Anyone else with sacroiliitis?

gretta collins · Jan 8, 2005

I just received results from my recent MRI - acute sacroiliitis! I knew I had suffered this in the past, but my orthopod said it was rare for it to show up on the MRI; that mine was an acute case.
Does anyone else suffer from this? There are no surgical options, only meds and PT.
Would love to hear from you if you experience this and how you relieve your pain.

I too recently was diagnosed with sacroiliitis. What a shock! How do I handle the pain? I had approximately four months of PT and am now on a maintenance program. Also had SI joint injection of a steroid (Kenalog)through Mayo Clinic in Rochester, MN which improved sleep quality tremendously. Additionally I use Ultram 50mg at bedtime if I've had a miserable day and usually wake up feeling better. Some days I also use Tylenol 1000mg and Ultram 25mg. I'm still trying to work full time and some days wonder how long I will make it. I don't have a long range plan yet and am to return to Mayo Clinic on February 1 for that. How do you handle you're pain? How often do you have pain? Do you have more involvement such as spondilytis? I too would like to hear from you.

sfamom04 · Jan 29, 2005

I just received results from my recent MRI - acute sacroiliitis! I knew I had suffered this in the past, but my orthopod said it was rare for it to show up on the MRI; that mine was an acute case.
Does anyone else suffer from this? There are no surgical options, only meds and PT.
Would love to hear from you if you experience this and how you relieve your pain.

I cant believe this is so common. I just found out today that I have sacroiliitis. My ortho said a cortisone injection should be the first try if that does not work try something called nerve ablation. I am not sure about the spelling. He did say there was a surgery for this but it is a major surgery and scary sounding. I am hoping the injection will help. I have been pretty miserable with this. My quality of life has not been the greatest, when your in pain there is not much you feel like doing. I would like to know how you are dealing with the pain. Or what your symptoms are. Thanks for posting this. I am new to this site and I am glad I found it.

teeituptom, BSN, RN · Jan 29, 2005

I suffer from it also

but not as bad as I used to

I started wearing copper and magnetic bracelets, they do wondrous things for me anyway

keeps me golfing at anyrate

gretta collins · Jan 29, 2005

I cant believe this is so common. I just found out today that I have sacroiliitis. My ortho said a cortisone injection should be the first try if that does not work try something called nerve ablation. I am not sure about the spelling. He did say there was a surgery for this but it is a major surgery and scary sounding. I am hoping the injection will help. I have been pretty miserable with this. My quality of life has not been the greatest, when your in pain there is not much you feel like doing. I would like to know how you are dealing with the pain. Or what your symptoms are. Thanks for posting this. I am new to this site and I am glad I found it.

Couldn't find a date. But today is January 29, 2005. Sacroiliitis is not fun! and it definitely affects the quality of life. I was diagnosed in the fall and my primary physician sent me to Mayo Clinic Rheumatology for evaluation and treatment plan. So far I have had tests, P.T. and SI joint injections under CT with Kenalog and Marcaine(sp) done at Mayo. My next appointment is Tuesday, 2/1 at Mayo.

The injections and P.T. helped a lot. Right now I'm pretty good. I use Tramadol 50mg at night and this really helps me wake up in the morning without so much aching and I can walk better. I slept better right away after the injections. I used to get great relief with Vioxx and other NSAIDs but can no longer use them after a bout with colitis.

I've been e-mailing another nurse too. You can e-mail me at:

[email protected]

Will look forward to hearing from you.

oramar · Jan 30, 2005

You poor things, I feel so bad for you all. This thread got my attention because I know someone who is undergoing treatment for this. I had never heard of this condition before and now I see others suffer from it. All I can say is the person I know has a LOT of pain. They get injections just like you do. I can't help wonder if nurses are more prone to this condition.

mattsmom81 · Jan 31, 2005

My ESI's to the area helped my SI joint pain tremendously. I know a nurse who had a rhizotomy done to the area and she is thrilled with the results. It was not a 'major surgery' (it was performed under fleuro at an outpt surgery center..like an ESI)but it WAS painful as she needed to stay partly awake initially to indicate the nerves giving her problems so the doc could 'fry' them. She regrets not doing it years earlier. Good luck to you.

sfamom04 · Feb 1, 2005

I too recently was diagnosed with sacroiliitis. What a shock! How do I handle the pain? I had approximately four months of PT and am now on a maintenance program. Also had SI joint injection of a steroid (Kenalog)through Mayo Clinic in Rochester, MN which improved sleep quality tremendously. Additionally I use Ultram 50mg at bedtime if I've had a miserable day and usually wake up feeling better. Some days I also use Tylenol 1000mg and Ultram 25mg. I'm still trying to work full time and some days wonder how long I will make it. I don't have a long range plan yet and am to return to Mayo Clinic on February 1 for that. How do you handle you're pain? How often do you have pain? Do you have more involvement such as spondilytis? I too would like to hear from you.

My Dr. told me I needed to start with the SI injection and I am scared to death of this thing. I am hoping it helps. I am not sleeping very well. They put me on Mobic and I think it is making me feel wierd is the only way to describe it. My pain is not as bad as it was a week ago but still there. I was pretty good this weekend until I went to work today and I guess getting up and down all day it started hurting again. Do you have to watch how you bend and turn? It is crazy. I am so glad I found this website to comiserate with someone who is going through it too. Good Luck tomorrow. Let me know what they say, I will pray.

sfamom04 · Feb 1, 2005

I suffer from it also
but not as bad as I used to
I started wearing copper and magnetic bracelets, they do wondrous things for me anyway
keeps me golfing at anyrate

I will try anything at this point. I will have to look for those bracelets. Do you get them anywhere?

gretta collins · Feb 1, 2005

My Dr. told me I needed to start with the SI injection and I am scared to death of this thing. I am hoping it helps. I am not sleeping very well. They put me on Mobic and I think it is making me feel wierd is the only way to describe it. My pain is not as bad as it was a week ago but still there. I was pretty good this weekend until I went to work today and I guess getting up and down all day it started hurting again. Do you have to watch how you bend and turn? It is crazy. I am so glad I found this website to comiserate with someone who is going through it too. Good Luck tomorrow. Let me know what they say, I will pray.

I was really scared too (I've only had it done once) but the doctor who did it was great. And I started sleeping better that night. It's starting to wear off and I will have it done again around March 1st. Unfortunately I may not be able to have the same doc because of the HMO.

I was a little disappointed today because she said that for now this is probably all there is and that I would have to live with and deal with it. She said I can have the injections every three months and will have me see a physiatrist for P.T. evaluation and guidance for me physical therapist. I am to go back in 6 months for reevaluation.

I really appreciate knowing you were praying for me. I will do the same for you and pray that you are able to work without too much pain ----and that you can do the things you want to do. Let me know if you decide to have the injections.

sfamom04 · Feb 2, 2005

I was really scared too (I've only had it done once) but the doctor who did it was great. And I started sleeping better that night. It's starting to wear off and I will have it done again around March 1st. Unfortunately I may not be able to have the same doc because of the HMO.
I was a little disappointed today because she said that for now this is probably all there is and that I would have to live with and deal with it. She said I can have the injections every three months and will have me see a physiatrist for P.T. evaluation and guidance for me physical therapist. I am to go back in 6 months for reevaluation.
I really appreciate knowing you were praying for me. I will do the same for you and pray that you are able to work without too much pain ----and that you can do the things you want to do. Let me know if you decide to have the injections.

Dont you hate it when Doctors tell you basically to deal with it. I didnt know that you could have those injections so often. What are your injections with , Cortisone? Do you think PT will help? I had PT when they thought it was a herniated disc and it made me worse, but they thought it was that that was hurting. This last Dr. thinks it was the SI the whole time. I am going to try and take my Mobic in the AM to see if it makes me feel any different. I guess I am grasping at straws. The nurse was suppose to call me back to schedule the injection but nothing yet. Thanks. I believe prayer works in all situations. It also helps to have someone to talk to that is going thru the same things. Talk to you soon. By the way, if you dont mind me asking how old were you when you were diagnosed. I am 31. My doctor that I work with seems to think it is young and that I should have the Rhuemitoid factor test done. (Spelling) I am nervous about that too.

MomNRN, BSN, RN · Feb 3, 2005

Hi to all fellow sufferers -

I started this thread in October of 2003. I can't believe it has been that long since the MRI. I continue to suffer with pain. My ortho never suggested the cortisone injections, though I often wondered about them. I am quite the baby when it comes to pain or needles, so the thought scares me. I can't imagine how much worse the pain could be though.

After that MRI, I started PT. It went on for several months and did seem to help. The PT thought the low back pain and sacral joint pain may be related to too many c-sections (3) and crappy abdominal muscles. There was some thought that the sacral pain was really low back pain referring into my sacral joint.

This sounded plausible to me. But, by this point all I knew was that the pain was debilitating and there were days I could barely walk.

I manage my pain with the following: good shoes, abdominal exercises, and medication. I can rarely get through a day without some form of NSAID. My sleeping has improved but I have to be careful how I move at night. I have found that if I roll up a small hand towel and wedge it under one side of my butt, it lifts the joint up and the pain is relieved. It is almost like I am crooked.

Some days, despite all of my best intentions, the pain is excruciating! On those days a heating pad and Darvocet are my best friends. I have tried almost every conceivable pain med, but Darvocet works the best.

I also was tested for lupus and rheumatoid arthritis - both negative. How the hell I ended up with this I will never know. I have been suffering since about 1998. A friend gave me a book called, "Healing Back Pain - The Mind-Body Connection" by John E. Sarno, MD. I have only read several pages, but sounds interesting.

When I was in nursing school, one of my psychiatry courses discussed psychosomatic pain and its causes. I will never forget reading that sacroilitis can be connected with unresolved grief. My second child was born severely brain damaged and died at 7 weeks of age. It was a very difficult process that I did not handle well. I have always wondered if it was related. I will read the book and learn more.

Anyway, I have seriously gone on longer than I intended, but I was glad to hear there are fellow sufferers out there. I am currently corresponding with another nurse who found me at this site. It is encouraging to know others hurt like I do.