sacroiliitis

hi - does your joint 'snap' / feel like it's cracking out of place with your condition?

Hi! No, it does not snap or feel out of place, but when physical therapists examine my pelvis they say it is out of alignment. My main symptoms are butt pain, and some tailbone pain. I used to have a small amount of butt pain on just one side and just when sitting, now it is on both sides, and the last several weeks it is bi-lateral and I get it when standing in one place also. I am going back to try Physical Therapy again. I will post on my progress in the next few weeks. I think SI Joint problems are often misdiagnosed as low back problems, and I am surprised not to have found a discussion of SI Joint issues on this forum.

hi - i agree. i have this issue too. my pelvis seems rotated. mine cracks when i twist or step sideways and they say 'don't worry about the cracking'. hmm..

I have had bilateral sacroiliitis for several years now and Praise the Lord!!! I did get my problems resolved. I went to physical therapy off and on for 3 1/2 years with some help but my pelvis managed to stay "out of alignment" most of the time. At the same time as this, I have been suffering through severe functional GI disorders that have been quite debilitating. My Mayo GI doctor, Dr. Picco in Jacksonville, and I discussed the pain from my SI joint issues and he said because of the stress my body was already in from the GI problems he felt we needed to take care of all of my other issues. Thus, I went to Dr. Osborne at Mayo in Jacksonville, he is a pain medicine doctor. Dr. Osborne did two different injections series and things have been pretty good since then. I have to be careful with how I sleep especially, ie laying on my side means I need a pillow between my knees and I have to make sure I am aligned fairly straight when I sleep. I am also careful to stand straight, not leaning to one side or the other, and to sit straigth when I am having problems. I am careful to not do any "one-sided" exercises also. I try to keep even pressure on both sides so as to not pull myself out. My awesome physical therapits, Wade Rinehart in Lynn Haven, FL, taught me all of these procedures.

And thankfully, for the first time in years, I can now run without pain. I am working on running 4 miles a day, right now I run and walk my 4 miles.

Hope this helps.

Hi, first I am sorry you are having this pain. Second I am so glad to find a discussion about SI joint pain. I have had this since 2003 when I hurt my back lifting a patient. After the doctor did my FIRST spinal fusion and took bone from my pelvis for the graft, I have had moderate to severe SI joint pain. And I agree with one of the other posts. I think SI joint pain is often mis diagnosed as low back pain. I tell them it's my posterior pelvis at the SI joints that are so painful but they seem to blow it off saying that the SI joints don't move. Well MINE do. I have had several injections in the past. I recently read somewhere that someone had a fusion of both SI joints? Has anyone heard of this? Thanks so much.

I have sacroilitis/ankylosing spondylitis that has left me completely paralyzed and only could get around on crutches for no reason through most of my early 20s. First I had hip arthroscopic surgeries on both sides because labral tears were found. It took almost 5 years for doctors (even though I google-diagnosed myself correctly years ago) to have any clue what was going on even though I pointed directly to my SI joints every time.

I'm heavily tolerant/addicted to oxycodone -- the only thing that touches my pain. And have been in and out of PT for over 5 years, what a genuine waste of time, it only made my pain worse.
The ONE thing that significantly helped was Enbrel injections. I can now walk..although I am still in constant pain.

I am seeing a geneticist soon to confirm a diagnosis of Ehlers-Danlos syndrome (I have extremely hypermobile joints, especially hips). My hips/legs/butt/groin is in constant agony and the pain is my life.

But yes, talk to a rheumatologist about Enbrel. It's an injection you administer yourself once a week (nowhere near as scary as it sounds)

Wow, what a lot of challenges you have faced, but that is simply wonderful that you can run again. Thanks for those tips, especially not stressing one side more than another. My physical therapist suggested wearing a si joint "belt" to stabilize the pelvis while exercising, hiking, house cleaning, vacuuming. I think it does help. Since making the original post, I have seen my physical therapist, who said a vertebrae in my lower back, L4, had rotated out of alignment, and this was causing my back to spasm and also creating stress on my SI Joint. She gave me an adjustment and we have been working on stretching out the muscles that got pulled during the misalignment. My pain is 70% better, so that is promising. I have a special congenital condition called Bertolotti's syndrome ( congenital misalignment of L5, partial fusion there to the sacrum joint). My twin sister also has had SI joint problems and it took her two years to get better--she needed to find a physical therapist who recognized it was an si joint issue not lower back issue.

Thanks so much for your suggestions and all the best!!!

Helllo, and thanks for your reply! Also see my reply to ReneeP. The first doctor I went to in my area said joints like the si joint do not rotate. My sister had already gone through an si joint issue that was traced to her pelvis not rotating properly (si joint disfunction), so I knew he was wrong. But some "old school" orthopedists think this. As I posted to ReneeP, my physical therapist recommended that I wear an SI joint belt to help keep my pelvis in alignment while doing activities other than sitting and sleeping. I would ask your dr and/or physical therapist about this.It is helping retrain my muscles and support proper alignment. It took two years of physical therapy, but my twin sister has now completely solved her si joint alignment problem. I am hopeful if I keep on working with my PT and new orthopedist I will two. Before trying a fusion, I would try PT with someone who specializes in the si joint/pelvis and also ask about seeing if the si joint belt will help you. Thanks again and good luck!!

Wow, thanks for your reply and so sorry to hear about all your challenges!! My physical therapist thinks I am hypermobile as well but I have never heard of Ehlers-Danlos syndrome. I will read up on that. Have you tried using an si joint belt? My physical therapist just gave one to me and I am now wearing it for activities other than sitting or sleeping. She said it helps to create proper alignment in your si joint. Thanks again and good luck!!

Thank you for the repy! Yes, if you are hypermobile google the heck out of Ehlers-Danlos. In order to be diagnosed though you have to go to a geneticist (at least that's what they told me). And then you get diagnosed and just continue pain management because there's no cure. I just want to know if I have ED I guess. I'm going to the geneticist this coming Monday, it's been a long time coming.

Oh SI belt! I forgot to mention that. Not that it takes pain away, but it just makes it easier to walk. Are your hips uneven? A lot of people with SI problems have uneven hips/leg length....the SI belt helps hold the hips together I think -- kinda fix the alignment issues slightly 🙂
Is your belt just simply a belt? I started out with a belt but then my Rheumatologist suggested a shorts/belt combination. They are like running shorts and then the belt at the top. The shorts/belt is even better than the belt alone, I think.