Thursday, April 10, 2008
Complications of ankylosing spondylitis can be very serious, including difficulty breathing, spine deformities, lung infections and heart problems.
Sacroiliitis
1/15/10 11:52pm
Hi Everyone.
I am currently beginning to understand my condition. After a sporting accident in 1982 I have been constantly troubled my lower back pain, especially in buttocks & sacroiliac joint. Underwent a spinal fusion (L5-S1) due to spondylitis but although now well aligned but still have ongoing pain. Getting desperate for some relief having tried medications, physios, chiropractors, massage, yoga, etc...Wouldn't advise opioid medications as they had me with strange thoughts & then eventually suicidal ideations & a visit to the psych ward. So I have an appointment with spinal clinic in Melbourne (Australia) in 2 weeks which I am looking forward to but also fearing a life long diagnosis, which is highly possible. Just wanting to know if anyone with ongoing sacroiliac pain has any luck with particular medications or any other relief technique such as icing. Also interested in any diet regimes or lifestyle changes which have assisted with pain levels. I read your posts with great empathy & understanding. Thank-you..
1/21/10 2:23am
I was first diagnosed with degenerative arthritis in 1989. When I was about 6-7 y/o I was diagnosed with Leggs Perthes Disease, today they call it avascular necrosis. My right hip was replaced in 2004. Both of these conditions go hand in hand.
In 2007, after falling down my backsteps during an ice storm caused the severe pain in my lower back which radiated into my left hip area and down my thigh. Just a slight twist or movement literally makes me catch my breath and cringe in pain. I went to a bone specialist and all he said was that I had arthritis. He gave me a lidocaine/kenalog shot in the lower back......it did absolutely nothing. I never went back to him. I felt he really didn't believe anything I had to say about the pain. As did my pcp who referred me to him.
When I relocated to a new state and got my medical records transferred I discovered that that specialist actually diagnosed my condition with sacriliitis, as well as chrondoblastomas in my left ilium. The other term for this secondary condition is "Big Cell Tumors". HOW DOES A DOCTOR F-A-I-L TO TELL HIS PATIENT THAT I HAD BOTH OF THESE CONDITIONS???
At least I now have proof that I have a condition that requires pain medication, real pain medication not that tylenol crap. If your doctor has prescribed you darvocet, or any other pain medication with acetomeniphen, find another doctor or get to a pain management clinic. My new doctor told me these types of pain meds are not for arthritic or chronic inflammation issues.
(Great, I finally feel vindicated when I have complained to may old pcp for 7-8 years about my pain)
My current doctor put me on 10mg methadone 2x a day (it's time released), and gave me an rx for Tylenol 4's when the pain is over the top. (this occurs when I get groceries, sit for long periods of time like a movie theater, and bad weather).
This combination has been the best pain management since I was diagnosed in 1989. The first dose I took I literally slept through the night and did not wake up in pain for the first time in years!
But you have to be very diligent not to over do the Tyl 4's because the mix of the methadone with the Ty4's can cause bad side affects. I was taking them to stop all the pain, but you just can't function like a normal human being this way. Sadly, I had to come to accept that I will NEVER be pain free.
And the excercise..........PLEASE Doctors, this causes me pain and I'm all stoved up for days even weeks after excercises, walks etc.
I am on disability but used to be able to work part-time, but not any more. Since the fall in 2007, I hobble around like an 90 y/o woman and I'm not quite 50. I am not able to return to any work at this point in life. I had to give up things I loved to do for entertainment like fishing and stuff.
3/ 2/10 7:57pm
I like this one Lady. You had me cracking up. 
What I'd like to do is set down & look through my medical record from the pain clinic, that would take awhile it's a huge file. Because one time i'm being told one thing & the next I know it's something different. Dang Foreigh Drs. ya can't understand what they say half the time.
I just want to feel 40 & not 70 
. I know the wheel chair is the next option for me.
2/ 2/11 5:41pm
1/20/10 2:58pm
I have noticed also that in the morning after waking that my entire backside( from buttocks to shoulder blades) is in pain. And it takes a pretty good effort to get out of the bed. I usually have to ry and roll over on my right side and force myself upwards using mi right arm. If I sit too long, or move around a lot I come into some pretty severe pain across the top of my buttocks and my low back. Pain is always present in the left buttocks and low to mid back areas. I sometimes have numbness in my lower left leg. Also, I have had matter build up in my eyes from time to time. Driving to appointments, or to town can cause terrible discomfort and even the numbness in the leg such as where I have to get out and move around a little bit to try and alleviate it. I only have a very slight limp(no hobbling). Was in a work related accident which brought on these symptoms and my employer sent me to a doctor and he said there wasn't anything wrong with me. My legal team sent me to a doctor and he diagnosed me with sacroiliitis(7%).
2/ 3/10 11:18pm
I was just diagnosed with this problem but for 20 years my normal doctor in new mexico diagnosed it sciatic nerve about 20 years ago they want to do the injections to me which i refused my question any of you who took these injections did it cure the inflamation or did it return. My problem started with a shot to begin with when I had my thyroid removed it was during my pre-op they gave me an injection in my right hip which I had severe pain all down the right side of my body since then I have had this problem does not matter if i sit or walk I do have my good days
5/ 6/10 8:18pm
I tired of my husband not believing that I am in the worst pain in my life. I mean I know that as his wife I am supposed to be there for him, but hell when is he going to be there for me? Sometimes people really get beside themselves, when it is not them in pain. I see from reading these articles, that my pain is getting worse, I have been having high blood pressures, and this excruciating numbness/pain that is now in my left shoulder, I have no clue what it is, but after reading your statements I know that my conditions are getting worse. In fact, I believe its spreading. I too have the worst pain in my thighs, buttocks, down my legs, my legs and shoulders are numb and this hurts like hell, but when does it end? I have taken care of other patients for 16 yrs. and now my biggest fear is that I will be one. I had PT, worked for a min. and then it made it worse. This is really messed up. I can not take the meds because they cause me to eat all the time,and when I am not eating I am sleeping even more, I can't take these meds because I can lose my job for being at work under the influence of medication. This is terrible. I am a cna and I lift heavy people all the time. I am on my feet all the time. Sometimes I have to do sitter cases and I am sitting for 4-8 hours a shift, by the time I get off I am no good to no one. Sometimes I am at work and I will be walking and out of nowhere I get this stabbing pain in my groin area, its like Micheal Myers had one of his huge butcher knives and pulled back with all of his might and came down as hard as he could and stabbed me in my groin and sometimes this happens all at the same time even the thigh hip and leg pain. Can you imagine walking a patient when this happens? I automatically go down in a limp, I don't want to fall down because I don't want to get sent home, and possibly lose my job because you know when a job knows you can't do a job due to an illness, you can pretty much rest assured that its a wrap for me then. I use to dance all the time but now this too causes great pain. I am not supposed to wear heels, but do you know how degrading this is for a woman, and a woman who loves to dress? OMG, what am I going to do? Some mornings I can barely get out of bed for work but I have to push myself to do so. My attendance is getting out of hand, I am scared to death.
5/ 8/10 9:26pm
4/11/12 11:54am
I know your pain! Mine, though, for the time being is located in my lower back, hip, buttock and front of thigh on the left side. The pain is excruciating and nobody seems to get how much pain you are in. But the thing I am replying about is for you to quit working in the job you are in. I know it sucks but all you're doing is making it worse and setting yourself up for lifetime of pain. I also worked through it for many months until I couldn't do it anymore. If I had stopped at early onset, maybe the pain wouldn't have been so bad. At that time, if a took a couple of days off I felt better until I started into work a couple of days and then it was back. Now, after pushing myself for months I'm in chronic pain all the time. I just wish I could go back and would have known more about this disease to know to stop what is causing my condition and wouldn't have made it worse. For all you sufferers out there, quit trying to push through the pain, you're just making it worse!! Easier said than done but is this job you have reallyy worth the pain for the rest of your life?
4/11/12 4:18pm
I agree with you on work related causes of this disability. My original cause was bending, lifting, twisting, work related. I kept going back, doing it again and again after bouts of inflammation and being off work for 6 weeks at a time, out of necessity, until I could no longer think about continuing the same work activities. My back pain got worse and worse, with it taking less time on the job for my back problems to become fully inflammed, and I was completely down again, disabled. I have not seen one person describe fully what I have been through repeatedly for years when my lower back, SI joints become fully inflamed. My entire low back area and around both hips completely lock up with excruciating pain. It is impossible for me to stand up straight, I can't bear my own weight, and can't lift my feet to take steps. Hold onto furniture, walls, counters, bent over, just slowly dragging each foot forward to move around is all I can do for at least 6 weeks at a time, laying on floor at rest is all I am capable of until the inflammation subsides. Afterwards the pain is still too much to live with for a long time, and takes almost a year for pain to subside to about a level 5. Nothing has ever helped me prescription wise. Pain meds only mess up my mind and rest of my body, does not help enough I can stand up. The only thing I have found to be an answer, don't do the things physically which cause SI joints to become inflammed in the first place. I finally had to go on disability.
5/ 8/10 9:16pm
hi there, i gave birth 4 and half years ago, and docs said i split my pelvis. i was in so nuch pain and literally couldnt put one foot infront of the other!! i had to "shimmy" my feet over the ptep to get into the shower and basically was just given a elastic brace and crutches, i improved a lot but never quite felt the same and went to various docs and was just perscribed dozens of painkillers. they wouldnt do an x ray on my pelvic region because it would damage my eggs.
Last Sat night i was in work ( in a hotel) and i started getting these unbelievable pains in my hips, lower back and pubic bone region, iy was so bad i couldnt pinpoint where the pain was stemming from!! i was in agony to say the least!
I went to different doc and told him the story and immediately he diagnosed me with sacroilitis. i have to go for mri scan asap, but im so worried about getting pregnant again as i would love another baby? im so scared and im only 29!!
5/28/10 8:03am
I had 2 laminectomies, '90 and '96. I've had alot of back pain since, but was able to play tennis and golf again and also walk almost every day. Last May I started having pain iin my left buttocks and have been to 5 doctors to figure it all out. (MRI, exrays, injections, etc) Finally I was told that it was not my back, but my sacroilitiac joint. I am now going to physical therapy 3 times a week and am trying acupunture. So far, no luck. The pain is killing me and and I am not able to do many of the things I love to do. My mood is not good and I'm really at my wit's end. Does anyone have any other suggestions? Thanks.
8/11/10 12:50pm
From what I've read on the net, in various places, The Sacroilliac joint (si joint) can 'pop' out and go back in in the wrong place, much like flywheel in a car; it feels like my leg will fall off and only hanging on by skin, and a pain in my left buttock, behind the muscle, and in the front, behind my ovaries (on the spine/sacrum). It feels like a fresh bruise every day. The si joint is in the wrong place, creating the hips to be uneven, creating the spine to be crooked, causing pinching of the spinal nerves.
I've done everything that you listed: saw MAPS in chaska and edin prairie, Minnesota for spinal injections and even Radiofrequency. the best that came out of those appointments was the Gabapentin, 7 times a day, 300mg. (Tells the nerves to stop talking to each other.) I still feel burning in my low back, from the nerves being pinched. My si joint pain is constant. The only Dr addressing that pain is the Osteopath I see, and he diagnosed me, when no one else could figure out why I had pain. I decided to give my body to science because only 1 dr knew what was wrong with me.
1/ 6/11 5:12pm
For all of you - do you feel the pain throguhout your body, or just the lower half? I feel like my whole body is affected by this. I get regular muscle twitches in the bottom half my body and occasional ones in my shoulder and arm. My eyes are dry all the time and my skin has broken out, especially on my back which ever happened before the sacroiliitis. I have convinced myself I have Multiple Sclerosis, which has given me extreme anxiety; however, my doctors have assured me that sacroiliitis can cause all of this. Do any of you get these symptoms? Also for the women with sacroiliitis - do you notice the pain is worse during ovulation and right before your period? Thank you everyone!
3/ 3/11 2:16pm
Hi, yes, sometimes my shoulders and neck are really painful, but it's usually my lower/mid back. My doctor said it can affect all the muscles connected to this joint. And yes, it will be worse around ovulation and mensturation because hormones get released that can affect it. Just another thing we can enjoy about being a woman I guess.
3/22/11 12:17pm
Hi there,
I realize that this may not help everyone, but I just wanted to say that about 6 years ago my sacralilitis started bothering me. Unbeknown to me at the time I actually have a gene called HLA B27. People who cary this gene are prone to having genetic arthritis type conditions such as spodylitis, sacralilitis and rheumatoid arthritis. After having numerous cortisone shots, and taking every type of pain killer and anti inflammatory my arthritis doctor recommended trying a drug called sulfasalazine, which is commonly used to treat inflammatory disorders such as colitis. I just want to say that after having my blood test and being properly diagnosed I can now move around again normally and have minimal pain. For me, my experience was debilitating, I was unable to sleep and walk normally for over a year, this all began when I was 24 years old. If you haven't had a blood test maybe ask your doctor for one. Ask them about sulfasalazine, ask about having a cortisone shot when you commence these pills. All of this together has given me an Enormous amount of relief!!!! hope this helps.
4/ 8/11 10:40am
3/ 7/12 3:20am
So good to know somebody else suffers worse during ovulation and period. My left si joint is far worse and pain radiates up to my head and down to my toes on left side. I have 3 children under 5, normal life with them is impossible with this disease and intimacy with my husband is next to impossible most of the time :(
8/16/11 2:22pm
This article is very good description of what I have been suffering from for years. Many times the pain has made it very difficult and a few times impossible to walk.
One thing that has also made a huge difference me, in addition to stretching and exercise (as mentioned) is not keeping my wallet in my back pocket!
Best wishes,
John Penn
2/12/12 7:38am
I have recently been diagosed with possible SI as a result of an MRI scan. Over the last year have had great difficuilty sitting to such an extent that I either stand or lie down on the floor thus very restricted lifestyle. Physiotherapy/exercise sessions have not helped my condition. One of the activities that has helped with mobility is Tai Chi. I cant recommend this too highly. It is one of the few things I am able to do without pain.
3/ 9/12 6:12pm
I started having pain in December 2010, just annoying then. By July the pain had increased so much that I couldn't sleep at night and started falling asleep, which made me fall down and drop things, at work. By August I couldn't walk, so I had to quit my job. I had physical therapy, which increased my mobility but my pain is still quite severe. After reading these posts, it seems that I will never have any relief from this pain, which gets worse daily! There really isn't any hope for this?!
3/21/12 3:14pm
Hi everyone, just been reading all your comments about Sacroilititis, i had never heard of it before, but in October i had a car crash, and my car was a right off. I had various injuries, but a few days i noticed on my right bottom cheek, it was black and blue, i took no notice of it, but after a while i started to get low back pain, i have had lower back problems for many years so took no notice, but it sudden started getting worse, pain in the lower back, deep inside, i couldnt understand what was wrong. On a visit to the Doctor i was told it was Sacroilititis, i'd never heard of it. so i came home and looked it up on the internet. I was shocked to see all the problems and the pain it caused. My pain started getting unbearable, cant sit, stand, lie down, the pain is so bad, you cant get away from it. I am being referred to see a Neuro Surgeon. I had to have my Doctor come out to see me, i felt so ill, cant sleep, cant eat, sick all the time. and she has prescribe Oramorph, i know its Morphine, but i am so desperate, i will try anything. It took about an hour to kick in, but i lay on my bed, and slowly i felt the pain,ease, for the first time in months i have been able to lie in one place for more than just a few minutes, my legs went numb, and i was able to relax, it was wonderful,. Now 4 days on, i have been able to sleep, walk about,do the odd job, and take a little more pride in myself. I dont know if anyone else has tried Oramorph, but its the only thing that has helped me, i dont like taking tablets, but needs must, i still dont know that much about it, how long it lasts, will it ever go, does it go and come back, or have i got it for life, but at the moment, i feel good, and thats all i care about, hope all you other poor people who suffer from this horrible pain, find comfort too.
By Ravin— Last Modified: 04/11/12, First Published: 04/10/08
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You can also have a sacroiliac fusion which i have had but unfortunately it didn't work for me.
I was diagnosed 6 yrs ago but due to the severity i can not be cured and i have been left permanently disabled and requiring a wheelchair to move.
I would not recommend an SI joint fusion, all the patients that I have seen that have had this performed have increased pain, I have not seen any patients whom this has helped. Cortisone injections under a fluroscope, Radiofrequency lesioning of the SI joint, or Prolotherapy have better outcomes than surgery.
I did have a cortisone injection with the fluroscope into the joint a few months after it started to get worse, but unfortunately as soon as the needle went near the joint my body went into spasm causing my whole body to shake. To be honest it didn't really give me any relief at all.
I've also had; fluroscopic Radiofrequency lesioning/ablasion in my Lumbar. It's supposed to work 6 Mos. to a Yr. or so. I've had this proceedure done approx. 4 times. Each time it seems it doesn't last as long as the previous. I would like to try the pain pump but the pain Dr. thinks thats a last resort option. I have a TENs Unit & it seems to help me some, as well as medications. Yet I am still in pain daily.
I had a total hip replace, rt side, in March do to a motorcycle accident I had in 1972.
I have also been diagnosed with a degenerative disc at L5 and buldging disc at L4, nerve damage at L5 S1 with no nerve root compression. I have sinced been diagnosed with sacroillitis, can't sit or stand very long. I had a SI Facet injection on July 28th and so far it hasn't done a thing. Percocet 3 times a day takes the edge off but not enough. Not sure what the next step is going to be. Getting tired of this as I have been on disability since April 2007.
I agree with this statememnt. I had the SI Joint infusion last Aug 0f 2008 and I am worse off now. I went for the fluroscope injections again yesterday. I was having these injections in 2007 then my Orthopedic thought the surgery may help me, but the pain is now worse after surgery and I am in constant pain.
Sounds like my problem, the pain doctor is currently treating me with epidural injections that are only irritaing the area I believe, I had gotten to where if I sit down before I can stand up something has to "click" VERY PAINFUL" each time,
anyway up in pain and began looking into this diagnosis and am beginning to figure out why I have not been treated properly as of yet. I believe my sacroiliac joint is the issue not just the DDD lumbar and cervical and the subacute combined degeneration of the spinal chord, its the joint pain
I am currently using fentanyl patch 50mcg every 48. It has its days but overall minimizes the pain levels to basically tolerable. Hope this works.
Mandy, Thats what my back is doing this sacroiliac fusion. Do your hips , low back & pelvic area's hurt? I'm guessing your range of motion isn't good because of this.
Mine hurt all the time & it seems nothing releives the pain. I'm in a constant 5-6 level even with all the meds. When standing I feel like my entire hip area is going to give out, drop out of me. Have you ever felt this way?
I am in constant pain in that area but any kind of movement at all seems to trigger intense pain, i'm unable walk very much at all and relieve on a wheelchair to get out of the house
I can't believe someone finally said how I feel. I keep telling doctors that I feel like my insides are going to fall out, and they just stare at me like I am stupid. I feel like I have a belt all the way around my hip area and it's 100 times too tight, and squeesing the pain down my legs, by butt, back, across my pelvic area..etc. There is so much pressure when I stand up that the only thing that relieves it is to bend over the bed, or to sit back down..and that only lasts a few mins. My SI joints, both of them, are already fused together, but they tell me its fibro, not AS. I am so confused, and frustrated, I don't know what to do.
I was also diagnosed with this five years ago and have done numerous shots and PT. I had the same results with the shots lasting less time after each one. I was put on medication and told just to live with it.
i fell on the stairs with my back heavily and developed back pains which emerges whenever i do exercises after a lumbar sacrol x-ray the conclution was spasm hydrosis sacroiliities present.which treatment is best for me.
I have been diagnosed with lumbar spondylosis sacrroilitis just a short while ago.But prior to that i have had 5 injections none have worked .my pain doctor has trieded me on a number of pain meds,nothing seems to help. It only dulls the pain but never goes away.I cant sleep at night my hipps ,thighs,and legs so bad.I don't know what to do.