vitamin D pills and see if they help.

    • ruth
      Dec. 07, 2014
      You could look up neuropathy.I have had this for some time. I am in the uk, You could ask your Doctor for Garapentin it's for nerve pain. Good luck
  • Hanish
    Mar. 23, 2014

    Reading these comments I feel I am not alone. I just 33 years old and my pain started with one night while i was masterba*** 2.5 years ago. there was numbness in the lower abdomen area and since then i have not been able to sit without pain. 

     

    I have pain in my buttock while sitting/lying left/on my stomach. Done lots of MRI and doctors dont see...

    RHMLucky777

    Read More

    Reading these comments I feel I am not alone. I just 33 years old and my pain started with one night while i was masterba*** 2.5 years ago. there was numbness in the lower abdomen area and since then i have not been able to sit without pain. 

     

    I have pain in my buttock while sitting/lying left/on my stomach. Done lots of MRI and doctors dont see anything wrong. Please help. I am so depressed with this that I dont know what to do.

    • nk86
      Dec. 03, 2014
      I was on here searching for similar symptoms because last night I was sitting in the most uncomfortable chair for about two hours while I was waiting to have my car fixed. I could not really go outside because it was freezing. There was no real place to walk around as I was sitting inside of the gas station area where they go in to pay. It is a 24 hour station...
      RHMLucky777
      Read More
      I was on here searching for similar symptoms because last night I was sitting in the most uncomfortable chair for about two hours while I was waiting to have my car fixed. I could not really go outside because it was freezing. There was no real place to walk around as I was sitting inside of the gas station area where they go in to pay. It is a 24 hour station with a 24 hour repair shop. Anyway, the chair had a hump right down the middle from the front to the back of the chair. It was made of hard plastic. While I was sitting I felt deep pain just below my tailbone and off to the side toward my left buttock area. I have had severe burning in the left buttock area ever since. I also have the feeling of deep nerve pain and weakness in my right arm. A symptom that I felt during the middle of the night. I think what happened is that I was sitting in a bad position and pinched a nerve. After researching online it seems that any burning pain is nerve related. I noticed I get relief if I lie down on my right side and avoid the left side. The burning seems to ease. The pain in the arm eases when I use it throughout the day. Taking all this into account tells me that a nerve has become entrapped. I think you may have been laying or sitting in a position that caused pressure on a nerve and maybe didn't notice it because you were preoccupied with what you were doing. Try lying only on your right side and when sitting try to avoid chairs and when sitting on couches sit sideways on your right buttock with your legs to the side, sort of in the fetal position if you know what I mean. I thing this will force your spinal column back into the proper position over time and the nerve will be released. I already have relief just by doing this and my problem started last night. It may take longer for you to get relief since the nerve has been entrapped so long. Just be patient and you will eventually get some relief. I wish you well and hope you make a full recovery soon. God bless.
  • Susan335
    Mar. 03, 2014

    I underwent PRP treatment for tendinosis in one hip.  Within hours, I was in extreme pain in multiple joints.  Three years later, I still suffer extreme pain in both hips and my upper legs.  I've undergone physical therapy-not helpful, chiropractic-not a cure but a definite improvement, acupuncture-not helpful, and tried medications which I cannot...

    RHMLucky777

    Read More

    I underwent PRP treatment for tendinosis in one hip.  Within hours, I was in extreme pain in multiple joints.  Three years later, I still suffer extreme pain in both hips and my upper legs.  I've undergone physical therapy-not helpful, chiropractic-not a cure but a definite improvement, acupuncture-not helpful, and tried medications which I cannot tolerate.  The best temporary relief is using a TENS unit which I recommend highly, ice packs, and move, move, move.  PRP is still considered experimental.  I studied the scientific literature before undergoing treatment.  At that time, the possibility of systemic or more wide-spread adverse effects was thought to be nearly non-existent.  I would try all more conventional options before considering PRP.  For me, I regret that I did it as I may never be pain free again.

  • bro61021
    Feb. 27, 2014

    I have the exact pain mentioned here. I have gotten corti on shots in my left and right SI. This helped a little but the pain continued. I just had an alternative medicine procedure called Platelet Rich Plasma (PRP). This is a new treatment that provides lasting musculoskeletal pain relief. It's only been 2 weeks and the pain is completely gone. Do a search...

    RHMLucky777

    Read More

    I have the exact pain mentioned here. I have gotten corti on shots in my left and right SI. This helped a little but the pain continued. I just had an alternative medicine procedure called Platelet Rich Plasma (PRP). This is a new treatment that provides lasting musculoskeletal pain relief. It's only been 2 weeks and the pain is completely gone. Do a search to learn more and see if it's for you. Insurance may not cover this treatment.

    • smithlanneau
      Aug. 01, 2014

      I just saw the post about PRP and was curious as to how it is going now.  I saw a post right above yours that the person said they had it done and it started hurting and it even started hurting on his other side!  Did you ever have any problem with it?

  • Joe 1365
    Feb. 25, 2014

    I've suffered with the same problems for years.It flames up and won't let go it gets more and more intense. The only you thing that has helped me is a chiropractor who adjusts me on the side and a massage therapist that specifically targets my hip flexers. It takes time but when it starts getting better  I begin working out in water so I don't over due...

    RHMLucky777

    Read More

    I've suffered with the same problems for years.It flames up and won't let go it gets more and more intense. The only you thing that has helped me is a chiropractor who adjusts me on the side and a massage therapist that specifically targets my hip flexers. It takes time but when it starts getting better  I begin working out in water so I don't over due but build strength. It takes effort but I live without medication and most of the time I function well.

  • Anonymous
    kathlo
    Feb. 12, 2014

    I too am experiencing piriformis syndrome symptoms. It started during recovery (3 months after) from knee arthroscopy in May 2013, possibly due to all the sitting with foot up required post-op. It started in the affected hip with burning and discomfort while lying on it. It then spread to the other hip, and then it seemed I felt it in mid-lower back and buttocks,...

    RHMLucky777

    Read More

    I too am experiencing piriformis syndrome symptoms. It started during recovery (3 months after) from knee arthroscopy in May 2013, possibly due to all the sitting with foot up required post-op. It started in the affected hip with burning and discomfort while lying on it. It then spread to the other hip, and then it seemed I felt it in mid-lower back and buttocks, with my toes and even sometimes my fingers feeling tingly. My doc labelled it as "parasthesia", cause unknown. I had another knee surgery in December of 2013, which of course involves lots of sitting post-op as I was in a Zimmer-splint for a month. Presently, I am walking with crutches and am experiencing many of the symtoms mentioned on here; burning lower to mid back, hips, thighs and buttocks which all worsens as the day goes on, especially after sitting. I cannot sit for more than 15 minutes without using a towel-roll under my thighs so that my buttocks don't touch the seat, and using heat or ice. It makes travel a real issue, and I can relate to quality of life being affected and the feelings of anxiety and depression that set in. I do daily stretches of the piriformis, tried Lyrica with some positive results and use deep massage and heat on the piriformis area. My neurologist is presently in the "rule-out" stage - did a nerve conduction test which showed nothing, and actually suggested it may all be due to stress, which definitely is not the case, and was frustrating and condescending to hear! The only stress is trying to cope with the burning that happens daily and worsens as the day goes on. Even trying to relax in front of TV is a challenge as I need to be laying on one side or the other with an icepack on my back and buttock area. I see my neurologist on Friday again and if he's as little help as the last visit, I will ask him to refer me to someone who can help such as a Sports Medicine Doctor. All my symptoms lead me to believe that it is Piriformis syndrome and my Physiotherapist agrees. I'm really hoping it will go away once I recover from this knee operation. I'm too young to retire and my husband and I are big hikers/travelers. I am worried that after reading how long many of you have suffered with these symptoms, that it will be a long on-going struggle. It is a comfort though to be able to relate to, and have others on here relate to the way this can affect ones life and morale. It's hard for family members and friends to relate, and I start to feel as if I come across as a complainer, especially after all my knee issues/surgery. Good luck and I will follow this group - thanks for commencing it! 

  • sic of it
    Feb. 08, 2014

    I have been getting epideural steroid injections for year because of low back pain, a recent MRI revealed arachnoiditis. Look it up and i think you may very well find your problem. Hard to get a doctor to admit this because injections, dyes and so forth are alot of the cause if you have not had back surgery.

  • Anonymous
    Sandy
    Apr. 23, 2013
    I have the exact same pain. It gets worse when I ride in a car, go to bed, sit over 15 minutes and I have had every CTScan, MRI, and X-ray you can mention. If you have found anything that helps let me know. Thanks
    • Anonymous
      Dclark99
      Nov. 13, 2013
      Thought I would also post my story...had similar problems and found relief without over medicating,....punchline is calcium combined with some chiropractic work on various pressure points...hope this helps someone! For the past six years, the pain in my 'butt' got worse and worse. Essentially it would start hurting the moment I sat down and get worse and worse....
      RHMLucky777
      Read More
      Thought I would also post my story...had similar problems and found relief without over medicating,....punchline is calcium combined with some chiropractic work on various pressure points...hope this helps someone! For the past six years, the pain in my 'butt' got worse and worse. Essentially it would start hurting the moment I sat down and get worse and worse. Eventually I came to know the 'butt' as the ischial tuberosity...At first it was just annoying, but eventually it got so bad that I had to have a special memory foam pad that I carried around with me to sit on almost any chair. Finally it got so bad that I bought a special desk that I could raise up so I could work standing up. For several years I was under the 'care' of two orthopedic surgeons (one for hip and one for back). They took x-rays, told me some nonsense about me having bone spurs, etc...and that there was basically nothing I could do except get cortisone shots every few months for the rest of my life (I am 38 and that didn't sound so great to me). I finally pushed them into prescribing physical therapy for me from a great sports therapist - he thought it had to do with either tight hamstrings putting pressure on the tendon at the ischial tuberosity or perhaps bursitis or maybe some sort of nerve problem. Unfortunately after three months of very detailed therapy, my therapist told me he didn't think it was helping and that physical therapy was unlikely to be my solution. I agreed, as any relief that I got was less than a 5% improvement in my pain...no amount of stretching, pressure point therapy, or anything else would loosen up the hamstring which was super tight and obviously part if the problem. That was when I had the breakthrough. I know this sounds crazy, but I went to see a chiropractor that a friend recommended (Greenville Avenue Chiropractic in Dallas) and within 5 minutes of poking around at various pressure points he said 'I think all you need is some calcium'. Evidently, if you are calcium deficient, the blood will drain calcium from your bones and this can interfere with the ability of tendons to properly heal in the normal course of life. In addition, I felt a significant difference immediately after my first session with the chiropractor...probably a 50% improvement. After taking calcium pills (up to about 2000mg per day of any brand of calcium citrate with vitamin D for absorption will do) for three weeks and had three sessions with the chiropractor. I would say I am now 80% improved with constant improvement...if I never got any better I would be fine just and three weeks earlier I was worried about my long term future. However, I believe that over time as the body absorbs the calcium that I am taking my pain will be gone entirely. Literally this has been like a miracle for me. At a minimum try the calcium/D and if you are so inclined, find a good chiropractor to go to as well. I don't know if the calcium would have done the trick or not without the chiropractor, but regardless this is what happened to me. I can tell you with confidence that the typical MD route had nothing to offer me for my pain. Good luck. Ps. An update a couple of years later....for another problem (a golfing injury to my wrist) I was advised to cut back on the calcium for a few weeks and take magnesium instead. Within 2 weeks my pain was back and worse than ever before. I got back on the calcium and two weeks later I was stable again - the flare up was about a 8 out of 10 and now I am back to a pain level of about 2-3 out of 10 which is my norm. I am seeing a nutritionist to see if I can do better, but even with no more improvement the pain level is no longer a major problem. If you opt to take the calcium, make sure to take D as well for absorption (FYI if you do a blood test for calcium it will show up as fine but that is only testing the blood and evidently the problem is in the bones). I would also recommend seeing a nutritionist to get a more refined approach to any supplements that might help. Good luck.
    • Kerry
      Jan. 10, 2014

      I am experiencing excatly the same pain and have also had xrays MRI scans of hip  pelvis and lower back done to no avail. also now get tingling and pins and neddles sensation on my face, arm and neck. had an MRI SCAN OF THE BRAIN AND SCAN DONE NOTHING FOUND

  • Anonymous
    Rob
    Mar. 03, 2013

    Have you ever found a remedy to your butt pain? Have you tried trigger point therapy?

    • Anonymous
      Steve
      Apr. 21, 2013

      What is trigger point therapy and how is it used with this burning butt pain??

       

      I have been suffering with burning pain when I sit for, believe it or not, 40+ years.  I have tried many things, seen many doctors but to no avail.  My burning pain can be anywhere from the back of my upper thighs all the way up to the sacral area and small of the...

      RHMLucky777

      Read More

      What is trigger point therapy and how is it used with this burning butt pain??

       

      I have been suffering with burning pain when I sit for, believe it or not, 40+ years.  I have tried many things, seen many doctors but to no avail.  My burning pain can be anywhere from the back of my upper thighs all the way up to the sacral area and small of the back, depending on where the pressure from sitting is.  As soon as I stand up the pain almost instantly goes away.  Unfortunately, however, standing too long causes severe mid/upper back pain from a weak back.

      I've tried phys. therapy, injections twice, chiropractic services, a wasted trip to Mayo Clinic in the late 1970's, etc., all to no avail, just blank stares from the doctors or being dismissed with a curt "I'm sorry but I can't help you."  For over 30 years I took a modest daily amount of Darvon and then Vicodin 10mg, which sometimes took the edge off of the pain.  However, I stopped "cold turkey" about five years ago and have had nothing since.

       

      About a month ago, for no apparent reason, the burning pain got significantly worse and I am really struggling now.  I feel disabled as the things I enjoy, such as movies, watching TV, taking road trips, going to plays, etc., are all just too painful now.  Also, since the increase in pain, I now get pain on my side by the trochanteric area when I lie on that side.  Unfortunately it has affected both sides.  When I lie on my back the burning pain goes all across above my butt.  My one "refuge" was being able to lie in bed pain free and now that is impossible.

       

      Anyway, that is my story.  I don't know if others are still monitoring this site but I hope you are.  I, too, thought I was the only one suffering from this condition due to the blank stares I got from various doctors as I described my symptoms.  I'm seeing a new internist soon in hopes of getting a referral to the University of Michigan Pain Clinic. (I live near Ann Arbor, MI.)  I was seen there when they first opened up in the 1980's with one doctor who gave me an injection that did nothing.  Now they are much larger with a bigger staff and maybe some new ideas.  I can dream anyway.

       

      Steve

    • Anonymous
      Steve
      Apr. 21, 2013

      What is trigger point therapy and how is it used with this burning butt pain??

       

      I have been suffering with burning pain when I sit for, believe it or not, 40+ years.  I have tried many things, seen many doctors but to no avail.  My burning pain can be anywhere from the back of my upper thighs all the way up to the sacral area and small of the...

      RHMLucky777

      Read More

      What is trigger point therapy and how is it used with this burning butt pain??

       

      I have been suffering with burning pain when I sit for, believe it or not, 40+ years.  I have tried many things, seen many doctors but to no avail.  My burning pain can be anywhere from the back of my upper thighs all the way up to the sacral area and small of the back, depending on where the pressure from sitting is.  As soon as I stand up the pain almost instantly goes away.  Unfortunately, however, standing too long causes severe mid/upper back pain from a weak back.

      I've tried phys. therapy, injections twice, chiropractic services, a wasted trip to Mayo Clinic in the late 1970's, etc., all to no avail, just blank stares from the doctors or being dismissed with a curt "I'm sorry but I can't help you."  For over 30 years I took a modest daily amount of Darvon and then Vicodin 10mg, which sometimes took the edge off of the pain.  However, I stopped "cold turkey" about five years ago and have had nothing since.

       

      About a month ago, for no apparent reason, the burning pain got significantly worse and I am really struggling now.  I feel disabled as the things I enjoy, such as movies, watching TV, taking road trips, going to plays, etc., are all just too painful now.  Also, since the increase in pain, I now get pain on my side by the trochanteric area when I lie on that side.  Unfortunately it has affected both sides.  When I lie on my back the burning pain goes all across above my butt.  My one "refuge" was being able to lie in bed pain free and now that is impossible.

       

      Anyway, that is my story.  I don't know if others are still monitoring this site but I hope you are.  I, too, thought I was the only one suffering from this condition due to the blank stares I got from various doctors as I described my symptoms.  I'm seeing a new internist soon in hopes of getting a referral to the University of Michigan Pain Clinic. (I live near Ann Arbor, MI.)  I was seen there when they first opened up in the 1980's with one doctor who gave me an injection that did nothing.  Now they are much larger with a bigger staff and maybe some new ideas.  I can dream anyway.

       

      Steve

    • Rob 2
      Aug. 13, 2013

      Trigger point therapy deals with muscle knots (trigger points) in your muscles. Its somewhat new. If you have many trigger pints in your muscle it could cause the muscle to become shorter thereby causing pain. You could potentially have trigger points in your butt or the back of your thighs. IN either case, it would cause pain when you sit down. This appears...

      RHMLucky777

      Read More

      Trigger point therapy deals with muscle knots (trigger points) in your muscles. Its somewhat new. If you have many trigger pints in your muscle it could cause the muscle to become shorter thereby causing pain. You could potentially have trigger points in your butt or the back of your thighs. IN either case, it would cause pain when you sit down. This appears to be my problem. After doing trigger point therapy for about 3 months I have significantly decreased my pain. I have found that dry needling therapy is more effective than massage trigger point therapy. When a fair amount of the trigger points are gone, you will be able to get rid of the rest yourself using either a trigger point stick (purchased at a bike shop) or a rod purchased at home depot. (Note: I found a .25 inch diameter rod from home depot cut to the length I needed worked especially well). The therapist will show you how to do it yourself. You press the trigger point gradually, not suddenly.

  • Anonymous
    Annette
    Mar. 03, 2013

    I thought this problem was only something I was dealing with but am glad that other people have it too. I like many of you get the burning sensation when I am sitting for too long. I already have problems with my spine and am hoping that my naturopath can help me with this problem. I am not taking any medication and just lie down on the bed when it gets too...

    RHMLucky777

    Read More

    I thought this problem was only something I was dealing with but am glad that other people have it too. I like many of you get the burning sensation when I am sitting for too long. I already have problems with my spine and am hoping that my naturopath can help me with this problem. I am not taking any medication and just lie down on the bed when it gets too much. All the best to everyone

  • kj
    kj
    Feb. 25, 2013

    I am in so much pain right now.  I have been battling this hip/thigh/ butt pain since I had my 2nd baby is 2010.  Is anyone still on this board?

  • marak
    Jan. 21, 2013

    Look up Pudendal Neuralgia.......I,have been suffering for about 4 years now.....

  • Ranger
    Dec. 11, 2011

    I have been having this for about 6 years now.  Four years ago was diagnosed with Polymyalgia Rheumatica and Large vessel vasculitis (Aeorta and branches).  Have always been a keen walker and am in a lot of pain after a good walk, especially if hill work is involved.  Been to see a Chiropractor who showed me stretching exercises and told me not...

    RHMLucky777

    Read More

    I have been having this for about 6 years now.  Four years ago was diagnosed with Polymyalgia Rheumatica and Large vessel vasculitis (Aeorta and branches).  Have always been a keen walker and am in a lot of pain after a good walk, especially if hill work is involved.  Been to see a Chiropractor who showed me stretching exercises and told me not to sit down for long periods.  Says walking is best thing. Stretch at least twice a day and ice afterwards.  Glutes settle down after a couple of days but I like to walk at least 3 times a week.   Also use a tennis ball on pressure points (Accupressure)- by simply lying on it.

     

    Hope you get something from this.

    • Anonymous
      Anonymous
      Mar. 28, 2012
      My dad had stomach pain for a year and no one could diagnose him. He finally went to a urologist and he was diagnosed with painful bladder syndrome (Interstitial cystitis). He has the same burning in the buttocks as most of you describe. Hope this helps:)
    • Anonymous
      mike
      Nov. 30, 2012

      You know what i have the same burning pain in my butt when i sit for long periods.
      I also am going to a urologist for bladder pain and suspect it is systisis .
      So that is interesting.

    • Anonymous
      mike
      Nov. 30, 2012


      About the comment above
      When your dad was diagnosed with cystitis.
      What did the doctor prescribe and did it help him?
      thanks

  • Lana
    Sep. 05, 2011

    Hi,

    My doctor prescribed statin drugs (Provacol, later Lipitor) to low high cholesterol.
    I was taking those pills for one year. I was 46 years in that time. I am slender by the way. I don't have obesity.
    First month I got discomfort in my muscles of my all body (flying pain in different spots of body) and hipbone (area around my body - small back, hips, low abdomen)....

    RHMLucky777

    Read More

    Hi,

    My doctor prescribed statin drugs (Provacol, later Lipitor) to low high cholesterol.
    I was taking those pills for one year. I was 46 years in that time. I am slender by the way. I don't have obesity.
    First month I got discomfort in my muscles of my all body (flying pain in different spots of body) and hipbone (area around my body - small back, hips, low abdomen). I didn't think that is from statin drugs. I should to stop to take those pills right away.
    In one year I got so strong sharp pain, I couldn't even put my socks in the morning
    and lock my bra. 800 mg of ibuprofen didn't help me at all. I was ready call ambulance every day. Doctor said that pain is not from statin drugs. You can continue. But I stopped and started to ask for exam of my bad condition. During two years I got about 7 ST (with contract medication) and MRI, consultation with numerous specialists (including arthritis specialists), about 50 different blood tests. Result: everything is normal.
    Now I am 52 years old. I have same pain around hip bone area, also in small back and low abdomen. I can put socks, if I laying on the bed and put up legs. Exercises don't help. I feel burning sensation, if to touch my hips by fingers.
    I have lots of relatives, but nobody had or have same symptoms.
    Every other day pain become stronger with pulsation, I am taking ibuprofen 400 mg now.
    Low dosage of ibuprofen started to remove 40% of my pain now.

    For last 6 years I spent a few thousand dollars for natural dietary supplements. No improvement.
    One recommendation was: take vit D 1400 (daily dosage), vit group B (complex works efficiently, take for 10 days), calcium (with D for better absorbtion), fish oil 600 mg (Nordic).
    Other recommendation was: take Turmeric with black paper for better absorption. This is anti-inflammatory dietary supplement.

     

    Lana
    September 5th, 2011

     

  • Carol
    Aug. 09, 2010

    I've read just a few of the posts here and I had no idea anyone else suffered

    with this stuff!  I've had burning bilateral buttock, hip and leg pain for so

    many years I cannot remember how long, at least 20, but this has been

    exacerbated by sacroiliac and lumbar facet joint injections in April of this year.

    It absolutely never leaves, only intensifies...

    RHMLucky777

    Read More

    I've read just a few of the posts here and I had no idea anyone else suffered

    with this stuff!  I've had burning bilateral buttock, hip and leg pain for so

    many years I cannot remember how long, at least 20, but this has been

    exacerbated by sacroiliac and lumbar facet joint injections in April of this year.

    It absolutely never leaves, only intensifies as the day goes on.  Sitting is a

    nightmare, trying to lie down is too which gives me about 3-4 hours/night of sleep if that.  I know the injections did something to intensify this pain.  The

    pain management doctor wants to do SI and lumbar rhizotomies but I am

    scared to death to proceed with them!  I was changed from M.S. Contin to

    Hydrocodone last week which was another nightmare, and although I think

    the medication doesn't help, I only have to go without it to find out how much

    worse the pain can be.  Massage theraphy, accupuncture, chiropractic care,

    nothing has helped and seems to only make me worse.  The burning and

    pain is now into the perineal area,..it's like it's chasing itself and soon will

    be throughout my entire body...ANY suggestions would be appreciated.

    Thank you.

    • Anonymous
      carlos
      Oct. 27, 2010

      Maybe you should check for pudendal nerve entrapment

  • paingoaway
    Mar. 15, 2010

    Hi Everyone

       I have been dealing with the amazingly similar pain that Gerald described in 2007 since 2004.  I thought I was alone, but today I happened to find this website and am happy (or sad) to learn that there are some many people suffering this "mysterious", "undiagnosed", aggravating pain. I would like to share my experience. ...

    RHMLucky777

    Read More

    Hi Everyone

       I have been dealing with the amazingly similar pain that Gerald described in 2007 since 2004.  I thought I was alone, but today I happened to find this website and am happy (or sad) to learn that there are some many people suffering this "mysterious", "undiagnosed", aggravating pain. I would like to share my experience.  (I am surprised there are no entries in 2010. I hope this website is still alive, because I think if nothing else, it gives a comfort to find some support.

     

       My pain started emerging after I had an ovarian cyst surgery in 2004. It is not excruciating pain, but dull persistent pain.  It dose flare up sometimes.  But recently, (since last Fall), the pain gets more intense.  I  have a job which requires me to sit all day writing. I think the pain may be caused by chronic muscle fatigue.  I also have a very stressful job. I heard that stress also causes pain.  I also have Vitamin D deficiency.  I am taking prescription Vitamin 50,000 IU weekly.  But unlike Gerald, I didn't feel much benefit for my pain.  I have also been treated weekly with acupuncture for few years.   I believe it helps, otherwise, it could be worse.  But it doesn't get rid of it.   I don't like to take medicine, only Alieve occationally.  Also only a few times I put Lidocine patch on. 

     

      Have to stop here because of the pain. 

     

    May

    • Hilary
      Jun. 28, 2010

      Ro,how did you get diagnosed with Pudendal nerve entrapment? I am in UK.  I hope that you are still following this thread and that you are better.  Take care

      Hilary

    • kurt
      Jul. 24, 2010

      Hey, can any1 out there give me some advice please.. Just about a year ago I started to experience pain in my piriformis muscle after lifting something heavy.. The pain was constant for 6 months when one day the pain subsided.. That same week the pain was gone and a new symptoms { such as burning } started to develop. The burning was first noticed lying down...

      RHMLucky777

      Read More

      Hey, can any1 out there give me some advice please.. Just about a year ago I started to experience pain in my piriformis muscle after lifting something heavy.. The pain was constant for 6 months when one day the pain subsided.. That same week the pain was gone and a new symptoms { such as burning } started to develop. The burning was first noticed lying down and sitting wasn't much of a problem.. Few weeks the burning was surrounding the whole buttock but never extending down the leg..  Now the burning is gone its just the soreness which is the biggest problem causing discomfort while sitting.. Could this be  piriformis syndrome or just the muscle is lacking oxygen?? 

  • Anonymous
    Anonymous
    Apr. 06, 2009

    I'm in the same place with this intense burning pain in my hip. I can't sit for to long or stand for no more than 10 minutes without feeling alot of pain in my hip. And sleeping at night is so hard. And if i do fall asleep on my left side. It feels like someones got a burning torch to my hip. I've had a CT Scan done a few years ago. Then just last week I had...

    RHMLucky777

    Read More

    I'm in the same place with this intense burning pain in my hip. I can't sit for to long or stand for no more than 10 minutes without feeling alot of pain in my hip. And sleeping at night is so hard. And if i do fall asleep on my left side. It feels like someones got a burning torch to my hip. I've had a CT Scan done a few years ago. Then just last week I had a MRI done. Nothing odd came up on either of them for the need of sugery. But I'm only 36 yrs.old. There's so much things I cant do anymore...cause of my burning pain in my left hip. If anyone has any idea whats wrong with me and why I'm feeling all this pain all the time...please let me know!!!!

    • Anonymous
      Debra
      Apr. 19, 2009

      Hello... to all of you with this burning/pain.  I have been trying to come up with answers and found this site.  I have never hear of this until it happend to me.  I have also had x-rays and MRI and have gone to two chiropractors, a physical therapist and was checked by a specialist...seems that no one has a clue of what can be done to correct...

      RHMLucky777

      Read More

      Hello... to all of you with this burning/pain.  I have been trying to come up with answers and found this site.  I have never hear of this until it happend to me.  I have also had x-rays and MRI and have gone to two chiropractors, a physical therapist and was checked by a specialist...seems that no one has a clue of what can be done to correct this problem.  I had an SI injury two plus years ago and have found much relief for that by stretching, but it hasn't seemed to help this other burning/pain on both sides of my hip.  I can't sleep on either side and cannot sit long...this is awful.  At least, by reading the many posts here, I know that I am not alone.  I will keep checking this site and maybe someone will have found answers to our problem...I hope so...God help us!

    • Gerald
      Apr. 22, 2009

      Hi Debra,

       

      I originally started this post when I had a different email account, so I haven't been able to get in for a while. I am so sorry to hear that you have this problem. There are so many who have responded and it amazes me that the medical providers seem to be puzzled as we are. Have you tried anything for sleep? I finally had to resort to taking...

      RHMLucky777

      Read More

      Hi Debra,

       

      I originally started this post when I had a different email account, so I haven't been able to get in for a while. I am so sorry to hear that you have this problem. There are so many who have responded and it amazes me that the medical providers seem to be puzzled as we are. Have you tried anything for sleep? I finally had to resort to taking Lunesta every night before bedtime. If I hurt at night, I am not aware of it, and the rest seems to help. The only person that I have heard of who got real relief is Denise, who has posted several times in this string. She had bi-lateral surgeries to remove a muscle that runs along the buttocks- piriformis (hopefully, I spelled that right). We have stayed in touch and she reports that she is better now. It is a drastic step with a long recovery, but at least in her case, it helped. Best of luck to you in your search for the right solution for your pain. I am in my 7th year and I still hurt.

       

      Gerald

    • Anonymous
      Anonymous
      May. 10, 2009

      Hi, all of you. I think that Denise used to post on the forum I am on. I had surgery (piriformis and cleaning up nerves) about 7 months ago. I am surprised that Dr. Aaron Filler's name hasn't come up on this forum. He is the top man in piriformis syndrome.

       

      Just thought I would drop in and see if people are still posting here.

       

       

    • Anonymous
      Debra
      May. 12, 2009

      I have a question for ANY ONE who can answer...I'm trying to search for answers and I am wondering if Piriformis Syndrome causes you to feel a burning pain on the SIDES of the hip.  Seems like the exercises target the back and not the sides?? 

    • Anonymous
      Shirley
      May. 12, 2009

      Yes, I did get burning pain in the sides of the hip. The piriformis attaches to the greater trochanter and can cause burning in that area. I had burning in the middle of the butt and at the sacrum edge where thepiriformis attaches on the other side and then also burning pain down the outside of the leg and into the foot. It would get worse as the day progressed...

      RHMLucky777

      Read More

      Yes, I did get burning pain in the sides of the hip. The piriformis attaches to the greater trochanter and can cause burning in that area. I had burning in the middle of the butt and at the sacrum edge where thepiriformis attaches on the other side and then also burning pain down the outside of the leg and into the foot. It would get worse as the day progressed and by night I wasn't much god for anything except lying on the sofa and watching TV.

       

      Since surgery my leg pain is much better and the buttock pain is gradually getting better.

       

      Shirley

  • Anonymous
    Darlene Boutilier
    Feb. 10, 2009

    Hi,my 25 year old sons has the same promble all over his back is in concist buring feeling,But with no pain ,just buring,The doctors can't get him an answer,he had x-rays on his bak and nothing turned-up!My som has been off work dor one month now.I just don't know what to do for him anymore!

    • gebrazell
      Apr. 05, 2009

      I was reading back through these posts and wondered how your son is now?

       

      Gerald

    • In pain as I writ
      Jan. 23, 2011

      Hi everyone,

           My mother is 68 years old, lives in Ft. Myers, FL and has been desperately trying to find a doctor to diagnose and treat her ongoing pain/burning in the buttocks. It's been over 10 years now and we have not had any success.  She barely sleeps anymore because the pain and burning is so bad that it keeps her awake and she...

      RHMLucky777

      Read More

      Hi everyone,

           My mother is 68 years old, lives in Ft. Myers, FL and has been desperately trying to find a doctor to diagnose and treat her ongoing pain/burning in the buttocks. It's been over 10 years now and we have not had any success.  She barely sleeps anymore because the pain and burning is so bad that it keeps her awake and she constantly has to reposition her body.  I only live one hour away and she can no longer make the drive to come see us anymore.  Sitting is almost impossible.

           The sad thing about this is that just about a year ago, I never really took her complaints seriously until now.  I am 50 years old and in the last 7 months I too have developed this very painful/burning of the buttocks especially if I sit for more than 10 minutes.  

           I now have become obsessed in finding a cure not only for my poor mother but for myself as well.  

          Interestingly enough, both my mother and I have always been healthy eaters, excercise regularly, and take vitamins faithfully.

           It's so sad to read everyone's stories here and have one doctor after the next giving diagnosis without really being sure.  My mother was almost put under the knife just because her doctor thought it was a herniated disc.  I begged her to go for a 2nd opinion which she did to find absolutely nothing wrong in her spine.

           After much research of piriformis syndrome and ischialgluteal bursitis, I tend to agree that bursitis is more likely to be closest to our symptoms.

            piriformis tends to affect one side more than the other and sometimes with pain down the leg.  This could be what others are feeling, but in our cases, the pain is strictly in the bottom of our buttocks and the burning comes deep within the buttocks and eventually the pain is felt all the way through and on the bottom and outside of the hips, but mostly on the back bottom parts.

            My mother is so advanced with this pain that she can actually feel the heat radiating from her buttocks and can now see lots of redness as well.  

            My fear is that there really is no cure and that is why the doctors are clueless.  At least that is the feeling I am getting from reading all of these posts.

       

           Please do not give up and join me in continuing to research this mysterious problem.  Together we will find the answers.

           Right now we have an orthopedic helping us in the research.  Recently, he contacted my mother to let her know he found a doctor in Oklahoma that might be able to help her.  Unfortunately, my mother did not ask for the doctor's name and now we have to wait until she meets with him to find out.

           I will keep you posted. 

       

      Thanks for all of your support.

      Maribel

       

       

  • Beatingthepain
    Oct. 22, 2008

    I hate to add my own comments on top of all the rest, but I urge you to keep seeking out help for this condition. Had I gave up so long ago, I never would have been given the opportunity to get the real problem fixed, nor to even understand what was really going on.

     

    Just keep looking for someone who will listen, who will take your complaints seriously,...

    RHMLucky777

    Read More

    I hate to add my own comments on top of all the rest, but I urge you to keep seeking out help for this condition. Had I gave up so long ago, I never would have been given the opportunity to get the real problem fixed, nor to even understand what was really going on.

     

    Just keep looking for someone who will listen, who will take your complaints seriously, and who will look beyond the skin, for answers. I know it is hard to be told time and time again that there is no evidence of your pain, but persist, don't give up. Eventually you will find someone (like I did) who will listen, take a second or third (or fiftieth!) look to find the real problem.

    • gebrazell
      Oct. 22, 2008

      Thank you for your encouragement. IT's now been over 7 years. I've learned how to structure my time so that I minimize sitting. Since my original post, I've had physical therapy to stretch the piriformis muscle (that sort of toned up the area, but gave no measurable relief) and have had two rounds of steroid injections to the bursa of the ischiel area by a...

      RHMLucky777

      Read More

      Thank you for your encouragement. IT's now been over 7 years. I've learned how to structure my time so that I minimize sitting. Since my original post, I've had physical therapy to stretch the piriformis muscle (that sort of toned up the area, but gave no measurable relief) and have had two rounds of steroid injections to the bursa of the ischiel area by a pain mgt. specialist. The injections seem to be of some relief for several weeks, at least. The pain mgt. doctor thinks it is bursitis of the ischiel bone (the tailbone). He said that it's just a bad place to have it.

       

      Thanks again. I'll keep exploring treatments.

    • gebrazell
      Jan. 07, 2009

      I can relate to the comment by Ro and others that the doctors seem to have no clue, but just look for a quick diagnosis to get rid of you. For instance, the first neurologist I saw looked at nothing more than some X-rays and declared emphatically "It's nerve damage." When I asked from what cause, he said "we never know in these situations." He then immediately...

      RHMLucky777

      Read More

      I can relate to the comment by Ro and others that the doctors seem to have no clue, but just look for a quick diagnosis to get rid of you. For instance, the first neurologist I saw looked at nothing more than some X-rays and declared emphatically "It's nerve damage." When I asked from what cause, he said "we never know in these situations." He then immediately ordered a nerve study with a different neurologist. The test was totally negative for nerve damage. In fact, that neurologist said I tested like a teenager (I was 65 at the time!). I was routed back to the referring neurologist who said that even though I tested as having no nerve damage, they were treating me for that anyway. I was dumbfounded. That started the series of meds. Lyrica then Neurontin. They gave no relief, caused terrible side effects and I had to stop taking them.

       

      I feel like printing off this entire string and taking it with me to the next appointment with whomever I see to prove that I am NOT the only person in the world with this problem.

       

      Gerald 

  • Anonymous
    LindaV
    Apr. 28, 2008

    I am so glad I found this post and the comments with it.    I thought I was alone with this condition.  It was diagnosed as piriformis syndrome last Dec, and I have tried everything to help alleviate the pain.    I had to leave my 25-year-career in PR because I can no longer sit.

     

    Piriformis syndrome is different from...

    RHMLucky777

    Read More

    I am so glad I found this post and the comments with it.    I thought I was alone with this condition.  It was diagnosed as piriformis syndrome last Dec, and I have tried everything to help alleviate the pain.    I had to leave my 25-year-career in PR because I can no longer sit.

     

    Piriformis syndrome is different from regular sciatic problems because it doesn't involve the spine.  It starts out as an ache in your hip or glute, and can get so bad that your entire leg feels as if it doesn't have any circulation.   From what I understand, it is caused by prolonged sitting - it causes the piriformis muscle to tighten and contract around the sciatic never, and it's very difficult to resolve.

     

    I have tried yoga, physical therapy, ibuprofen, acupuncture, massage, and steroid injections.   Nothing has worked.    Sitting is excruciating, and I have lost 2 pant sizes from all the standing and exercising.   So there's a plus, but I wouldn't recommend this approach for weight loss.

     

    Just to find others online who have had the same uncomfortable burning sensation helps.    When the pain is really intense, only Ambien will help me get to sleep.   

     

     

    • gebrazell
      Apr. 28, 2008

      Hi Linda,

      I am sorry about your pain. Mine has never even been given a name, other than "nerve damage", and that was in spite of the fact that two nerve studies showed no signs of nerve damage. I have been likewise surprised to learn that there are others with similar symptoms. I helps just to know you are not alone. I wish you the best in your search for relief....

      RHMLucky777

      Read More

      Hi Linda,

      I am sorry about your pain. Mine has never even been given a name, other than "nerve damage", and that was in spite of the fact that two nerve studies showed no signs of nerve damage. I have been likewise surprised to learn that there are others with similar symptoms. I helps just to know you are not alone. I wish you the best in your search for relief.

    • Anonymous
      LindaV
      Apr. 28, 2008

      Thanks, Gerald.   I too had the nerve test done, and came thru fine.   MRIs also showed no spine damage or problems.   The first time I experienced it was on a long flight back from Europe about six years ago.   The second time was about 18 mos ago at a new job where I sat all day.  The last episode at Thanksgiving...

      RHMLucky777

      Read More

      Thanks, Gerald.   I too had the nerve test done, and came thru fine.   MRIs also showed no spine damage or problems.   The first time I experienced it was on a long flight back from Europe about six years ago.   The second time was about 18 mos ago at a new job where I sat all day.  The last episode at Thanksgiving was the final straw.  I simply cannot sit.   We cancelled plans to go to Europe this summer.   I have left work and am at my wit's end.  I type at my computer standing up - no sitting.    I will try the Vitamin D you mentioned in earlier comments.    Several helpful friends have recommended occupations that require standing, such as crossing guard, flight attendant, bartender, and a member of Blue Man Group.  Laughing

    • gebrazell
      Apr. 28, 2008

      The Vitamin D increase did seem to have a positive effect in lowering my pain for several months. I had to discontinue using supplements for a week prior to a recent planned surgery on my hand. My buttocks pain came back very quickly. Once I was allowed to resume my medications and supplements, I did so; however, the pain is still with me after two weeks. During...

      RHMLucky777

      Read More

      The Vitamin D increase did seem to have a positive effect in lowering my pain for several months. I had to discontinue using supplements for a week prior to a recent planned surgery on my hand. My buttocks pain came back very quickly. Once I was allowed to resume my medications and supplements, I did so; however, the pain is still with me after two weeks. During the recovery from my surgery, I could not drive for a week or so, so I think I suffered from a lack of activity and more sitting than usual. I have not given up on the vitamin D though.

       

      I recently heard that a prominent dentist, who has a practice near my home, cannot sit either. One of his patients said he has a stand-up height desk.

       

      This is such an odd and life-changing malady. I retired early (at 58) hoping to get an early jump on my "golden years", but this problem started shortly afterwards. I simply do no make travel plans because I never know how I will feel the next day. Sometimes I feel that family and friends think I use this problem as an excuse NOT to be involved in trips and activities. How I wish I could live a normal life.

       

      Take care,

       

      gebrazell@msn.com

    • Anonymous
      LindaV
      Apr. 28, 2008

      I'll send you good thoughts.  I hear you on the travel plans.   And friends and family don't quite understand, since it's not an obvious (i.e. visual) malady.   I have a 2nd piriformis trigger injection scheduled for May 12th, so am hoping that helps - we shall see. 

    • Anonymous
      Denise
      May. 11, 2008

      Here is a website that explians the surgery for piriformis syndrome:

      http://www.answers.com/topic/piriformis-syndrome?cat=health

       

      Best of luck to all of you with this.

      Denise

    • Anonymous
      Linda VandeVrede
      May. 12, 2008

      Denise - thank you - I will check out the link you provided!

       

      LindaV

    • gebrazell
      May. 12, 2008

      Denise,

       

      I've read the information and I thank you.  It is amazing to me that none of the many medical professionals I have sought out for an answer has ever mentioned this possible diagnosis. I pray that your procedure goes well.

       

      Gerald

    • gebrazell
      May. 12, 2008

      Denise,

       

      I've read the information and I thank you.  It is amazing to me that none of the many medical professionals I have sought out for an answer has ever mentioned this possible diagnosis. I pray that your procedure goes well.

       

      Gerald

    • Anonymous
      denise
      May. 15, 2008

      If you are going to pursue this diagnosis, you may want to see a dr.that will do an MRI that shows the nerve irritation and have xrays done before a surgeon will consider the surgery. I guess in some cases they remove the whole piriformis muscle because it may always cause problems and it is not a necessary muscle. I go for my nerve MRI tomorrow and will know...

      RHMLucky777

      Read More

      If you are going to pursue this diagnosis, you may want to see a dr.that will do an MRI that shows the nerve irritation and have xrays done before a surgeon will consider the surgery. I guess in some cases they remove the whole piriformis muscle because it may always cause problems and it is not a necessary muscle. I go for my nerve MRI tomorrow and will know more after that. Hopefully this is what I have and they can take care of it and end my disabiling condition!

      I will let you all know how it is going as things progress.Wink

      Denise

    • Anonymous
      MedAdvocate
      May. 29, 2008

      I have similar pain to what is described by many posters here.  In my case it is related to a tailbone injury (coccyx). You may want to look into this aspect of things.  coccxy.org is a good reference.

      Also, if anyone has had steroid injections, these may have actually caused or made the problem worse due to the tissue damaging nature of the steroid....

      RHMLucky777

      Read More

      I have similar pain to what is described by many posters here.  In my case it is related to a tailbone injury (coccyx). You may want to look into this aspect of things.  coccxy.org is a good reference.

      Also, if anyone has had steroid injections, these may have actually caused or made the problem worse due to the tissue damaging nature of the steroid.

       

       

    • Anonymous
      dmjames
      May. 30, 2008

      I read on the website I listed in the May post that a tailbone injury or direct blow or contusion to the butt can trigger piriformis syndrome,so please do not rule that out as a cause of most of you symptoms, and believe me, a dr. will prob. not acknowledge that fact, so print out some info.and bring it with you.

       

      Good luck, I feel your pain!

      I go for...

      RHMLucky777

      Read More

      I read on the website I listed in the May post that a tailbone injury or direct blow or contusion to the butt can trigger piriformis syndrome,so please do not rule that out as a cause of most of you symptoms, and believe me, a dr. will prob. not acknowledge that fact, so print out some info.and bring it with you.

       

      Good luck, I feel your pain!

      I go for my surgery on July 7th with Dr.Henry Bohlman in Cleveland, I hear he may be the best in the world. Anyway, he does not do the MRI that shows the nerve irritation anymore. He can tell by the MRI I brought and an xray and symptoms.He just needed the MRI and Xray to rule out spine problems.

      I anyone wants more info. on the surgery, just ask me.  I have researched it a lot! HEre is another forum that is FULL of surgery stories....

       

      Just google running forums piriformis and it is the first entry there. Won't let me past the url....

       

      www.runninforums.com/piriformis_release_surgery_  ....

       

      DeniseWink

       

       

       

    • Anonymous
      ro
      Jan. 07, 2009

      Hi Denise,

      i just found this website and it mirrored what I have been going through for the last year. Today I am having a real challenge and decided to lookagainfor an answer online. I have had the whole treatment regime- lyrica, neurontin, epidurals, amitripilin and the patches but nothing worked. I also had surgery to remove the coccyx without much luck...

      RHMLucky777

      Read More

      Hi Denise,

      i just found this website and it mirrored what I have been going through for the last year. Today I am having a real challenge and decided to lookagainfor an answer online. I have had the whole treatment regime- lyrica, neurontin, epidurals, amitripilin and the patches but nothing worked. I also had surgery to remove the coccyx without much luck either. I tried a chiropractor who promised relief after 6 weeks- 3 visits per week,then an accupuncturist - had three seesions per week for 13 weeks- did get some temporary relief but nothing lasting.I amgoing to try the vit d today as i am desperate now.Am 43 years and need to keep working but reaching my end really.I know that this is the worst area for pain,embarrassment alone,each time I have togoto another doctor.Can u say if your procedure worked as none of the mri's or xrays showed anything major

    • Anonymous
      dmjames
      Jan. 07, 2009

      hi,

      well i had the surgery on both sides, where they remove the whole piriformis muscle called a piriformis resection, one in July and the other in Nov. and i hate to say that i am in more pain now than i have been in in over a year. I don't know what is going on, but at first, it seemed to immediately take the pain away and now it's unbearable. I probably...

      RHMLucky777

      Read More

      hi,

      well i had the surgery on both sides, where they remove the whole piriformis muscle called a piriformis resection, one in July and the other in Nov. and i hate to say that i am in more pain now than i have been in in over a year. I don't know what is going on, but at first, it seemed to immediately take the pain away and now it's unbearable. I probably overdid it, because of the holidays and my son got married last week, but it was gettng steadily worse after the 2nd  week of recovery. I had even been off the vicodin for a week and then the buttock pain started all over again on both sides and with a vengeance. It seems to be mostly muscle and inflammation pain and knots but i cannot sit or stand at all.i am taking 600-800mg  of ibuprofen all day and an ocassional vicodin to get thru the day. I called the nurse yesterday and she thought maybe i did really overdo it and that i am being impatient since it has only been 6 weeks and i need to give it more time before worrying. but i am worried. I know i do want to be better now, who wouldn't, but i am also aware of recovery time and this is a different pain than surgery recovery pain, my incision area is feeling great, this is deep in the butt and the same prob. i had way before the first surgery for 2 years. only the Phys. therapist got me out of the severest pain with ultrasound and other techniques after many weeks. but i still could never sit more than 20mins unless i walked all day long, every day. it is so bizzare and apparently more common than i thought by looking at these websites, esp. the running forum one.

       

      on there many have had the surgery, some with complete relief and others not really getting relief. there has to be an answer and someone that specializes in this awful debilitating butt pain syndrome that ruins lives and puts people out of work forever.

      I cannot do anything that i want to or used to do 3 years ago, i cannot even be on the computer long, even typing on a laptop is hard on my mid and upper back and i have had so many problems with those areas too with all of this. I am sorry to be so negative but i am at the end of my rope sometimes! But, i will lay low and give it more time. i am supposed to call the nurse back later this week and let her know how i am doing, maybe a pain specialist can give me a shot or something???? i cannot go back to the surgeon, dr. Bohlman in Cleveland,  for awhile because it is a 4 hour drive and i cannot  be in a car more than an hour even as a passenger. And he was not very helpful at all last time i saw him at 6 wks post surgery  because i was having trouble then and he never even looked at my incision or examined me, just rushed me out of there after a few mins. saying it takes time, maybe 6-8 months, don't worry. :(

      hang in there there has to be an answer, we just haven't found it.

      Denise

    • Anonymous
      Ro
      Jan. 07, 2009

      Denise,

      Thank you for being so prompt. I will tell you that I am really drawing to the end now as I simply cannot understand why and how it is possible that they cannot understand what we're going through. It pains me to know that their main and only concern is to make whatever money they can out of our discomfort and simply tell us to wait for relief....

      RHMLucky777

      Read More

      Denise,

      Thank you for being so prompt. I will tell you that I am really drawing to the end now as I simply cannot understand why and how it is possible that they cannot understand what we're going through. It pains me to know that their main and only concern is to make whatever money they can out of our discomfort and simply tell us to wait for relief. In my case I am stationed in a foreign country without much support so its even harder trying to get someone to understand.

      My last resort is a column I saw recently on hypnotism where the person works to make you believe that you are painfree. If I dont get some sort of relief I think that I will go mad!

      Have you heard of this before?

      thanks

      Ro

    • gebrazell
      Jan. 07, 2009

      Hi Ro and Denise,

       

      First, Denise, I am sorry to hear that your pain is so severe after the surgery. I had so hoped that you had found the answer--at least in your case, with the piriformis surgery.

       

      I started this string with a post over a year ago and until that time, I had begun to believe that I was the only person in the world ever afflicted...

      RHMLucky777

      Read More

      Hi Ro and Denise,

       

      First, Denise, I am sorry to hear that your pain is so severe after the surgery. I had so hoped that you had found the answer--at least in your case, with the piriformis surgery.

       

      I started this string with a post over a year ago and until that time, I had begun to believe that I was the only person in the world ever afflicted with this wierd, but so painful, malady. I am amazed at the number of posts that have followed and the number of people who have this pain, yet the doctors seem to have no clue. The ONLY benefit I have received has been from steroid injections directly to the bone (ishiel tuberosity). The first injections were in early fall and worked for only a week. The second was a higher dosage and had lasted for about 2 months, but the pain started to return last week. These injections are being administered by a neurological pain mgt. specialist. He says my diagnosis is "bursitis of the ishiel (sp?) bone. That seems to make sense, because nothing abnormal shows on the scans. They have told me that I can only have three steriod treatments a year, so they have already scheduled me for late 1st Qtr., if needed. Ro, if you have not yet tried the steriod injections, that would be my suggestion. I know there are side effects to this any all meds and treatments, but you get to the point that you just want relief now and let tomorrow take care of itself.

       

      If you try a hypnotist, let me know how it works out. Y

       

      Best regards,

       

      Gerald

    • Anonymous
      dmjames
      Jan. 07, 2009

      gerald and ro,

      not sure how to respond to all of you if it does automatically? so i typed one and pasted on the other.

       

      I have heard of hypnosis for lots of things, not sure how effective with pain, but what the heck? I also heard good things about a TENS unit, which is a drug-free treatment, where you hook up electrode to diff. parts of your body and...

      RHMLucky777

      Read More

      gerald and ro,

      not sure how to respond to all of you if it does automatically? so i typed one and pasted on the other.

       

      I have heard of hypnosis for lots of things, not sure how effective with pain, but what the heck? I also heard good things about a TENS unit, which is a drug-free treatment, where you hook up electrode to diff. parts of your body and it sends painless impulses that reroute the nerve message to/from your brain and thus you don't feel the pain. I am considering asking for this. You can google more on it. Someone on the runners forum uses this. You do need a prescription and you can rent them too until you see if they work, i think they run 80-400$ depending on where you get it.

       

      My nurse from Cleveland just called me again and discussed my pain with my surgeon, Dr. Bohlman and they feel that I over did it and that it is the nerve, still irritated prob. because of how compressed it may have been before the surgery. She says sometimes it can take 6 mos. to a year for complete relief and they are very optimistic that i will get relief, to be very patient and take it easy. I asked about ultrasound, PT, massage, etc. so they will call me back on what they think. I feel that a few weeks to the PT will speed up healing, whatever is causing it. It could also be scarring or a hematoma too. So we wait and try to be positive. I know i overdid it with my son's wedding last week and the holidays and when i take pain meds i dont feel the pain so i do too much.

       

      THanks for your concern Gerald and I hope you have better luck too. I know many on the forums who are very glad they had the surgery. So maybe you should look into it.

      Take care,

      Denise

    • Anonymous
      Ro
      Jan. 07, 2009

      Hi Gerard and Denise,

      I must tell you that I was really depressed this morning as the pains were horrible and I was told that I would not be able to meet with my doctor until the 4th february. I just wanted to crawl in a hole and die. Denise I did the tens machine as well but did not have any luck there. I am in London so I visited the massage shops and got...

      RHMLucky777

      Read More

      Hi Gerard and Denise,

      I must tell you that I was really depressed this morning as the pains were horrible and I was told that I would not be able to meet with my doctor until the 4th february. I just wanted to crawl in a hole and die. Denise I did the tens machine as well but did not have any luck there. I am in London so I visited the massage shops and got the works- foot massage for reflexology, belt for diirect stimulation, a power machine which could also be used directly , the tens machine....should I go on? I just want my life back, have not been able to smile for a while.

       

      I think the worst part of this whole thing is the inability to get a diagnosis. I sit with the doctors and see them trying to come up with ideas just to get me out of the office. Gerard when I did the epidurals they messed up and it caused me to be admitted in hospital for two weeks. I also did steroid injections- 17 or 18 at a time throughout the area but got no more than two days of relief.

       

      One doctor is offering to do surgery again just to go in and try to widen the area where the main nerves run. Its a fifty fifty chance and isnt really a great choice primarily since they cannot seem to locate where the nerve is trapped, if it is trapped at all. I am at my wits end, dont know how you all managed the pain for 7 years.

       

      Really could use a magic wand.

      Thanks for understanding

      Ro

    • Anonymous
      dmjames
      Jan. 07, 2009

      ro,

      hi, so sorry to hear what you are going thru, i too have been very depressed lately with all the pain, it really affects your ability to rationalize. I have found great relief, pre-surgery with lots of walking and swimming. And i use the hot tub, ice and heat and rubs often. Right now ice really helps because i think it is inflammation. I know your pain...

      RHMLucky777

      Read More

      ro,

      hi, so sorry to hear what you are going thru, i too have been very depressed lately with all the pain, it really affects your ability to rationalize. I have found great relief, pre-surgery with lots of walking and swimming. And i use the hot tub, ice and heat and rubs often. Right now ice really helps because i think it is inflammation. I know your pain and exactly where you are coming from. Did you say that you did not have the surgery for Piriformis surgery? Maybe you could consider it, but i dont know how insurance works in the UK if you have the surgery here. my surgeon is one of the best in the world, he just does not do much after-care. My friend from the forums, here in MI got 100 % relief with the surgery with him, so i am hopeful that maybe i just need more time. But it definitely helped the sciatica and kept my hips from going out all the time , that was causing more problems. Have you heard of prolotherapy? Look it up, it may be an option, i did it before the surgery and it helped some of my problems that were caused from the PS i believe, like SIJD, sacro-illiac joint dysfunction. I think that the problem is that PS can cause so many things and could go along with disk problems, etc. That's what my PT says. THere is an MRI which can show nerve irritations and exactly where they are coming from, called an MRN, try looking all of these things up as i cannot type that long. I also tried acupuncture but all it did was cause more discomfort as well as a cortisone injection 2 years ago when it first started and it caused me so much soreness and i don't think my GP knew where to put it or what she was doing. THere was no diagnosis at that time so it seems sillly now that i let her do that. but maybe with a guided injection it may help me. i am not sure but my nurse called me today after speaking with the dr. again and says that i prob. overdid it and that i cannot get any injections near the surg site because of the risk of infection right after surgery.

      well got to go for now.

      take care and call a friend! Like Gerald knows too prayer reallly helps.

      Denise

    • Anonymous
      dmjames
      Jan. 07, 2009

      ro and gerald,

      I have heard of hypnosis for lots of things, not sure how effective with pain, but what the heck? I also heard good things about a TENS unit, which is a drug-free treatment, where you hook up electrode to diff. parts of your body and it sends painless impulses that reroute the nerve message to/from your brain and thus you don't feel the pain....

      RHMLucky777

      Read More

      ro and gerald,

      I have heard of hypnosis for lots of things, not sure how effective with pain, but what the heck? I also heard good things about a TENS unit, which is a drug-free treatment, where you hook up electrode to diff. parts of your body and it sends painless impulses that reroute the nerve message to/from your brain and thus you don't feel the pain. I am considering asking for this. You can google more on it. Someone on the runners forum uses this. You do need a prescription and you can rent them too until you see if they work, i think they run 80-400$ depending on where you get it.

       

      My nurse from Cleveland just called me again and discussed my pain with my surgeon, Dr. Bohlman and they feel that I over did it and that it is the nerve, still irritated prob. because of how compressed it may have been before the surgery. She says sometimes it can take 6 mos. to a year for complete relief and they are very optimistic that i will get relief, to be very patient and take it easy. I asked about ultrasound, PT, massage, etc. so they will call me back on what they think. I feel that a few weeks to the PT will speed up healing, whatever is causing it. It could also be scarring or a hematoma too. So we wait and try to be positive. I know i overdid it with my son's wedding last week and the holidays and when i take pain meds i dont feel the pain so i do too much.

       

      THanks for your concern Gerald and I hope you have better luck too. I know many on the forums who are very glad they had the surgery. So maybe you should look into it.

       

      I will say prayers for both of you. It really gets me thru the bad days.

      Denise

       

       

    • Anonymous
      ro
      Jan. 08, 2009

      Hi Denise and Gerard,

      I have made it through today, they added new pain killers to my existing batch. Gerard I tried getting  the vitamin d but had no luck, is it a separate vitamin or do you get it in a combination?

       

      Still trying to locate a centre offering hypnosis, will let you know if I have any luck. Thanks for understanding.

      Ro

    • gebrazell
      Jan. 08, 2009

      Hi Ro

      In the US, vitamin D is readily available as a separate vitamin or in combination with vitamin C. It is an over-the-counter supplement and requires no prescription here. You may have heard vitamin D referred to a "the sunshine vitamin" because sunlight raises your vitamin D level naturally. In the US the "minimum daily requirement/value" is set at 400...

      RHMLucky777

      Read More

      Hi Ro

      In the US, vitamin D is readily available as a separate vitamin or in combination with vitamin C. It is an over-the-counter supplement and requires no prescription here. You may have heard vitamin D referred to a "the sunshine vitamin" because sunlight raises your vitamin D level naturally. In the US the "minimum daily requirement/value" is set at 400 mg.; however, recent studies have proven that 400 mg. is not nearly enough. Also, people, in general, do not get much exposure to the sun due to modern occupations and lifestyles. I am currently taking two 1,000 mg. tablets per day as a single vitamin, plus my calcium supplement also contains some vitamin D. I have heard of prescription strength vitamin D that is much, much higher. The good news is that it is very expensive, easily available, and is not toxic in reasonably high levels. You doctor can do a blood test to see if you are deficient in vitamin D. My test showed I was deficient even though I was taking over-the-counter vitamin D supplements. Check it out with your doctor if you have concerns. Also, if you do a search on the web on "vitamin D health benefits" you should get a great amount of information. Good luck you the new pain meds.

       

      Gerald

    • Anonymous
      Ro
      Jan. 09, 2009

      Hi Gerard,

      In the UK most of the supplements are combined, I am finding the calcium ones with the D3 and the glucosamine combined, but its not on the shelf by itself. The doctors here also dont take kindly to patients requesting tests,they are the "know it alls" who feel that the pain is existing in the head only.

       

      I am going to start the calcium...

      RHMLucky777

      Read More

      Hi Gerard,

      In the UK most of the supplements are combined, I am finding the calcium ones with the D3 and the glucosamine combined, but its not on the shelf by itself. The doctors here also dont take kindly to patients requesting tests,they are the "know it alls" who feel that the pain is existing in the head only.

       

      I am going to start the calcium and vit D3 today as I dont want to add pain meds on to the patch. Restarted the accupuncture as well just for the temporary relief.  My last option is to go back to my country and have the neurosurgeon do exploratory surgery there with a 50-50 chance of success offering.  That or the hypnotism. Really wish that I was as strong as you guys living with it so long.

       

      Ro

    • Anonymous
      Ro
      Dec. 10, 2009

      Hi Everyone,

      havent been online much as I have been fighting to keep positive. I am hoping that I am sharing great news now. i have finally been diagnosed and my problem was actually something called pudendal nerve entrapment. it affects both men and women and its the nerve within the pelvice region  that is not picked up with the mri or ct scans. yesterday...

      RHMLucky777

      Read More

      Hi Everyone,

      havent been online much as I have been fighting to keep positive. I am hoping that I am sharing great news now. i have finally been diagnosed and my problem was actually something called pudendal nerve entrapment. it affects both men and women and its the nerve within the pelvice region  that is not picked up with the mri or ct scans. yesterday i had my first real nerve block and FOLKS I am now lying here without much pain....after two long years finally!

      I am not certain that it would be an answer to everyone's problem but please try and check out the sites relating to it, imagine it fitted all my symptoms!

      good luck people, hope that it helps.

      Ro

    • Anonymous
      Anonymous
      Jun. 01, 2010

      Hi,  your pain sounds very much like mine.  My doctor said it was from the sciatic nerve, but at one time I thought I would need a hip replacement.  Sometimes tylenol helps and sometimes not.  I have had my pain more on than off for about 6 months and it seems to be going up above my left waist.  Sometimes the pain goes right out my...

      RHMLucky777

      Read More

      Hi,  your pain sounds very much like mine.  My doctor said it was from the sciatic nerve, but at one time I thought I would need a hip replacement.  Sometimes tylenol helps and sometimes not.  I have had my pain more on than off for about 6 months and it seems to be going up above my left waist.  Sometimes the pain goes right out my toes.  I guess this is why the dr. thinks it is sciatica.  If you do not have this problem, I find that you have no clue and sometimes people think I am really weird when I speak about this.  I am glad to read so many people's comments, but I am sorry we all have this problem with what is probably no relief.  Beverly

  • Anonymous
    Denise James
    Apr. 18, 2008

    Hi, I too have suffered this strange pain for 2 years now after I snapped backward on my riding mower to get under a tree branch. I was already in P.T. for piriformis syndrome which I attribute to too much shoveling, gardening, driving. I also had an MRI and xrays which showed L5 bulging disc and some arthritis in S1 area. I am 46 and yes this has been absolutely...

    RHMLucky777

    Read More

    Hi, I too have suffered this strange pain for 2 years now after I snapped backward on my riding mower to get under a tree branch. I was already in P.T. for piriformis syndrome which I attribute to too much shoveling, gardening, driving. I also had an MRI and xrays which showed L5 bulging disc and some arthritis in S1 area. I am 46 and yes this has been absolutely debilitating. I cannot work anywhere. I have to keep walking around all day or lay down on heat or ice. I went to Italy last fall and for 10 days we walked our little legs off and I had very little pain and was able to sit some more. When I got back, pain started again, because it was winter here in Michigan and I do not have the energy to do a whole lot when it's so gloomy out. Needless to say, I suffer from depression and anxiety now and was on Lexapro for 6 months last year and I felt a lot better so went off and then it came back months later. I never fully recovered but felt a lot better. I cannot bend or squat much or sit or stand much. Anyway a few months ago I tried Fish Oil and the burning pain went away most of the time but still get horrible aching in SI joint area when sitting and standing but at least the burning was not bad anymore. So I heard about Prolotherapy, have to google it because I can't be on here too long, get very sore. Tried that, had 4 treatments now and saw a slight improvement, but then got worse. So I wait another month and go back to that dr. and see if it healed my SI joint, if that was the problem. ??? So frustrated, been having massages weekly and chiro. for 2 years. Lots of PT got me out of the worst pain, and tried acupuncture and no help. I feel for you all. Maybe the Vitamin D thing is the answer. I do swim 4x a week too. It and the hot tub helps but still can't sit long. I am already taking 1000 iu of vitamin D. I will up it to 2000 and see if that helps. Iam also self supplementing myself for the depression, did not like the way Lexapro made me feel, like a zombie. But now I have to take Xanax just to sleep ev. nite. Really hate taking the meds. I take ibuprofen on bad days and once in awhile DArvacet if I have to sit a lot. But i still suffer for a week if I do that.

     

    Well got to go move around.

    good luck!

    Denise

  • Anonymous
    Mary
    Mar. 15, 2008

    I am 47 and I too have been suffering these symptoms for a few years, and the pain is getting worse. It began in my left hip which ached at night only. Eventually the pain went into both hips, and I felt it during the day. I've had x-rays that found no signs of arthritis. One doctor suggested I had a somewhat shallow acetabulum (I don't know human anatomy...

    RHMLucky777

    Read More

    I am 47 and I too have been suffering these symptoms for a few years, and the pain is getting worse. It began in my left hip which ached at night only. Eventually the pain went into both hips, and I felt it during the day. I've had x-rays that found no signs of arthritis. One doctor suggested I had a somewhat shallow acetabulum (I don't know human anatomy very well so I hope I'm using the correct term) which may be contributing to the pain, and an orthopedist suggested that daily, frequent, and long periods of stretches would cure the pain within a month. I have not yet felt motivated enough to try the daily stretches for more than a couple of days, so I can't testify as to whether that works or not. One chiropractor suggested taking daily walks that allowed a full swing of the arms. 

     

    I am struck by how many of these posts mention long, daily periods driving in the car. I also spend a couple of hours a day driving, and I spend a lot of time sitting in front of a computer. I have concluded that all of this sitting, combined with a lack of exercise, is contributing to if not causing my pain, for the following anecdotal reason: I was in Paris last summer and I spent a lot of time walking every single day. At first I felt very stiff and sore, and my lack of stamina was truly discouraging. However, I didn't want to miss out on anything, nor was I going to allow my discomfort to prevent my children from seeing all the sights, so I really pushed myself. I took an ibuprofen before we left for the day, and as needed. It wasn't a cure, but it did seem to help. By the time we came home six weeks later, I had no pain in my hips and good muscle tone in my legs and was rarely using ibuprofen. I felt better than I had in 10 years, the last time I had followed a fitness regimen. 

     

    Did I continue a program of walking regularly? No. And within weeks the pain was back with a vengeance. Today my discomfort is such that I've been searching the internet yet again for an easy solution. Sitting again rather than just getting out there and taking a walk.

     

    I am predisposed to using the path of least resistance, and that always involves sitting! It's hard to get started exercising when in pain. I have very full life and sometimes I wonder if I'm using it as an excuse— I consistently choose to accommodate the full schedules of my 4 children before my own, shuttling them all around the place to their numerous activities and 4 different schools, while leaving absolutely no time for myself. Other excuses include my painful bunions, housework, etc. But I feel confident that if I were to start walking regularly I would see an improvement. Give it a try if possible, hopefully you have more self-discipline than I do!

    • gebrazell
      Mar. 15, 2008

      Mary,

      Thank you for responding. Although I am retired now and don't have as many required scheduling activities, I do stay on the move most of the time. This is in part to avoid sitting. I am always doing light yard work and climb my stairs up to 25 times a day. But I fear this is not the same as a regular exercise regimend. I was walking my small dog several...

      RHMLucky777

      Read More

      Mary,

      Thank you for responding. Although I am retired now and don't have as many required scheduling activities, I do stay on the move most of the time. This is in part to avoid sitting. I am always doing light yard work and climb my stairs up to 25 times a day. But I fear this is not the same as a regular exercise regimend. I was walking my small dog several times a day, but she developed a hip problem too, so she is unable to accompany me and that discourages me from walking. My situation had improved when I increased my intake of Vitamin D, as recommended in a Mayo Clinic newsletter (see my earlier post); however, just over the last 10 days or so, my pain has intensified again. I am beginning to wonder if the cause could be something environmental with the return of warmer weather (my worse flare up was last summer). Anyway, you suggestion of more exercise makes sense, and I will give it a try. Thanks again.

    • Anonymous
      Butt-Pain Man
      Mar. 15, 2008

      Wow.  Add my name to the list of people who say their symptoms mirror yours.  I could desciribe my symptoms in detail, and various "treatments" I have endured, but much of it would just be repeating what others have said.  I'm starting my 7th year of this.  My employer was nice enough to give me a standing desk, so I can stay...

      RHMLucky777

      Read More

      Wow.  Add my name to the list of people who say their symptoms mirror yours.  I could desciribe my symptoms in detail, and various "treatments" I have endured, but much of it would just be repeating what others have said.  I'm starting my 7th year of this.  My employer was nice enough to give me a standing desk, so I can stay off my butt for most of the day.  It's a great help.  Last spring, I was presribed Lyrica by one doctor and Vitamin D by another.  I started them both at the same time which was dumb, because something really helped knock down the pain.  But who knows which one?  Well, I continued to take Lyrica through the summer but let the Vitamin D prescription lapse and still felt pretty good so I  thought the Lyrica was the answer.  However, once fall and winter arrived (I live in Wisconsin), the pain flared up again and has remained high to this day.  So what happened?  Was it the darkness of a Wisconsin winter and complete lack of Vitamin D?  That's my thought right now.  I heard a a story on NPR today touting the benefits of Vitamin D, so I am going to try that again.  My presribed dose last year was 10,000 IU, which I took twice a week.  Until I see the doctor again, I'm going to try the stuff off of store shelves and start with 1200 IU per day.  The sun will be returning too, so we'll see what happens.

      It is great to find this web site and see that others are suffering too.  Keep hanging on
      .  It's hard sometimes and I have certainly thought about suicide several times in the last six years.   But I didn't do it (obviously!) and recently welcomed my baby daughter into the world!  Now I've got plenty of reasons to keep trying.

    • gebrazell
      Mar. 16, 2008

      Dear "Butt-Pain Man" (that sounds a bit too familiar, lol),

      Isn't it strange that most of us never knew that anyone else suffered with this burning butt pain until we found this site. Why doesn't the medical people ever mention this? I guess we have to start our own support group. I can just imagine a couple of cute acronyms for a title, but...

      RHMLucky777

      Read More

      Dear "Butt-Pain Man" (that sounds a bit too familiar, lol),

      Isn't it strange that most of us never knew that anyone else suffered with this burning butt pain until we found this site. Why doesn't the medical people ever mention this? I guess we have to start our own support group. I can just imagine a couple of cute acronyms for a title, but I will leave that to your imagination.

       

      Anyway, your post told me something that I did not even know previously, i.e. that there is a prescription strength of Vitamin D. I take the over-the-counter vitamin and wondered if I was overdoing it. When I had my blood tested earlier this month, I was slightly below the 30-80 desired reading. I think my Vitamin D level was 28. I increased my over-the-counter dosage and soon afterward I started getting a mild case of the hives after the evening dose. I stopped for a while and the hives went away, so I am gradually increasing the dosage again.

       

      Lyrica did help my butt burning, but I had to give it up because of the severe side effects...dizziness, lack of coordination, fuzzy thinking, dark thoughts, etc.

       

      Let us know how the resumption of Vitamin D works for you. And congratulations on the new daughter--it makes life worth living.

       

      Gerald

  • Anonymous
    lindaann
    Mar. 12, 2008
    I am 61 years old and for several years now, I have been plagued with a pain in my left hip - especially when I sleep.   It is getting worse - the burning sensation is getting to be so bad that I am now unable to sleep well at night.  When I try to turn, the pain makes it almost unbearable to move.   When I get up and start moving around,...
    RHMLucky777
    Read More
    I am 61 years old and for several years now, I have been plagued with a pain in my left hip - especially when I sleep.   It is getting worse - the burning sensation is getting to be so bad that I am now unable to sleep well at night.  When I try to turn, the pain makes it almost unbearable to move.   When I get up and start moving around, it gets better but if I do something like using a heavy vacuum, the burning sensation starts immediately and the pain just radiates from that one spot on my left buttock.  I usually was OK during the day but I am not finding that the burning sensation and pain is lasting for a couple hours after I have gotten up and then comes and goes during the day, depending on what I am doing.  I have been trying to figure out what this is - it is not going down my leg so it can't be sciatic.  Is this something that any of you are experiencing and have you found any relief for it or any reason for this?  I am starting to get desperate here....
  • Anonymous
    Ken Callaham
    Feb. 17, 2008

    Hi Gerald,

    Your symptoms sound virtually identical to mine. I've been dealing with this problem for 13 years. I have seen many doctors, chiropractors, physical therapist, etc. I even had back surgery (a fusion at L5/S1) to try and eliminate this issue. It has been diagnosed as piriformis syndrome, sciatica, myofascial pain syndrome, alignment problems, etc....

    RHMLucky777

    Read More

    Hi Gerald,

    Your symptoms sound virtually identical to mine. I've been dealing with this problem for 13 years. I have seen many doctors, chiropractors, physical therapist, etc. I even had back surgery (a fusion at L5/S1) to try and eliminate this issue. It has been diagnosed as piriformis syndrome, sciatica, myofascial pain syndrome, alignment problems, etc.

    My understanding is this: there are muscles in my glutes that tend to spasm (the piriformis muscle is probably the main culprit, but not the only one). When circulation is reduced, as in prolonged sitting, they get aggravated and go into spasm. Usually, I can sit for anywhere from 30 minutes to an hour or so on a comfortable chair with no problem, maybe just a little discomfort. But once I push it too far and these knots clamp down, I have no tolerance for sitting.

    The good news is that if I can avoid sitting and just keep moving throughout the day, the problem will clear up over several weeks. It took me a lot of years to get to this point, where I can live a pretty normal and pain free life 80 - 90% of the time.

    I was very fortunate in being able to retire at a very young age. I could not tolerate working a desk job, or even a long commute. But given that I don't have to do that, I'm doing quite well between flare-ups. The key for me is to not be too sedentary, but also to not push it too hard. (I've tried golf and that caused a flare up the very first time!) Several years ago, I developed plantar fasciitis in my feet and so took up swimming to be able to keep exercising, and my buttock pain pretty much went away! My tolerance for sitting went up tremendously. I think swimming deserves much of the credit. Now here's a really counterintuitive fact - for me, 4 or 5 days of snow skiing will usually eliminate a flare-up! My supposition is that working the muscle a lot during the day, but never too much, flushes extra blood flow through it and gradually eliminates all of the extra toxins (e.g. lactic acid) that have built up. Once this is done, the muscle releases (that is, it resumes a more normal tonicity). Once this is achieved, life can get back to normal. Please don't think I'm suggesting that anyone rush out and snow ski, this could end up doing way more harm than good! I'm just saying it works for me. Perhaps you could find something you enjoy that can keep you gently working the glute muscles throughout the day and have a similar result.

    All of that said, this is a real disability. I would not tolerate a desk job, or a daily commute of several hours. But I can enjoy a reasonably long lunch or dinner, enjoy a movie, etc. Life is good when you're not in pain!

    At this moment, I must confess that I am having a terrible flare up. I decided to go back to school and the sitting is just too much. I am struggling to make adjustments to get over the flare up, but not successful yet. However, I still feel confident that if I could just eliminate the sitting for several weeks, step up the swimming, and keep moving, the flare-up would end.

    I hope all of this gives you an idea that might help. Good luck to you.

     

    Ken

    • gebrazell
      Feb. 17, 2008

      Hi Ken,

      I appreciate your response and the sharing of your personal situation. Much of what you have detailed parallels experience I have gained from trial and error. My pain level has improved somewhat since I increased my intake of Vitamin D. I know that sounds too simple and elementary, but I picked up the suggestion second hand from an article in the...

      RHMLucky777

      Read More

      Hi Ken,

      I appreciate your response and the sharing of your personal situation. Much of what you have detailed parallels experience I have gained from trial and error. My pain level has improved somewhat since I increased my intake of Vitamin D. I know that sounds too simple and elementary, but I picked up the suggestion second hand from an article in the Mayo Clinic's newsletter. I gave it a try and my pain level is much lower unless I sit for hours on end. I don't travel much due to the cumulative effect of pressure on the buttocks. I'm afraid if I can make it to a destination, I might not be able to sit long enough to make it back home!!  Not a good situation, obviously. 

       

      I was never a good swimmer, but my rheumatologist did suggest that I look at water aerobics to keep the muscles toned and to avoid impact on my joints.

       

      I also retired somewhat early (58 y/o at the time). I was a banker and the job required a lot of sitting. I shudder to think how I would have been able to continue with my current health problems.

       

      I wish you well on getting over the flareup you are currently experiences and on your path to good health.

       

      Gerald

    • Anonymous
      denise
      Jul. 23, 2008

      Ken,

      Hi, I have left a few posts to some of you about the diagnosis of Pirifomis Syndrome, which includes most of the symptoms that you talk about. I am happy to say that i found out that it was my diagnosis and i had the surgery for it to remove the muscle. I am 2 weeks post surgery and doing pretty good, but it will take 3 months for full recovery and i may...

      RHMLucky777

      Read More

      Ken,

      Hi, I have left a few posts to some of you about the diagnosis of Pirifomis Syndrome, which includes most of the symptoms that you talk about. I am happy to say that i found out that it was my diagnosis and i had the surgery for it to remove the muscle. I am 2 weeks post surgery and doing pretty good, but it will take 3 months for full recovery and i may have to have the surgery done on the other side also because i had pain on both sides. I just wanted you to maybe look into the possibility of that being your diagnosis. 13 years is way too long to suffer with this. I suffered for 2 years and had almost the same incorrect diagnosises and treatments with no luck until I saw Dr. Henry Bohlman and Cleveland University Hospital. He is not real expensive like some in CA and from what i am reading on the running forums site very successful and one of the best surgeons in the world. If you google piriformis surgery, and all that you will find lots of info.to take to a dr. and convince him/her that it exists. Or go to cleveland. It is well worth it! I wish you the best of luck and i made a commitment to myself that if I found relief to help all others who went thru what i did. good luck.

      Denise

    • Anonymous
      AlexC
      Nov. 12, 2009

      Hi Stacey,

       

      My name is Ken, I'm a 29 year old guy who has similay symptoms both to what you described and what Gerald described in the thread where I found your post. I'm putting together a small list of people with similar symptoms in hopes that we can help one another. If you would like to be included please respond. My email is amciem@gmail.com

       ...

      RHMLucky777

      Read More

      Hi Stacey,

       

      My name is Ken, I'm a 29 year old guy who has similay symptoms both to what you described and what Gerald described in the thread where I found your post. I'm putting together a small list of people with similar symptoms in hopes that we can help one another. If you would like to be included please respond. My email is amciem@gmail.com

       

      -Alex

  • Anonymous
    veronica canuso
    Jan. 21, 2008
    I started with burning feet, numbness from ankles up, and have been diagnosed with peripheral neuropathy. Do not have diabetes and have had  all test and last skin biopsy showed positive. Am on Lyrica, burning feet have gone away but now have the buttock problems.  Have you seen a neurologist?
    • gebrazell
      Jan. 21, 2008

      Hi Veronica,

       

      Yes, I saw a neurologist pain mgt. specialist. He suspected "nerve damage" and referred me to another neurologist who did a series of tests using equipment with needles and electrodes. He said my nerve responses were equal to that of a 19 y/o (I am 66!). He sent me back to the pain mgt. neurologist who still treated my problem...

      RHMLucky777

      Read More

      Hi Veronica,

       

      Yes, I saw a neurologist pain mgt. specialist. He suspected "nerve damage" and referred me to another neurologist who did a series of tests using equipment with needles and electrodes. He said my nerve responses were equal to that of a 19 y/o (I am 66!). He sent me back to the pain mgt. neurologist who still treated my problem as "non-specific nerve damage".  I was on Lyrica for about 3 months, it seemed to have some positive effect on the buttocks pain; however, I could not tolerate the side effects--hand tremors, confusion, distorted vision, dizzyness. They wanted to then switch me to Neurontin, an older drug; however, the possible side effects listed were very similar to Lyrica. I got it filled, but never took any of it.  Today, I am some better--see my comment above about increased Vitamin D intake. It sounds too simple, but I don't know what else to attribute it to. You might try it. I would be interested if it helps you.  Give it a week. I take 1800 mg. daily, spread out in 3 doses.

       

      If you can take the Lyrica, that is good and I wish you well.

       

      Gerald

    • Anonymous
      Nancy 3
      Apr. 05, 2009

      Hello

      I wounder if anyone has had any of these pains after a flu shot.  In Oct. had flu shot when nose was moist.  Came down with cold/chills on week end.  Woke Mon. with pain in hip/low back.  By Fri. right hip was stinging and on fire.  Pulled a muscle in piriformis area and was in Bed for 2 weeks with pain meds.  Had spasums...

      RHMLucky777

      Read More

      Hello

      I wounder if anyone has had any of these pains after a flu shot.  In Oct. had flu shot when nose was moist.  Came down with cold/chills on week end.  Woke Mon. with pain in hip/low back.  By Fri. right hip was stinging and on fire.  Pulled a muscle in piriformis area and was in Bed for 2 weeks with pain meds.  Had spasums in outer thigh.  Felt like stiches being pulled on top of upper leg.  I think things are improving but it is very slow.  I still have trouble sitting and at the end of the day I am sore in the piriformis area and lower back.  All my problems seem to be on the right side.  Before the flu shot every thing had been just fine.

    • gebrazell
      Apr. 05, 2009

      Nancy, I have never made any connection between flu shots and the hip pain; however I do try to get a flu shot every year. I've never had any known side effects from the flu shots. My right side is the worse also. I am approaching my 7th or 8th year of this. It's not seasonal with me. I have times that are worse or better, but it is always there. I will get...

      RHMLucky777

      Read More

      Nancy, I have never made any connection between flu shots and the hip pain; however I do try to get a flu shot every year. I've never had any known side effects from the flu shots. My right side is the worse also. I am approaching my 7th or 8th year of this. It's not seasonal with me. I have times that are worse or better, but it is always there. I will get steriod injections later this month for the pain. My pain management doctor now calls my problem Bursitis of the Isheal Tuberosity. All I know is it hurts!

  • Anonymous
    Dale Meierdiercks
    Jan. 15, 2008
    I have had similar sounding symptons since 2004 when I had auto accident. I was hit by a truck, landing on my buttock and elbows. I have had pain on either side of my tailbone that radiates down the outside of my legs to the outside of my feet. After about 20 minutes of sitting this condition starts. I experiance numbing much like when your limbs go to sleep...
    RHMLucky777
    Read More
    I have had similar sounding symptons since 2004 when I had auto accident. I was hit by a truck, landing on my buttock and elbows. I have had pain on either side of my tailbone that radiates down the outside of my legs to the outside of my feet. After about 20 minutes of sitting this condition starts. I experiance numbing much like when your limbs go to sleep then the pain starts. The only real relief I have had is from massage. I have had 2 rounds of PT with several rounds of Chiropractic visits. I have also had 3 shots in my spine for pain, none of them did much good. The latest from my doctor was that it may be in my head. Go figure. Haven't had a good nights sleep since 2004, but it's in my head. Hope this helps
    • gebrazell
      Jan. 16, 2008

      Hi Dale,

       

      As far as I know, my buttock pain is not due to an accident. Please read the response I made just previously to Tina about some relief that I have found from taking higher doses of Vitamin D. It has helped me, though I am not totally free on pain in that area.

       

      Best of luck,

       

      Gerald

       

  • Anonymous
    Tina
    Dec. 16, 2007

    Dear Gebrazell,

    I cannot believe I found this site! You are not

    alone. I have been having pain (burning when sitting) for about 6 years also. It is getting worse. I drive an hour to work & an hour back & it is excruciating some evenings coming home. I immediately get the IcyHot & the ice pack when I get home. I have tried the chiropractor & sometimes...

    RHMLucky777

    Read More

    Dear Gebrazell,

    I cannot believe I found this site! You are not

    alone. I have been having pain (burning when sitting) for about 6 years also. It is getting worse. I drive an hour to work & an hour back & it is excruciating some evenings coming home. I immediately get the IcyHot & the ice pack when I get home. I have tried the chiropractor & sometimes it helps & sometimes not. She uses an ultrasound treatment. I talked with my GP when I first started having symptoms & he said it was bursa sac related & I could get injections (which I didn't). I recently went to an orthopedic Dr.for treatment of tennis elbow

    & under threat of my husband asked him about the butt pain. I had the MRI- no butt cancer, just a bulging disk in my spine. Now,

    I know what back pain is like & I may have some little thing not exactly right there but he is saying that nerve damage can result & that is where the pain is coming from. It always feels like it's in the tissue though. I'm very doubtful. I think it's autoimmune related. Ihave had so much weird stuff happed to me in menopause that whatever

    happened next just write it off as crazy menopause woman. But this pain is so debilitating, I want a real answer.

    Your pain seems very intense & I'm really glad you wrote & all the other people wrote too.

    Hopefully we can all find an answer. Thank you.

    TF

    • gebrazell
      Jan. 16, 2008

      Hi Tina, Thank you for your input. Let me share something that I read recently that has helped me.

       

      I recent received a solicitation to subscribe to the Mayo Clinic's news letter. As is typical of these solicitations, they included a few testimonials from subscribers about how they had been helped by the information from the newsletter. Well, one of...

      RHMLucky777

      Read More

      Hi Tina, Thank you for your input. Let me share something that I read recently that has helped me.

       

      I recent received a solicitation to subscribe to the Mayo Clinic's news letter. As is typical of these solicitations, they included a few testimonials from subscribers about how they had been helped by the information from the newsletter. Well, one of these was from a guy who said he had suffered from very similar symptoms to what I have described on here. He said he read an earlier article in the newsletter that suggested that an increase in Vitamin D could help this type of undiagnosed "butt" pain and burning. The writer said he tried it an got relief within only a few days. I thought "well, Vitamin D is cheap and it probably couldn't hurt you", so I tried it. I have to say, I am having less pain in that area, and any relief is most welcome. The writer did not specify how much Vitamin D he was taking, but I already took a multi-vitamin that contained 400 iu's, as well as a calcium - plus D supplement that contains an additional 400 iu's. I have since added a separate vitamin D supplement of 1,000 iu's. This makes a total of 1800 iu's that I take daily. I take part in the morning and the remainder in the evenings.  We also get Vitamin D from the sun, but I am not outside that much in the winter months.

       

      You might want to give this a try. I've been reading more and more articles about the benefit of Vitamin D and how the established minimum daily requirements need to be increase.

       

      I subscribed to that newsletter based on this one situation.

       

      Best of luck to you in finding an answer to your pain situation.

       

      Gerald

    • Anonymous
      AlexC
      Nov. 12, 2009

      Hi TF, My name is Alex, I'm a 29 year old guy who has similar symptoms both to what you described and what Gerald described in the thread where I found your post. I'm putting together a small list of people with similar symptoms in hopes that we can help one another. If you would like to be included please respond. Perhaps you already have some people you are...

      RHMLucky777

      Read More

      Hi TF, My name is Alex, I'm a 29 year old guy who has similar symptoms both to what you described and what Gerald described in the thread where I found your post. I'm putting together a small list of people with similar symptoms in hopes that we can help one another. If you would like to be included please respond. Perhaps you already have some people you are in touch with? I'm looking for people who can collaberate to help eachother with these symptoms as they seem to be so mysterious. My email is amciem@gmail.com -Alex

  • Anonymous
    Stacey
    Oct. 30, 2007

    I swear you sound just like me.... but I have no answers either!  PLEASE let me know how your story continues to unfold.  I'm a 28 year-old female and have been experiencing the same kind of pain for about 6 years now.  I dread having to sit longer than 20 minutes because the pain is so intense and unbearable.  I drive an hour to and...

    RHMLucky777

    Read More

    I swear you sound just like me.... but I have no answers either!  PLEASE let me know how your story continues to unfold.  I'm a 28 year-old female and have been experiencing the same kind of pain for about 6 years now.  I dread having to sit longer than 20 minutes because the pain is so intense and unbearable.  I drive an hour to and from work everyday, and it's practically torture.  I also have painful flare-ups in random joints (knees, shoulder, elbow, wrist, toe) that are just as painful, however I'm not convinced it's related to my sitting pain.  6 years ago I saw a rheumatologist, did a series of bloodtests, x-rays, and an MRI... and was never "diagnosed" with anything.  I remember trying Vioxx, Flexeril, and neither helped.  I did physical therapy for awhile and found no relief.  I even saw a pain specialist for awhile and recieved cortisone shots in my back 3 times, and felt no different. 

     

    Just last month I decided to start the process all over again.  I'm going to Hawaii next summer, and the thought of a 9-hr plane ride is rather frightening... so I figured I need to find some relief!  I again went to see a rheumatologist.  She did the same series of tests (bloodwork, pelvic x-ray, and MRI).  While we waited for the results, she gave me a prescription for Cymbalta, explaining to me that it can be used to treat certian kinds of pain.  Well I only took 1 pill and decided I'd never take it again.  I had to call in sick to work and fainted in the shower 2 days after taking only 1 pill.  So then she tried Mobic.... I took it for 1 month and felt no relief whatsoever.  I even had a bad flare-up in my left shoulder and right elbow while I was on it.  So I stopped taking it.  My X-ray came back normal, as well as the MRI.  She said there was a "slight" elevation of the RA factor in the bloodwork, but it could be nothing.  So once again, no "real" answers.  She suggested I try the Mobic (which I've now stopped) and said to come back in 4-6 months.  I'm so frustrated and I'm not sure what to do next?  I've never seen a chiropractor, so that's been a thought.  It's comforting to know I'm not the only one out there like this.  I just wish I could find a way to at least lessen the pian. Any suggestions or advise is definitely WELCOMED!  We NEED HELP!  Even now as I sit and type this I'm starting to become very uncomfortable... the pain is so intense I could cry.

     

    I feel your pain...

    Stacey

    • gebrazell
      Oct. 30, 2007

      Stacy,

      Bless you for responding to my post. I am so sorry that you are suffering. Our symptoms sound very similar, and the routes we have taken to seek relief are amazingly similar.

       

      I know I have osteo arthritis in my hands (having surgery to replace the thumb joint next month), but the x-rays of my hips looks normal to the doctors.

       

      When my hand surgery...

      RHMLucky777

      Read More

      Stacy,

      Bless you for responding to my post. I am so sorry that you are suffering. Our symptoms sound very similar, and the routes we have taken to seek relief are amazingly similar.

       

      I know I have osteo arthritis in my hands (having surgery to replace the thumb joint next month), but the x-rays of my hips looks normal to the doctors.

       

      When my hand surgery is over, I plan to give Neurontin (prescribed by the pain mgt. doctor) a try. Lyrica gave some relief but was causing some frightening side effects...felt like I was losing my mind.

       

      You mentioned that you might see a chiropracter. I've not done that yet, but what about acupuncture? I know several people who have gotten relief from acupuncture. If the Neurontin doesn't work,the pain mgt. people say they have nothing else to offer.

       

      Please keep me posted on your progress. Also, you can reach me directly at

      gebrazell@msn.com.

       

      Gerald

    • Anonymous
      Kathy
      Mar. 22, 2010

      Sorry to hear about your pain.  My pain began after the first two weeks of mostly bed rest following foot surgery.  Since I couldn't put any weight on my repaired foot for six weeks, my restrictions limited me to sitting or laying, with a little hopping back and forth on one foot.  Within two weeks of bed rest, my buttocks began to burn fiercely...

      RHMLucky777

      Read More

      Sorry to hear about your pain.  My pain began after the first two weeks of mostly bed rest following foot surgery.  Since I couldn't put any weight on my repaired foot for six weeks, my restrictions limited me to sitting or laying, with a little hopping back and forth on one foot.  Within two weeks of bed rest, my buttocks began to burn fiercely bi-laterally.  It felt like the layers of my skin had been separated and were rubbing back and forth like sandpaper on sandpaper.  The pain disappeared almost completely when I laid on my stomach or stood up...and I couldn't find a trigger point.  The pain has stayed with me for six weeks now with no easing.  Prescription pain meds have helped only a little.  Now that I can walk with a boot on my repaired foot, I have seen no difference in the pain when I sit and/or lay.

       

      My doctors have suggested bruised bones (from the long bed rest) and possibly trochanteric bursitis.  Neither seems to exactly fit what I feel.  I wonder if you're experiencing the same symptoms.  It's sure miserable....and extremely limiting.

       

      Hope you're feeling better.

       

      Kathy

    • trb8866
      Nov. 19, 2007

      Wow, I just recently joined this site and I am reading exactly what I am going through now. I have extreme pain in my right hip area,pelvic area and now it has gone up to my right side (around my rib cage area). I was diagnosed with bulging discs in my back as well as narrowing of the spine.  I was also diagnosed with fibromalgia. I am currently taking...

      RHMLucky777

      Read More

      Wow, I just recently joined this site and I am reading exactly what I am going through now. I have extreme pain in my right hip area,pelvic area and now it has gone up to my right side (around my rib cage area). I was diagnosed with bulging discs in my back as well as narrowing of the spine.  I was also diagnosed with fibromalgia. I am currently taking oxycontin and oxycontin ir for my breaktrough pain. But it now seems to not work as well as it use to. I still have extreme pain in my right hip, pelvic area, behind my right knee and it has gone into my rib cage area. I also failed to mentioned both my hands hurt and swell badly as well as my feet. I see a pain specialist every month and all we do is increase the pain meds. Now they are not working like they use to. I am currently being tested again for rm, auto-immune disease, and lupus. I am at my wits in. I would like to ask if there are any other pain meds that might work better, like the fenytanal patch? Any comments would be greatly appreciated.

       

      Tammy

    • gebrazell
      Nov. 19, 2007

      trb8866: I am so sorry for the pain you are enduring. Your symptoms sound even worse than my own. I am not familiar with the patch you described. I know we get to the point that we would try almost anything for a day's relief.

       

      I have temporarily, at least, stopped going to the pain specialist. Like you said, their only solution is more pills.

       ...

      RHMLucky777

      Read More

      trb8866: I am so sorry for the pain you are enduring. Your symptoms sound even worse than my own. I am not familiar with the patch you described. I know we get to the point that we would try almost anything for a day's relief.

       

      I have temporarily, at least, stopped going to the pain specialist. Like you said, their only solution is more pills.

       

      I was to have surgery to correct degeneration of my thumb joint which was caused by osteo-arthritis last week, but in getting tests done to see if I could be sedated for the surgery, they have discovered some abnormality with my heart. Hopefully, that is not a significant issue since I've never had problems with coronary disease in the past.

       

      I hope that someone can give you relief.

    • trb8866
      Nov. 20, 2007

      gebrazell: Thank you for your reply. It is so nice to know that there are others out there like me. I have felt so alone for so long. I hope everything is ok with your heart. I will keep you in my prayers.

      Tammy

    • Anonymous
      Lauren Leveque
      May. 27, 2008

      Not sure how this works, or if you'll get this message, Lynda, but I found your post after searching the web for "chronic pain at 28 years old".  You sound quite a lot like me in terms of the pain you were experiencing at the time of that post.  I feel like my body is just falling apart and dealing with the pain is so exhausting.  I think one...

      RHMLucky777

      Read More

      Not sure how this works, or if you'll get this message, Lynda, but I found your post after searching the web for "chronic pain at 28 years old".  You sound quite a lot like me in terms of the pain you were experiencing at the time of that post.  I feel like my body is just falling apart and dealing with the pain is so exhausting.  I think one of the worst things is not having an answer - the fear that someone is missing something that's going terribly wrong with me is eating me up.  I have two amazing little girls, a great husband and I love my life and want so desperately to be well.  I fake that I feel well just because I wish I felt well and I'm tired of people worrying about me.  Have you gotten anywhere with your pain?  Please do contact me if you find this message.

       

      lleveque@horiuchisolien.com

    • Anonymous
      e macdonald
      May. 28, 2008

      could it be that some of us suffer from food intolerances?  I am on a yeast free diet right now (the last 3 weeks) and I have seen some improvements but it still too early to tell for sure.  My pain started in my feet a year ago and several months later moved to my hips which was diagnosed as bursitis.  However two months later, I began having...

      RHMLucky777

      Read More

      could it be that some of us suffer from food intolerances?  I am on a yeast free diet right now (the last 3 weeks) and I have seen some improvements but it still too early to tell for sure.  My pain started in my feet a year ago and several months later moved to my hips which was diagnosed as bursitis.  However two months later, I began having sore and burning muscles/ tissue in the glutes and back pelvic area as well as real difficulty digesting... I too have a hard time sitting or standing in one position for even short periods. But now that I have been off of yeast and sugar, it seems to be improving, so I hope it continues.  I wa sure I had intestinal problems or even colon cancer but all tests have come back negative...

      Anyone ever gone down the route of the food intolerance thing??

      EM

    • Anonymous
      casey
      Feb. 08, 2009

      stacey, i have similar pain, for 3 years now, but i'm able to relieve it for long sits with ice pack.  have you tried ice? i've pursued many solutions/diagnosis, including 4 days at the mayo clinic, with no change.  currently pursuing possiblity of piriformis syndrome.

       

      casey

       

       

       

    • Anonymous
      AlexC
      Nov. 12, 2009

      Hi Stacey,

       

      My name is Alex, I'm a 29 year old guy who has similay symptoms both to what you described and what Gerald described in the thread where I found your post. I'm putting together a small list of people with similar symptoms in hopes that we can help one another. If you would like to be included please respond. My email is amciem@gmail.com

       ...

      RHMLucky777

      Read More

      Hi Stacey,

       

      My name is Alex, I'm a 29 year old guy who has similay symptoms both to what you described and what Gerald described in the thread where I found your post. I'm putting together a small list of people with similar symptoms in hopes that we can help one another. If you would like to be included please respond. My email is amciem@gmail.com

       

      -Alex

    • jsupko
      Jan. 18, 2011

      Hi Alex,

       

      I too suffer with this pain. I am a 58 year old man, 6'6" tall, 220lbs. I have been experiencing this pain for the past three years. My pain level has incresed to the point that I can no longer work. Sitting and even lying down is sheer toture. I have had a Gluteal Vein embolization, an L4-L5 discectomy , and right piriformis realease...

      RHMLucky777

      Read More

      Hi Alex,

       

      I too suffer with this pain. I am a 58 year old man, 6'6" tall, 220lbs. I have been experiencing this pain for the past three years. My pain level has incresed to the point that I can no longer work. Sitting and even lying down is sheer toture. I have had a Gluteal Vein embolization, an L4-L5 discectomy , and right piriformis realease surgery and the burning pain continues, both sides. I have tried pain meds which I use sparingly, I have been on Lyrica, and Neuronton both which really don't help the pain and made me feel loopy. I also take Lodine, an anti inflammatory, which seems to help some.

       

      I like your idea of bringing people together who suffer with this problem . Please include me . I hope we can help one another.

       

      Thanks,

      John

    • Anonymous
      Jerry T.
      Feb. 11, 2010

      hi stacy.  unfortunately, i don't have any suggestions.  i've been suffering with burning pain in my buttocks and the upper back part of my legs for 13 years.  it was diagnosed as demylinating neuropathy.  for some unknown reason the pain has increased over the past 6 weeks.  i put my pain level at 10 right now.  i can't sit for...

      RHMLucky777

      Read More

      hi stacy.  unfortunately, i don't have any suggestions.  i've been suffering with burning pain in my buttocks and the upper back part of my legs for 13 years.  it was diagnosed as demylinating neuropathy.  for some unknown reason the pain has increased over the past 6 weeks.  i put my pain level at 10 right now.  i can't sit for any extended period of time.  i've tried accupuncture with negative results.  during one treatment she placed the needles directly in the pain areas.  that evening the burning was extremely severe.  it lasted for about a week.

       

      i also have fibromyalgia.  i've been in a fibro flare-up since the burning pain increased.

       

      i don't know what to do at this stage.  i'm trying a new accupuncturist hoping he can help.

       

      i hope and pray that you will be able to find something that offer you comfort.

       

      by the way, i'm a 64 year old male.

       

      jerry

  • Anonymous
    Faith
    Oct. 08, 2007

    For several months this pain has gotten worse.  First I thought perhaps it was an ovary issue because it felt as if it was coming from that area.  Then in was the lower part of my back (which my oncologist said was my pelvic bone - slightly high WBC - still don't know why) and now it's the entire hip area.  Sitting, standing, and laying...

    RHMLucky777

    Read More

    For several months this pain has gotten worse.  First I thought perhaps it was an ovary issue because it felt as if it was coming from that area.  Then in was the lower part of my back (which my oncologist said was my pelvic bone - slightly high WBC - still don't know why) and now it's the entire hip area.  Sitting, standing, and laying down on my sides hurt.  Some days/time of day are worse than others. Take pain meds hurts (kidney area) I have not gone to the doctors as I no longer have insurance.  Could this be kidney related?

    • Anonymous
      NK
      Nov. 10, 2009

      Look up Levator Ani Syndrome on the web. See if this describes your pain. It is common and there is treatment available that works. Good luck.

  • Synergy
    Aug. 06, 2007

    Before I jump in, I first want to say that what works for one, may or may not work for another. We all have different body chemistry and responds differently to medication. We are NOT DOCTORS, and for no reason should we be aggressively suggesting schedule IV narcotics. We don't know any member's full medical history. Their allergies, sensitivities,...

    RHMLucky777

    Read More

    Before I jump in, I first want to say that what works for one, may or may not work for another. We all have different body chemistry and responds differently to medication. We are NOT DOCTORS, and for no reason should we be aggressively suggesting schedule IV narcotics. We don't know any member's full medical history. Their allergies, sensitivities, previous conditions... This is just irresponsible, especially with the advent of Internet pharmacies.

     

    Now....

    Gebrazell_

     

    I am so sorry that you are going through all of this. Pain exists on many levels... bone, nerve, muscle/ soft tissue, and they all stink! Nerve pain especially... and it travels. Imagine you have a tree trunk going from the base of your skull down to your pelvis (central nervous system); now add branches... like an oak tree (ganglion). There are lots of paths your pain can travel. Has anyone suggested you keep a pain journal? Even if you are in pain 24/7... nerve related soft tissue injury can be difficult to identify. Write down how you are feeling when you wake up, a few times during the day (especially if it spikes), and before you go to bed. Do your best to describe the pain. Whether is burning, tingling, choking, hot, tearing, stabbing.... This information will help your doctor identify what is going on.

     

    Moist heat really helps calm both muscular and nerve related pain. Hot showers, sauna, Jacuzzi, a damp microwaved towel (not too hot!)... can all help to force heat into the affected area.

     

    There are several treatment options, considered to be in the alternative arena, which you may want to consider. Things like acupuncture, sauna, massage, yoga, reiki, feldenkrais, biofeedback, meditation, chiropractic... can all produce positive results. Please talk to your treating physician before starting any alternative treatment program as it can, and does affect western medicine! You should also know that many of these treatments are not covered by insurance (although some are just now being recognized).

     

    As for medication... identifying the root source will help your doctor narrow down what is going to help. There can be a lot of trial and error, and it can be frustrating at times. We are all here if you need to vent. Personally, I had acute idiopathic polyneuritis (Gullian Barre) as a young adult. I do appreciate how painful this can be. If you would like to PM me directly... please do.

     

    Breathe! The answers will come.

     

    Please keep us posted....................

    • paindrain
      Oct. 19, 2007

      Hello Synergy!

       

      I just wanted to say that if your comments were directed at me, regarding aggressively suggesting the use of schedule IV narcotics, then you didn't read my post very carefully.  I was only suggesting that they worked for me, and I personally criticized them for being addictive.  In no way, did I encourage others to pursue taking...

      RHMLucky777

      Read More

      Hello Synergy!

       

      I just wanted to say that if your comments were directed at me, regarding aggressively suggesting the use of schedule IV narcotics, then you didn't read my post very carefully.  I was only suggesting that they worked for me, and I personally criticized them for being addictive.  In no way, did I encourage others to pursue taking them. 

       

      To be honest, I know of several people who take Schedule IV narcotics for their pain on a daily basis.  They are not drug addicts, but I am certain they are physically addicted to the meds, just by virtue of the fact of what narcotics are and do to the body.  For some, these are the only medications that provide relief. 

       

      Again, I was only stating my position on the subject.  If we have gotten so touchy about what we can and cannot say on these posts, then I think we should just shut them down.  Like you said, what works for you, may not work for me.  I was simply stating what works for me.  I added a cautionary comment that narcotics are not ideal, even if they do work, because of their addictive nature.  If you consider that to be aggressivly encouraging others to try to get schedule IV narcotics, then I would hate for you to go onto the chronic pain forum and read about people who encourage the use of morphine pumps and other heavy duty narcotics. 

       

      Take a chill pill, Synergy.  I am not here to push anything on anyone.  I am simply here sharing my personal experience.

       

      Kay

    • Anonymous
      LINDA ROMERO
      Apr. 03, 2008
      CryTO ALL WHO SUFFER WITH PAIN THIS IS FOR YOU,I HAVE BEEN SICK FOR ABOUT 16 YEARS,AND I WANT TO KNOW WHAT THE HELL IS WRONG WITH TAKING LORTABS AS LONG AS YOU CAN TAKE IT LIKE YOU SHOULD.I CANT TAKE NSADS,I AM ALLERGIC.SOMETIMES IF I RUN OUT OF MY MEDS A COUPLE DAYS BEFORE MY REFILL{CAUSE I ONLY GET 2 A DAY}.I AM NOT FREAKING OUT,MATTER OF FACT I LIKE IT THAT...
      RHMLucky777
      Read More
      CryTO ALL WHO SUFFER WITH PAIN THIS IS FOR YOU,I HAVE BEEN SICK FOR ABOUT 16 YEARS,AND I WANT TO KNOW WHAT THE HELL IS WRONG WITH TAKING LORTABS AS LONG AS YOU CAN TAKE IT LIKE YOU SHOULD.I CANT TAKE NSADS,I AM ALLERGIC.SOMETIMES IF I RUN OUT OF MY MEDS A COUPLE DAYS BEFORE MY REFILL{CAUSE I ONLY GET 2 A DAY}.I AM NOT FREAKING OUT,MATTER OF FACT I LIKE IT THAT WAY CAUSE I KNOW I AM NOT ADDICTED.ALSO PRAYING HELPS ME ALOT.LET ME ALSO SAY IF A PERSON DOES NOT SLEEP AT NITE THEN THE PAIN IS A 1000 TIMES WORSE.BELIEVE ME I KNOW.SO BE SURE TO HAVE A GOOD NITES SLEEP AND THINGS WILL BE BETTER IN THE AM...
    • Synergy
      Apr. 05, 2008

      Linda_

       

      I never said there was anything wrong with taking pain meds.. I said it was a difficult process and there is a lot of trial and error. I also said there are other things you can try. I am in year 17, and do understand. I am sorry for your suffering...

  • annebeckett
    Aug. 06, 2007

    First off, just because the xrays don't show a definitive reason or cause for the pain, it does NOT mean that the pain is not there.  Most doctors know this.  Soft-tissue injuries and pain do not show up on xray or, really, any other scans.   I HOPE your doc(s) are not relying on xrays, alone, to diagnose you, either.  Ask them...

    RHMLucky777

    Read More

    First off, just because the xrays don't show a definitive reason or cause for the pain, it does NOT mean that the pain is not there.  Most doctors know this.  Soft-tissue injuries and pain do not show up on xray or, really, any other scans.   I HOPE your doc(s) are not relying on xrays, alone, to diagnose you, either.  Ask them for an mri or ct scan.  These tests do have a better ability to show just what is up;  they can, too, really show pretty-much nothing. 

    If the Mobic (Mobigesic, any NSAID) works for you, even most of the time, stick with it.  Not everyone needs the heavier narcotics to handle it.  In fact, when it comes to soft-tissue pain, anti-inflamatories are generally better at pain control than any narcotics.

    I'll write more later.  Gotta go right now.

     

  • paindrain
    Aug. 05, 2007

    Dear gebrazell:

     

    I don't have the same kind of pain you do, but I feel for you, as a sister who does experience chronic pain in my neck, back and head.  I had never heard of mobic before, but I looked it up on the internet and it said it was an NSAID.  I, personally, have gotten little to no relief from NSAID's.  It is like taking...

    RHMLucky777

    Read More

    Dear gebrazell:

     

    I don't have the same kind of pain you do, but I feel for you, as a sister who does experience chronic pain in my neck, back and head.  I had never heard of mobic before, but I looked it up on the internet and it said it was an NSAID.  I, personally, have gotten little to no relief from NSAID's.  It is like taking a placebo for the pain.  Honestly, the only thing that really works for my neck and back pain are the narcotics like Oxycontin and Hydrocodone.  Since I am a recovering alcohol and drug addict, doctors won't prescribe them to me.  So, I have learned to live with a life of pain, very similar to what you are doing.  It really sucks, and it is not fair.  You would think with all the advances in medical treatments, they would have come up with something better for chronic pain, that does not also cause you to become addicted to it.

     

    I want to wish you the very best in your search for an answer to your pain.  If I hear of anything new and different, I will send you a post.  In the meantime, please know that you are not alone in your pain.  When you lie awake at night from the pain, there are probably many more of us doing that very same thing.  The nights can be so long . . . .

     

    Still, I continue to be hopeful.  Something may come along that works for all kinds of  pain.  Have you ever thought about alternative kinds of relief from the pain?  Like acupuncture, meditation, yoga, hypnosis and warm and cold packs?  I have used acupuncture with quite a bit of success for migraine pain.  Part of my problem with back pain is my posture.  I am a slumper and this just exacerbates the pain.

     

    Wishing you well in your journey to find some relief - six years is an awful long time to be in so much pain.

     

    Kay

    • gebrazell
      Oct. 19, 2007

      Hi Kay, thank you for your response. No, I have not yet tried accupuncture, but several friends of mine have suggested it.

       

      I likewise wish you well on your journey to relief. I tried to plan well for my older years, but I always thought more about family and finances...then this.

       

      Blessing to you!

    • Anonymous
      Beverly
      Mar. 27, 2010

      Hi everybody.  I just googled burning butt and I found this website.  what a shock that there are so many of us with this problem and no relief in sight.  I have the burning on both sides of my buttocks just above the top of erach leg and the pain in my left hip.  Sleeping is a real challenge.  I put a 1-1/2" mattress pad on my bed...

      RHMLucky777

      Read More

      Hi everybody.  I just googled burning butt and I found this website.  what a shock that there are so many of us with this problem and no relief in sight.  I have the burning on both sides of my buttocks just above the top of erach leg and the pain in my left hip.  Sleeping is a real challenge.  I put a 1-1/2" mattress pad on my bed and that seems to help a little.  I will be back to check this site again.  I was just about to go to the doctor, but it seems that most of you have done that with no help. Wish I had some help for us all.  Thank you for all your comments.  Beverly

    • sheila
      Jul. 16, 2010

      Hi Beverly! I also suffer from this terrible condition..though i think mine is a little worse (I thnk) I have vulvodynia (so ive been told) It started with intense vaginal burning then got on lyrica (am now taking 450mg) to my butt cheeks. I CAN NOT sit for more than 15 minutes without my butt cheeks feeling like they are on FIRE. Sometimes lately after bowel...

      RHMLucky777

      Read More

      Hi Beverly! I also suffer from this terrible condition..though i think mine is a little worse (I thnk) I have vulvodynia (so ive been told) It started with intense vaginal burning then got on lyrica (am now taking 450mg) to my butt cheeks. I CAN NOT sit for more than 15 minutes without my butt cheeks feeling like they are on FIRE. Sometimes lately after bowel movements can be painful. My relaxing time at home now is on my belly on the floor :(. Im told I have pedendal nerve pain. Its been over a year and no improvement. I am going to see a chiropractor in 2 weeks to see if there is a possibility of help there.  Sheila

    • kim
      kim
      May. 31, 2012

      accupuncture does not work because my mom tried it and it did not help the pain it made it worst

      

    • Anonymous
      dmjames
      May. 30, 2008

      I left a post recently that gave the website that explains there is a surgery for Piriformis syndrome, It is :

       

      http://www.eorthopod.com/public/patient_education/6623/piriformis_syndrome.html

       

      It talks about the old way of clipping the muscle, but my dr. just removes it, it is not a necessary muscle and I talked with a woman here in Mich. who had ...

      RHMLucky777

      Read More

      I left a post recently that gave the website that explains there is a surgery for Piriformis syndrome, It is :

       

      http://www.eorthopod.com/public/patient_education/6623/piriformis_syndrome.html

       

      It talks about the old way of clipping the muscle, but my dr. just removes it, it is not a necessary muscle and I talked with a woman here in Mich. who had  it done in Feb. and she is 100% better. I have also read some posts on this site about others who had Dr. Bohlman in Cleveland and had success.

       

      http://www.runningforums.com/Piriformis_release_surgery__anyone____t19559.html

       

      Best of Luck to you!

      Denise

    • jsupko
      Jan. 17, 2011

      I was a patient of Dr Henry Bohlman's on January 11th, 2010. After an unsuccessful gluteal vein embolization and an L4-L5 discectomy by other doctors, Dr Bolhman removed my piriformis muscle on the right side. When doctor Bohlman pushed his thumb into my right buttock I thought I would go into orbit the pain was so intense. The surgery helped the severe pain,...

      RHMLucky777

      Read More

      I was a patient of Dr Henry Bohlman's on January 11th, 2010. After an unsuccessful gluteal vein embolization and an L4-L5 discectomy by other doctors, Dr Bolhman removed my piriformis muscle on the right side. When doctor Bohlman pushed his thumb into my right buttock I thought I would go into orbit the pain was so intense. The surgery helped the severe pain, but I still have the burning pain on both sides when sitting. A year later the burning pain is increasing when sitting. I can usually sit or drive for an hour. Sleeping is also difficult.

       

      Unfortunaley Dr. Bohlman passed away very unexpectedly this past summer. I have had followup work with Dr Christopher Fury who is one of Dr. Bohlman's disciples.

    • Anonymous
      Sue Wickliffe
      Dec. 15, 2008

      I experienced chronic neck, shoulder and hip pain for over a year. I went through physical therapy with very little relief. Everything I tried only gave me temporary relief until I tried accupuncture. After 8-10 visits I was pain free. I highly recommend this therapy.

       

      Sue

    • gebrazell
      Dec. 16, 2008

      Hi Sue,

       

      Thanks for your post and suggestion of accupuncture. I saw an accupuncturist about my butt pain, but he was reluctant to treat me as I had just started a new pain medication. The accupuncturist was highly recommended by three friends and a former work associate. The new pain medication did not work to improve my pain medication.

       

      Within...

      RHMLucky777

      Read More

      Hi Sue,

       

      Thanks for your post and suggestion of accupuncture. I saw an accupuncturist about my butt pain, but he was reluctant to treat me as I had just started a new pain medication. The accupuncturist was highly recommended by three friends and a former work associate. The new pain medication did not work to improve my pain medication.

       

      Within the last 8 weeks have have been much better. I attribute this to several things. 1) I saw an orthopaedic pain management doctor who re-diagnosed my pain as bursitis of the ischiel tuberosity (bottom of the pelvis). I've had two rounds of injections in both hips. The first gave only a few days relief. The second injections which were done a couple of months later seem to have really helped.

      2) I've learned that there are some things that I just simply can no longer do--sit for long periods, take long trips, etc.

      3) I'm still taking mega doses of Vitamin D. I'm not sure if this contributes to my

      improvement, but I was tested and was deficient--as are many Americans.

      4) And lastly, but just as important as the others, I prayed about my condition, a lot. And I had others who prayed on my behalf. Some may not give much credit to prayer, but just having the support of the others who cared--like on this post--is a blessing.

       

      Gerald

       

    • razorhinney
      Feb. 25, 2011

      dear god I thought it was just me. mine started a little over 2 years ago from my job mainly. I sit 8 hours a day in the same position at a computer in a standard issue chair, and my right butt cheek, sometimes even ly left, burns and stings so bad it feels like I am on raw nerves or razor blades. so far the 'experts" think its sciatica, but the pain also has...

      RHMLucky777

      Read More

      dear god I thought it was just me. mine started a little over 2 years ago from my job mainly. I sit 8 hours a day in the same position at a computer in a standard issue chair, and my right butt cheek, sometimes even ly left, burns and stings so bad it feels like I am on raw nerves or razor blades. so far the 'experts" think its sciatica, but the pain also has been in my lower back..mri shows nothing...k...when i stand up i do feel relief..but I have to sit to do many things in life and its kiling me, my blood pressure is up over the stress of the pain and the job, and still, no help. msaids do not do a thing except tear my tummy up..waht in the world? they can fix so many things, cant they at least give me an answer?

    • Virginia
      Feb. 26, 2011

      Dear Razorhinny:  I know exactly how it feels as I have had burning buttocks and hamstrings for 7 years now.  I will say, though, that I am improved over when I was first afflicted. What started it was heavy duty butt exercises in the gym.  Then a few months later I had a cortisone shot in my right piriformis muscle and all hell broke loose....

      RHMLucky777

      Read More

      Dear Razorhinny:  I know exactly how it feels as I have had burning buttocks and hamstrings for 7 years now.  I will say, though, that I am improved over when I was first afflicted. What started it was heavy duty butt exercises in the gym.  Then a few months later I had a cortisone shot in my right piriformis muscle and all hell broke loose.  I was in so much pain I could do nothing but lie in bed.  My MRI's also showed nothing.  I should add that I have fibromyalgia.  Here are some things that have helped me.

      1.  First, find a neurologist (you have nerve pain, that is why it does not respond to anti-inflammatories like Ibuprofen) that is smart and cares.  There are medicines for nerve pain, like Lyrica, etc.

      2.  You need to relax as best as possible because anxiety will increase your pain perception and limit your healing.  I was finally given the right meds for me, doxepin (an old line antidepressant which is excellent for nerve pain and insomnia) and clonipin (benzodiazapine).  Once I started sleeping well, I got some control over the pain.  Sleep is very healing.  Rest when you need to.

      3. After a while my butt feels like i'm sitting on a hot stove.  I bought a pad called a "chillow."  It stays cool for a while.  I also wrap an ice pack in a small towel and place it near the tailbone.  This helps me sit longer.  It is a lifesaver for me.  Maybe it will help you too.  Chillow can be purchased on amazon. 

      4. Reduce the stress in your life as much as possible. Let people know you need their help and cooperation.  Meditate or pray.  Take care of your spirit in whatever way works for you.  This really does help.

      5.  Have your vitamin D3 level checked.  Mine was off the map low.  Once I started taking 4,000 milligrams a day, I woke up with less pain.  Also, fish oil can help.  Check out vitamin D3 and pain on the internet.  You will find articles that tell of the wonders of this vitamin in controlling pain.

      6.  Have hope.  I had none when I first was afflicted with this.  It seemed no doctor could help me.  I did everything under the sun - chiro, acupuncture, on and on.  I finally started improving years after the injury.  You may improve much sooner if you are put on the right medication.  I hope all this helps you.

      Virginia

    • jean
      Jul. 11, 2011

      I've suffered from burning sensation in my buttocks for several years.  I've seen several doctors and no one can give an answer.  Just pinch nerve, they said. But I found something that really helps me and I can sit for hours now. Try sitting on a ice cold pack.  Arrange it so that it will cover your buttocks and legs. It's been a blessing. ...

      RHMLucky777

      Read More

      I've suffered from burning sensation in my buttocks for several years.  I've seen several doctors and no one can give an answer.  Just pinch nerve, they said. But I found something that really helps me and I can sit for hours now. Try sitting on a ice cold pack.  Arrange it so that it will cover your buttocks and legs. It's been a blessing.  I hope this will help all of you who has this problem

       

    • AlkalineMike
      Aug. 05, 2013

      i also have a history of alcohol and drugs. However ive been sober 20 plus years and i take morphine, oxycodone etc  all of them. My doctor trusts me completley as i donbt abuse i just use to manage the pain

       

      heres a way to safeguard your .Never take enough to hit your pleasure zone. Only take enough where you still have minor pain. Ive been doing...

      RHMLucky777

      Read More

      i also have a history of alcohol and drugs. However ive been sober 20 plus years and i take morphine, oxycodone etc  all of them. My doctor trusts me completley as i donbt abuse i just use to manage the pain

       

      heres a way to safeguard your .Never take enough to hit your pleasure zone. Only take enough where you still have minor pain. Ive been doing this for years now after having three back surgeries and a total replacement last month. I used to have loads of know it alls. At my AA meetings some would talk like they were scholars with PHD's in medicine. Thats because they are too  scared ( mentally) to handle a little bit. If your doctor prescibes it your ok. Of course you should make sure you dont have a happy pill writing doctor who abuses his practice.