Living with Thoracic Outlet Syndrome and Cervical Radiculopathy

raeben Community Member January 12, 2009
  • I just came across this site.  Unlike many of you who have been living for years with chronic pain it has been 1 1/2 years for me.  It started with pain in my forearm just below the elbow on the lateral side.  Working in healthcare and being a nursing student I assumed it to be Tennis Elbow (Lateral Epicondylitis).  I saw my family Dr. who agreed that it did in fact sound like tennis elbow, he gave me a tennis elbow band and some pain medicine and on my way I went.  With each passing week it felt like the pain was getting worse and spreading down my arm into my hands and fingers affecting my muscle control and dexterity and then eventually up my arm into my shoulder.  I was sent for a battery of tests - a Cervical & Thoracic MRI, Which showed some mild changes in C4, C5 & C6, from there I was referred to Physical Therapy for what they thought then was Cervical Radiculopathy.  The PT that I saw on the 1st visit after taking my history and examining me said that it sounded more like Thoracic Outlet Syndrome to him.  With that information I went back to my family doctor, she sent me for an EMG/NCS which showed nerve impingement at C8, from there I was sent for a Doppler Ultrasound which came back confirming Neurogenic TOS.  With that my family Dr. sent me to a Vascualr Surgeon who specializes in TOS, he confirmed the diagnosis and I was then referred to a pain management Dr and it has been the 2 of them that have been treating my problem.  I have to date had a Brachial Plexus Block, 2 Stellate Ganglion Blocks and 1 Cervical Epidural Injection.  It recently has been thought that I suffer from Cervical Radiculopathy and TOS.  I am on chronic pain meds, Oxycodone 10 mg every 6 hrs., Flexeril which is a muscle relaxer, they tried me on a round of Neurontin 100's and 300's but this only exacerbated my Anxiety and Panic Disorder so they have since stopped that medication.  There are other medications like Neurontin with lower side effects but of course my insurance company will not pay for them due to there expense.  For me it just seems like even with all the treatments my problem is just getting worse and spreading for now I have pain in my shoulder, the right side of my neck and scapular region on my back.  I also have tenderness which can be palpated right under my collar bone and if my 2 yr old climbs on me when I'm stretching out my upper back on the floor tha pain in my scapular region on my back come right through to the front in my rib cage like someone stabbed me with a dull knife.  I was forced to drop out of school and I am unable to work since I am right hand dominate and what job is there that doesn't involve your hands.  The thing that is really weird is that smaller things like typing or writing cause me more pain than picking up my 2 y/o who is 30 #.  This has taken it's toll on every aspect of my life.  As stated above I also suffer from Major Depressive Disorder, Generalized Anxiety Disorder and Panic Disorder.  I had those long before the pain all started.  However, I know that living with chronic pain came make these mental conditions worse and vice-versa depression can make pain worse.  In other words your completely stuck in a realm all on your own outcasted by everyday people some who believe you have these medical problems but are making them out to be worse then they really are and others who don't believe you at all that you are faking to stay out of work and get out of doing things and for sympathy.  Family that is supposed to love, care and support you turns their back on you and your left to fend for yourself which just starts the spiral of depression, pain, depression, pain all over again.  There have been days that I just wanted to walk into the hospital and say just cut it off, I can't live with the pain and uselessness of this arm anymore. I've had rounds of prednisone with little or no relief.  The injections help a little but only for a short while.  And the pain meds since I've been on them for so long just don't seem as well anymore. I think I need to discuss a dosage adjustment with my Dr. at my next visit.  Just like most of you I have my better days and my completely debilitating days.  And if I start off fairly good in the morning by night fall I am in agony unable to sleep.  I have also had 3 isolated seizures and suffer from IBS and reflux so I have to be extremely careful about medications prescribed.  If anyone out ther is in the same boat and has any ideas please let me know. I'm only 35 with 3 children and can't even fathom going through the rest of my life like this.

26 Comments
  • shelly rox
    Dec. 09, 2013

    wow, i thought i was reading my life story when i read your comments... i am at the stage where I will have to withdraw from school if ADA cannot find a way to accommodate me. school is really expensive these days and i will have pay darn loan back asap if dont finish half time student credits. homework isa full time jon.

    i had 8 facet injections in neck area....

    RHMLucky777

    Read More

    wow, i thought i was reading my life story when i read your comments... i am at the stage where I will have to withdraw from school if ADA cannot find a way to accommodate me. school is really expensive these days and i will have pay darn loan back asap if dont finish half time student credits. homework isa full time jon.

    i had 8 facet injections in neck area. didnt notice improvements like people who get cortizone shots and instantly get up and walk withoit pain. i got hurt at work. workers comp pays 104 months. now no invome and cannot get released from doc to go work because i am so limited as to what i can do.  i nver expwrienced depression before until 6 months ago. unbelievable agony; wasnt sure imy family was going to keep me around and i didnt think i would have wnergy to breathe one more breath aa water released from eyes like fast leaking faucet. no emotion. i lay in bed freezing as i cant get up to feed the fireplace. 48 degrres in house, making it unbearable. where do people like us go from hete or we just part of the forgotton 

  • shelly rox
    Dec. 09, 2013

    wow, i thought i was reading my life story when i read your comments... i am at the stage where I will have to withdraw from school if ADA cannot find a way to accommodate me. school is really expensive these days and i will have pay darn loan back asap if dont finish half time student credits. homework isa full time jon.

    i had 8 facet injections in neck area....

    RHMLucky777

    Read More

    wow, i thought i was reading my life story when i read your comments... i am at the stage where I will have to withdraw from school if ADA cannot find a way to accommodate me. school is really expensive these days and i will have pay darn loan back asap if dont finish half time student credits. homework isa full time jon.

    i had 8 facet injections in neck area. didnt notice improvements like people who get cortizone shots and instantly get up and walk withoit pain. i got hurt at work. workers comp pays 104 months. now no invome and cannot get released from doc to go work because i am so limited as to what i can do.  i nver expwrienced depression before until 6 months ago. unbelievable agony; wasnt sure imy family was going to keep me around and i didnt think i would have wnergy to breathe one more breath aa water released from eyes like fast leaking faucet. no emotion. i lay in bed freezing as i cant get up to feed the fireplace. 48 degrres in house, making it unbearable. where do people like us go from hete or we just part of the forgotton 

  • Anonymous
    jean
    Jul. 08, 2012

    I have TOS for over a year now, it very painful I woke up one morning my little finger was numb I thought I had layed on it while I was sleeping and it was hurting so bad then my ring finger my hand went numb I was in so much pain, Then my left shoulder, neck collorbone was hurting,  did all the test I was told TOS never heared of it before, it a pain...

    RHMLucky777

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    I have TOS for over a year now, it very painful I woke up one morning my little finger was numb I thought I had layed on it while I was sleeping and it was hurting so bad then my ring finger my hand went numb I was in so much pain, Then my left shoulder, neck collorbone was hurting,  did all the test I was told TOS never heared of it before, it a pain no one understands untill they have TOS, family friends look at you as if to say you dont look sick they dont understand and thats what hurt because this is a pain that will wreack your life it like a pain deep inside to the bone it don't  ever go away it there hanging on to you ...you cant do the things you use to and the worse part is you would love for someone to just sit and listen to you tell your story or thats the way i have felt, pain meds dont always help and the sugery 9 times  10 does not help or thats what I have been told and the sugery is a bad one that is why doctors dont just jump and do it right off , someday arent to bad but theres always pain but the days that is a bad day the pain is bad. well thats how I am       

  • shadowdancer
    Jan. 05, 2012

    I would really like to talk with you. I've been dealing with TOS for over six years and have also wanted to walk into the ER and ask them to cut off my right arm.

     

    Moderator's note: For your security and privacy, please do not post personal contact information such as email addresses and phone nubmers.

  • Shan
    Aug. 12, 2011

    I'm stunned! I feel as if I've just read my life story for the last 15 years!! Almost everything (literally 95%) of what you've written here is how I've felt for 15 years. I was just recently diagnosed with Depression also. Thank you!! I've told several Dr's that I believe I have TOS and all of them tell me that's incorrect. So tired and frustrated....

    RHMLucky777

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    I'm stunned! I feel as if I've just read my life story for the last 15 years!! Almost everything (literally 95%) of what you've written here is how I've felt for 15 years. I was just recently diagnosed with Depression also. Thank you!! I've told several Dr's that I believe I have TOS and all of them tell me that's incorrect. So tired and frustrated. My roght hand is the most painful part (fine motor skill usage) esp with writing...

     

  • Anonymous
    Susie
    Oct. 05, 2010

    Cool

     

    I have a little bit of everything.. Fibro, Chronic Pain in Neck, Thoracic, Lumbar and lower lumbar.. I have severe migraines, which mostly last up to 3 days of Hell. I take meds to prevent them and to make them stop within 20 minutes, if doesn't work that way for me.. If I"m lucky I will get 4 hours a night of deep sleep, that doesn;t happen very much.....

    RHMLucky777

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    Cool

     

    I have a little bit of everything.. Fibro, Chronic Pain in Neck, Thoracic, Lumbar and lower lumbar.. I have severe migraines, which mostly last up to 3 days of Hell. I take meds to prevent them and to make them stop within 20 minutes, if doesn't work that way for me.. If I"m lucky I will get 4 hours a night of deep sleep, that doesn;t happen very much..

    I also have Body Tremors, Osteoartrhitis (everywhere), Cartliage Diasease (not good at spelling).. RA, and so much more...

    But, we all have to Find a way to Deal with this and still be there for our kids..

     

    Thanks for reading this!  Miss-Q

  • jmo
    jmo
    Jun. 02, 2010

    Wow, R.  Your post sounds so exactly like what is happening to me.  The only differences being that I am 41, have 2 kids, and have had this pain for 1 year.  I was finally diagnosed yesterday with TOS.  Mine is left side; that is my dominate side.  I feel for you.  It is soooooooooo difficult to make family & friends understand...

    RHMLucky777

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    Wow, R.  Your post sounds so exactly like what is happening to me.  The only differences being that I am 41, have 2 kids, and have had this pain for 1 year.  I was finally diagnosed yesterday with TOS.  Mine is left side; that is my dominate side.  I feel for you.  It is soooooooooo difficult to make family & friends understand that your medical conditions are not only real, but that you are not able to function like your regular self before any of these conditions emerged.  I agree; my left hand is so clumsy and useless.  Like I need this on top of the depression & anxiety which I've had for appx 10 years now.  I feel like my family thinks I am making things up for sympathy and my husband thinks I am "lazy".  I've explained listen, I was nothing like this; I was energetic and full of life prior to suffering from anxiety and depression and now this stupid TOS is really making everything worse.   I too have been on oxy for appx 1 yr and not really working well anymore.  I tried Neurontin as well; it makes me very tired, as does the muscle rexalant Soma.  I am to try another round of chiro & p/t now that dx of thoracic outlet syndrome has been made.  I think only somehow who has experienced chronic pain, depression and anxiety can understand the difficulties of doing not only everyday things, but working!  I don't know if I can offer any advice except try to tell yourself how lucky you are in other ways.  For me (and maybe for you!) I tell myself how lucky I am to be blessed with 2 gorgeous, healthy kids who love me despite my medical flaws.  My oldest son-age 9-tries to make me feel better by gently massaging my neck/arm and reading me books.  Those sessions are the best medicine.  My heart goes out to you.  J.

  • Anonymous
    Anonymous
    Feb. 02, 2010

    I was diagnosed with thoracic outlet syndrome following a variety of tests as you describe.  The symptoms again were debilitating and the heavy dull ache I experienced in my arm, neck, shoulders and inti my fingers used to have me in tears.  I was referred to the National Orthopaedic Hospital in Stanmore and had a decompression.  i was told symptoms...

    RHMLucky777

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    I was diagnosed with thoracic outlet syndrome following a variety of tests as you describe.  The symptoms again were debilitating and the heavy dull ache I experienced in my arm, neck, shoulders and inti my fingers used to have me in tears.  I was referred to the National Orthopaedic Hospital in Stanmore and had a decompression.  i was told symptoms may not go but thankfully 14 years on I do occasioally have an ache but in comparrison to what I did experience this is probably not even 5 percent of the pain.  

  • Anonymous
    Anonymous
    Mar. 22, 2009

    My story is almost exactly like yours.  I finally got the dx that I have both the venous and neurogenic TOS...I'm scheduled for surgery a week from tomorrow at Barnes Hospital.  I've researched and am glad to have one of the top vascular surgeons in the U.S.  Look into surgery....

    Andi

    • raeben
      Mar. 23, 2009

      This may be something I will consider in the future.  I had a bit of a scare yesterday as after a day of easy work, I work as a demonstrator handing out flyers and coupons, after a 6 hr. day filled with many breaks I drove home with pain not just the normal pain on the right side but with pain on the left side around the collar bone wrapping around to...

      RHMLucky777

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      This may be something I will consider in the future.  I had a bit of a scare yesterday as after a day of easy work, I work as a demonstrator handing out flyers and coupons, after a 6 hr. day filled with many breaks I drove home with pain not just the normal pain on the right side but with pain on the left side around the collar bone wrapping around to the back under the armpit, a sharp stabbing pain and a dull ache in my shoulder, much the same as my symptoms on the right.  I am now scared to death that I have now developed TOS on the left side as well, posssibly from over use.  I will be contacting my Dr. this week to find out.  I wish you the best with your surgery!  Please let all of us suffering with TOS know of your outcome!  Thanks for replying!  Best Regards!

    • Anonymous
      Andi
      Mar. 23, 2009

      To give you a little history...I've been a nurse for 18 years.  I'm 40 with 2 teenage boys.  I started having pain in my rt forearm two years ago (right handed too) followed with puffy rt hand, shoulder stiffness and eventually swollen rt forearm.  The edema (swelling) in my rt forearm never went away no matter what I tried....I went to numerous...

      RHMLucky777

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      To give you a little history...I've been a nurse for 18 years.  I'm 40 with 2 teenage boys.  I started having pain in my rt forearm two years ago (right handed too) followed with puffy rt hand, shoulder stiffness and eventually swollen rt forearm.  The edema (swelling) in my rt forearm never went away no matter what I tried....I went to numerous docs....primary, ortho, sports med, etc..  was dx with tennis elbow, golfers elbow, maybe carpal tunnel...wrong diagnosis all along.  When my rt hand started going numb in January I got scared.  I have a high pain tolerance, but the numbness was too scary to avoid.  So I went to a neuro doc who sent me for a MRI and found 3 small herniated discs in my neck...not worth operating on though.  He was the one that finally said you may have TOS??   As a nurse I'd only heard of this in passing once....!  The neuro doc sent me to my vascular surgeon who confirmed it with some tests.  My rt subclavian vein gets 100% pinched off by my first rib and collarbone while I raise my arm up...that is why I have swelling in my forearm.  The blood is pooling (not good circulation).  HUGE RISK FOR A BLOOD CLOT! I also have the neurogenic form so he has to take my scalene muscles.  I am now giving myself Lovenox shots in my stomach twice a day..this is a blood thinner.  I am so fortunate that I did not develop a blood clot!  The neurogenic part is frustrating because of the occasional numbness, nerve pain etc...  The only meds I choose to be on after are my blood thinner, muscle relaxer, and Tylenol ES.  The nerve meds they tried early on such as amitriptyline, neurontin, etc..AND arthritis meds NEVER really worked....so I decided I'm not taking it if it doesn't work!!!  Hopefully, my surgery will go ok.  I'm told it will last 6-10 hours depending...long recovery and the first two weeks are very painful.  Lots of physical therapy afterwards also...but, I'm a strong willed gal so I will manage! 

       

      IN the meantime I lost my job as a home health nurse last month!  During all my doctors visits, etc...after my PTO time ran out they got rid of me!  Wasn't that a nice caring hospital!  They found out I had some medical conditions so I guess they thought it'd be good to get rid of me...Do I dare say which one it was..probably not.  Oh well, forgive but not forget..

       

      Hope you will get yourself checked out by someone who really knows TOS.  Don't settle...these docs are not all specialist in this rare disorder.  Take care!

      Andi

    • Anonymous
      Anonymous
      Jan. 17, 2010

      This seems like a fairly old post, but I had to respond.  I've been going through TOS since 05, and I totally understand your frustration.  There is another really good site called ATOSA (Americian thoracic outlet syndrome association-I think that's what it stands for) and there's a lot of people and info about this condition.  I hope it will...

      RHMLucky777

      Read More

      This seems like a fairly old post, but I had to respond.  I've been going through TOS since 05, and I totally understand your frustration.  There is another really good site called ATOSA (Americian thoracic outlet syndrome association-I think that's what it stands for) and there's a lot of people and info about this condition.  I hope it will help you if not to at least help you to know you're not alone & YOU ARE NOT CRAZY.

  • Anonymous
    Jen
    Feb. 23, 2009

    Hello, my name is Jen and I also have Thoracic Outlet Syndrome. I am a vascular technologist, who performs ultrasounds and found out I has this because I perform the testing to diagnose it. I am 25 and a single mother with a 2 and 5 yr old. I realized when I was younger, I could not do overhead activities, and would avoid other upper extremity activities. I...

    RHMLucky777

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    Hello, my name is Jen and I also have Thoracic Outlet Syndrome. I am a vascular technologist, who performs ultrasounds and found out I has this because I perform the testing to diagnose it. I am 25 and a single mother with a 2 and 5 yr old. I realized when I was younger, I could not do overhead activities, and would avoid other upper extremity activities. I used to have long hair and could not dry it or curl it. I've been performing ultrasounds for 3 1/2 years and had great difficulty doing so. My most prominant symptom is weakness, numbness, and cold sensitivity in both arms, my left worsr than right. I do have a nagging pain in my axillary region. I know a lot about TOS because I studied it, work with it, and work with vascular surgeons who treat it. I actually have bilateral cervical ribs. The other cause can be from your scalene muscle. Most doctors are conservative with treatment and recommend physical therapy first. There are surgical options. If you were to have cervical ribs, they can remove them. This can be diagnosed on an xray of your c-spine. The only thing they cant tell from the xray is is there is fibrous bands around the ribs making the narrowing of the thoracic outlet worse. They can also operate on the muscle which is not as serious of a surgery. I live in PA, and was recommended to go to Philly to a vascular surgeon at Thomas Jefferson. I went, but hadnt had the time with my kids to go to the recommended physical therapy. He actually recommended me go to PT to someone who specializes in TOS. I had a consultation at a local PT and I didn't feel they had the skills to really improve my condition. I recently quit my job partly to my difficulty of doing my job and because I wanted to move closer to my family, but probably have to get another job doing the same thing because I need to work. I have 2 kids to support. I'm considering the surgery because I have no strength in my arms, I drop stuff, can't grip the steering wheel. I have neurophathy in bilateral ulnar nerves, which is usually the nerve involved. Well I hope I may have helped in some way with my story!

    • raeben
      Feb. 23, 2009

      I was reading your post and believe I was sent to the same vascular Dr.  Was the Dr. you went to at Thomas Jefferson Dr. Dimuzio?  Just curious because I went to him as well I was told he was "THE" specialist in TOS and he too recommended a certain PT that was a firend of his and was a little far out of the way and most likely wouldn't take my insurance...

      RHMLucky777

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      I was reading your post and believe I was sent to the same vascular Dr.  Was the Dr. you went to at Thomas Jefferson Dr. Dimuzio?  Just curious because I went to him as well I was told he was "THE" specialist in TOS and he too recommended a certain PT that was a firend of his and was a little far out of the way and most likely wouldn't take my insurance but that seeing him and fronting the $150-$200 for the first visit would greatly benefit me.  I of course did not go because I quite simply cannot afford it.  I did go to another PT but this was prior to my TOS diagnosis.  This PT was actually the one who diagnosed my TOS.  I was originally sent there for Cervical Radiculopathy, which they have now concluded that I have as well.  I wish you all the best and I'd be more than happy to share more of my story with you.  It may end up being benefical to both us to swap info. 

    • Anonymous
      Jen
      Feb. 23, 2009
      That was the MD I went too! How strange is that! The vascular surgeon I worked with actually personally recommended the MD from Jeff and said he had worked with him at some ponit in his career, and I trust the MD I worked with. The PT was in Brumall(if that's how you spell it). Did you ever find out if your problem was a cervical rib or scalene muscle? Muscular...
      RHMLucky777
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      That was the MD I went too! How strange is that! The vascular surgeon I worked with actually personally recommended the MD from Jeff and said he had worked with him at some ponit in his career, and I trust the MD I worked with. The PT was in Brumall(if that's how you spell it). Did you ever find out if your problem was a cervical rib or scalene muscle? Muscular problems are a lot easier to treat with PT then a cervical rib. I'll be honest, I had to show Dr. Dimuzio where my cervical ribs were on the films and I can't even read xrays. I'm sure he know what he's doing in the OR though. A lot of medical professionals don't even consider TOS as a condition. They feel its very subjective. If only they knew. Are you considering surgery? Are you able to work?
    • raeben
      Mar. 20, 2009

      I do not know what the exact cause of my TOS is and neither do ther Dr's.  I really feel that they don't really care what the cause is they are just interested in treating it.  I am on chronic pain meds Oxycontin and Ocycodone IR.  I also receive injections about every 4 to 6 weeks usually an alternating pattern of Stellate Ganglion Blocks and...

      RHMLucky777

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      I do not know what the exact cause of my TOS is and neither do ther Dr's.  I really feel that they don't really care what the cause is they are just interested in treating it.  I am on chronic pain meds Oxycontin and Ocycodone IR.  I also receive injections about every 4 to 6 weeks usually an alternating pattern of Stellate Ganglion Blocks and Cervical Epidurals whiich do seem to help some but only for a short while usually I feel the pain start to increase around the 3 week mark.  Right now I have been suffering becuase I am 8 weeks post last injection and one of my pain meds is one that was involoved in the pharmaceutical recall and is on back order at just about every pharmacy.  My Dr. did switch me to Percocet 5/325 to hopefully hold me over until my regular med is back in stock however the Percocets don't seem to help as much.  One reason is they are not the IR so it takes longer to get into my system and secondly she only wants me to take one 5/325 due to the acetaminophen, with the IR's I was taking 2 5 mg capsules every six as needed along with a regular strentgh tylenol when I needed it.  She does not want me consuming large quantities of acetaminophen due to the potential liver and kidney damage which is why she put me on the Oxy IR's.  In addition to the narcoctics I am also taking 2 antitryclics, Remeron 45mg (which is for my depression but also helps with nerve pain) and Amitriptylene, and Flexeril as a muscle relaxer.  These are my daily regimen for my TOS which is in addition to the other meds I take for other medical problems.  They have not started me back with PT again becuase my insurance will not cover both the injections and the PT it's one or the other and I find the injections more benefiicial at this time.  However I do some of the exercises and stretches I was taught last June when I was in PT at home.  Dr. Dimuzio when I saw him had said that my TOS was not an advanced case and would most likely resolve on it's own with conservative treatment.  He did not find me to be a surgical candidate at the time.  Now if I see him a year later will it be different? Maybe.  Right now all I can do is try to make myself as comfortable as possible to get through daily life.  Hope all is well with you!  Best regards!

    • Leesh
      Aug. 30, 2013

      Jen go see doctor donahue in boston at mass general...he did my rib resection...was amazing..my major pain now is the nerve pain that was compressed. do you take meds? gabapentin? i heard helps alot for nerve pain...how did you do it while pregnant??????? i am 7months along and dieing.......

  • Anonymous
    ms banks
    Feb. 06, 2009

    I am sorry to hear that you are going through this but at the same time I am glad to know that I am not alone.  I am a mother of 4 and 37 years old working full time with a husband and no one ever understands when I say I have this Thoracic outlet syndrome..  For some time now I have been dealing with this and some days I dread work because of the...

    RHMLucky777

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    I am sorry to hear that you are going through this but at the same time I am glad to know that I am not alone.  I am a mother of 4 and 37 years old working full time with a husband and no one ever understands when I say I have this Thoracic outlet syndrome..  For some time now I have been dealing with this and some days I dread work because of the pain no one can understand this if they have never been through this.  My husband just listens but he does not know the magnitude of the pain I really go through each day I wake up I dread to move my arm.

     

    So thank you for sharing on top of this they think I may have fybromyalgia as well by the end of the week I just drag my feet because it hurts to walk and move around on top of everything else.  I can only take medication at certain times or I will  not be able to do my job so it is a constant battle do my job or medicate to stop the pain.

     

    Good luck to you

    • Anonymous
      Kstans
      Mar. 11, 2009

      Hi to all, as I am reading the posts & replies I am shocked I don't hear anyone talking about rehab exercises!  Here are a couple of sites - do these exercises and you will get better.  Also, get the ergonomics (work & home) and your posture perfect - this is your only hope! 

      http://intraspec.ca/PIIS0749071203000817.pdf

       

      http://www.med.umich.edu/1libr/sma/sma_thoracic_rex.htm...

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      Hi to all, as I am reading the posts & replies I am shocked I don't hear anyone talking about rehab exercises!  Here are a couple of sites - do these exercises and you will get better.  Also, get the ergonomics (work & home) and your posture perfect - this is your only hope! 

      http://intraspec.ca/PIIS0749071203000817.pdf

       

      http://www.med.umich.edu/1libr/sma/sma_thoracic_rex.htm

       

      I feel better already - just a couple of weeks.  I've lost eight years of my life to this pain because the doctors didn't believe me or were lazy or just considered me a 'mystery'!!

       

      Best of luck,

      Karen

    • raeben
      Oct. 06, 2010

      Early on the Dr's sent me for Physical Therapy and gave me home exercises to do as well.  I also tried massage therapy, meditation, biofeedback and chiropractic all to no avail.  I am happy to hear that you have improved by using alternative therapies but remember that not all people respond the  same to the same treatments and that everyones...

      RHMLucky777

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      Early on the Dr's sent me for Physical Therapy and gave me home exercises to do as well.  I also tried massage therapy, meditation, biofeedback and chiropractic all to no avail.  I am happy to hear that you have improved by using alternative therapies but remember that not all people respond the  same to the same treatments and that everyones condition varies from person to person as well. My diagnosis since my original post has changed from TOS to RSD or Regional Sympathetic Syndrome or CRPS or Complex Regional Pain Syndrome. I have been told that TOS is actually an outdated diagnosis and that it is now called RSD or CRPS and can spread throughout the entire neurological system and can be extremely debilitating. The pain has been ranked higher on the pain scale than terminal cancer. Terminal cancer is around a 32, RSD is around a 45. There are tons of support groups and infromation groups out there on the web. You can simply plug in in RSD in the search engine or contact me directly and I'd be more than happy to get you to the right places.  They have truly been a God send to me. Very informative and they let me know that I wasn't crazy and I wasn't alone. I wish you and everyone the best in your journey!

       

      Michelle

    • josie
      Mar. 15, 2011

      Hi I have been suffering with tos for many years was dx with bilateral cervical ribs in 05 and told to have the right one remove because it wa causing all my shoulder axilla finger problems. So i saw a promient vascular surgeon in nyc who removed my rcervical rib and first rib,sent me home. My ulnar nerve was entraped in 2 places sent to hand surgeon after...

      RHMLucky777

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      Hi I have been suffering with tos for many years was dx with bilateral cervical ribs in 05 and told to have the right one remove because it wa causing all my shoulder axilla finger problems. So i saw a promient vascular surgeon in nyc who removed my rcervical rib and first rib,sent me home. My ulnar nerve was entraped in 2 places sent to hand surgeon after neuro had emg done 45 days later had to have ulnar nerve transposition. Today 2011 still exp pain in axilla shock like thank god it the right side our i would think i was having a heart attack  hand goes into spasm without notice iam an RN not good on job just developed rsd this  year hand turned blue painpull dont touch my arm. Have had 5 todate ganglion blocks feel they have helped some. Just wish people would get out of the habit of coming over and toching hitting your arm in a greeting When you cry out in pain the get offened and you are left to defend your self and told not to be so sensitive .You have rsd let me wak you and then see who is sensitive. my migraines have improve after the rib was removed i still take topamax folic acid

    • Leesh
      Aug. 30, 2013

      karen thank you for this...any ideas on pregnancy? im 7.5months and im dieing...the trap pain and pec pain and nerve pain is killing me.

  • Anonymous
    renee
    Jan. 22, 2009

    I'm 41 and have been suffering since I was 32. I've had some back injuries along the way and am now taking pain medication just so I don't have to quit my job. It really gets me down at times, especially when I am having a really bad day, pain wise. I have noticed that the weather changes don't help. I live in a cold climate. I am seeing a neuromuscular...

    RHMLucky777

    Read More

    I'm 41 and have been suffering since I was 32. I've had some back injuries along the way and am now taking pain medication just so I don't have to quit my job. It really gets me down at times, especially when I am having a really bad day, pain wise. I have noticed that the weather changes don't help. I live in a cold climate. I am seeing a neuromuscular specialist on Monday. I'm just so tired of doctors throwing pills at me with no answers and essentially no relief. When I do pay attention enough to keep up on the massages, it does help. My issues have now progressed from general "all over" joint pain, muscle and tendon tension to spasms and numbness and cramping in my hands and sometimes feet. I can see the swelling in my hands on a bad day. It just is so hard when your body seems to be turning on you at a relatively young age. I've been tested for everything under the sun except hepatitis and lyme disease. They only find arthritis in my spine. I tried some arnica rub for the first time and that seemed to help. I actually woke up this am feeling halfway normal, not like I got hit by a truck. I purchased it at walgreens and it is suppose to have a really good reputation with injured athletes and has been used in Europe for many decades. Sometimes I have to take a pain pill just to get out of bed. :(  I'll keep you informed if you are interested in any help or insight I get from this new specialist. I have not made the time for a massage since before Christmas, and I can really tell the difference. Give it a try if you can and stay well. Renee'

     

    Here's my supplements:

     

    Fish oil

    Magnesium

    acidopholis

    b complex & C

    Just started Bromelein, the latest and greatest for inflamation

     

    Any insights you want to share with me would be appreciated!

  • Anonymous
    Renee
    Jan. 20, 2009

    My pain story is simmilar to yours. The thing that has helped me best is massage every week. Good luck.

    • raeben
      Jan. 22, 2009

      Thanks for replying.  It's nice to have someone who understands exactly what I am going through.  Most people are like "What?".  Have you tried any series of steroid injections?  Are you on daily meds to control the pain?  I have considered massage and actually my mother sees a massage therapist for her Torticollis.  I don't know...

      RHMLucky777

      Read More

      Thanks for replying.  It's nice to have someone who understands exactly what I am going through.  Most people are like "What?".  Have you tried any series of steroid injections?  Are you on daily meds to control the pain?  I have considered massage and actually my mother sees a massage therapist for her Torticollis.  I don't know if you are familiar with that, sometimes it's listed as Wryneck, but it is basically a form of Parkinson's it just only effects the neck muscles.  She's been suffering with that for 20 some years now.  She gets Botox injections every 3-6 mos. and was seeing her massage therapist once a week.  Incidentally her massage therapist also has Torticollis.  Anyway, my mother has greatly benefited from massage and her therapist offered me a free massage to see if it helps.  I have also been considering accupuncture, biofeedback and yoga.  I'm willing to try anything at this point.  Well anyway I wish you well.  It was nice to hear from someone who understands my pain and perhaps we can keep in touch if one of us finds a surprise relief if even only temporary.  Best regards!

    • Goldfishchick
      Feb. 22, 2012
      I have done acupuncture and massage. I am on my 2nd year I have a metal plate in my neck, memory loss issues from a major head trauma and tos. The acupuncture worked good for pain and I had a dry needle technique done which is they leave needles taped to you for as long as you can stand them in only problem is once they are out the pain is back. For me the...
      RHMLucky777
      Read More
      I have done acupuncture and massage. I am on my 2nd year I have a metal plate in my neck, memory loss issues from a major head trauma and tos. The acupuncture worked good for pain and I had a dry needle technique done which is they leave needles taped to you for as long as you can stand them in only problem is once they are out the pain is back. For me the massage therapy is unbelievably painful my migraines got worse and so did the pain in my neck and arms. The thing you have to remember is that even though you can get suggestions from here that everyone responds differently somethings work and some don't. I am on the try anything plan right now because I am sick of 30 pills a day to somewhat function and I would really like to enjoy my 3 year old more! Good luck to all of you and keep trying you never know it might just work for you!
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