Extreme sacroiliac and coccyx pain.

I am a 25yr old female and I have suffered from pain in both my sacroiliac joints for the past 5 years. In the most recent 2 years this pain has spread into my coccyx. I have clicking going all the way up my spine, occurring mostly when I move from a sitting to standing position, and when rolling over in bed. I also suffer from other symptoms such as ankle and knee swelling, which when occurs, makes it impossible to walk. Originally I was being treated by a sports medicine doctor for Sacroiliac joint dysfunction. My treatments had consisted of weekly physiotherapy, Pilates, stretching and core strengthening exercises and corticosteroid injections into both sacroiliac joints and my coccyx. I had also trialled numerous NSAIDs.

Nine months ago I had blood tests and a bone scan. I tested positive for the HLA B27 gene and a bone scan which revealed reuptake into my ankles and sacroiliac joints. I was given the diagnosis of seronegative spondyloarthropathy and sent to a rheumatologist. I do not have the typical early morning stiffness; in fact I notice more stiffness as the day progresses. After trialling even more NSAIDs, I was switched to a DMARD (sulfasalazine) with my dose increased to 3mg and I have been on this for the past 6 months. I have received no improvement in my symptoms from any of these drugs and am living in constant pain. I have been tried several analgesic medications (paracetamol, codeine, tramadol, oxycodone) none of which have touched the pain in my sacroiliac joints, so I have not bothered to continue taking any of them. I do not understand why none of these medications, especially the oxycodone, has not touched the pain. The pain I experience in my sacroiliac joints consists of sharp clicking, stabbing and crunching-it literally feels as if bones are crushing up against one another). My coccyx also causes the same level of pain, but it also feels like it is trying to push out of my skin, causing a deep pushing pressure feeling, it’s very weird. My physiotherapist says there is not proper movement happening in my sacroiliac joints, whatever is suppose to happen, mine is doing something completely different.

I am sure that this is more of a mechanical problem and my sports medicine doctor agrees. I am not too sure where I can go from here. Is there any further types of scans I could have done (I have already had a bone scan) which would reveal what is causing this pain. I am finding it near impossible to sit for long periods, and even walk on some days. Any thoughts or suggestions would be greatly appreciated.

Thankyou.

[Dnmh]

Txsilver has more experience with this then I do. I'm replying to bump your post to the top so she see's it when she returns...
Best of luck!

[kimi33]

I have suffered from this pain for over 2 years, I have had manipulation and steroid injections under general anesthetic twice. I have just been told that I have a large hook on the end of my coccyx as well as arthritis in the joint, I was told that I am a good candidate for surgery (removal of the coccyx) and although I am very scared of the procedure I feel that I am no longer living a full and happy life. So in the next couple of months I will go back to hospital for the surgerey!
You really should go and see a specialist and get it sorted out, it will only get worse believe me! I am dependent of drugs to help me sleep and to get me throught the working day, I cannot sit on the sofa and hate long car journeys, I look really odd during meetings at work when I stand up instead of sitting down on our really nice hard chairs!
I will let you know how it goes, and would love to hear if you decide to have any treatment.
Kim

[arthritisadvice]

I just got diagnosed with arthritis in the coccyx from the xray's. I've had the pain for two weeks. I could tolerate pain but this is very painful, I could relate to feeling as if the bones are rubbing on each other, and they rub hard I feel. Also, as I passed my hand over my coccyx region, the skin was hurting as if needles were under my skin. Fortunately, the needle feeling has passed, maybe the Ibuprofen helped with the inflammation. For the past two weeks I've been on Ibuprofen and Tramadol, I had to live on them in order to function at work. My profession requires a lot of sitting at work. So with the xray's diagnosing my situation, my stance is to take action in first, to purchase what's called a coccyx tailbone reliever. It's a cussion found at your local medical equipment store. Second, I started using Osteo Bi-Plex (glucosamine chondroitin) tablets, it's highly recommended for arthritis relief.
Third, I'm visiting the chiropractor for the heat pad treatments. I've had car accidents in the past, and have seen the chiropractor on/off.

I hope these treatment options help whomever reads this.  

[darren41]

i have had arthritis in the  coccyx for the last 10 years and i am in so much pain now. doctors are trying everthing. so i do not have much pain. but its not working. i am on so much pills. i would love to hear from u all. as i dont talk to many people. but some days i can not even walk that much. i would love to hear from u all and my e-mail is  ***@****
from darren

[19MRD71]

I have had sacroileatic and coccyx pain since the fall of 2003.  I was rushing and running my son to the daycare across the street.  I decided to take a shortcut and take my son down this little hill next to the daycare and because it rained the night before, I slipped down the hill and fell directly on my coccyx.  I had mild pain at first.  I will still having pain in February of 2004 and went back to the doctor.  She diagnosed me with sacroileatic and coccyxical (sp?) chronic pain which would turn into osteoarthritis as I have gotten older.  I manage it pretty decently for the most part (I live on Percocet 5/25- 4 tabs a day; on really bad days it's upwards of 6-8.)  I have tried spinal manipulation, inversion therapy, hydro therapy, massage therapy, taking Nsaids*, and even TENS to block the pain.  Well, the manipulation, hydro, and massage therapy are all pretty nice but they're only short term fixes and after they've worn off, I'm in even more pain.  The Nsaids I cannot take any anymore as they have caused ulcers.Then TENS is good enough, but the electric shocks my husband could deal with putting the pads on me, but he couldn't deal with the one thing that blocked the pain- but he couldn't deal with the out of pocket expense by our insurance.

I know there has to be someone out there who has the answer on how to control the pain and not let the pain control me.

Waiting your answers,
Mel