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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)
Replies to "I have sacroilitis/ankylosing spondylitis that has left me completely paralyzed and only could get around on..."
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.
Hi ! I did google about E-D syndrome. I think I am hypermobile, but that is the only symptom I have from the list of symptoms on the Mayo information page. My physical therapist says she is hypermobile as well, so I don't think it is so uncommon.
As far as I know my hips are not uneven. My instability in my si joint may be caused by a condition I was born with. On the right side, my L5 vertebrae is heavier and has an additional piece that is attached to the sacrum, kind of creating an additional little joint there. This may make my si joint have some instability and also create problems higher up in the back.
I hope that you are working with a good physical therapist. My sister had a very bad si joint problem that was misdiagnosed as a low back problem. When she finally found a good PT she was on the road to recovery, though it took an additional year after that--going every week--to make a full recovery.
Thanks again for your reply and good luck with your appointment on Monday!
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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!!