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Posts (4)

Aug 26, 2011 · sacroiliitis in Bones, Joints & Muscles

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.

Aug 26, 2011 · Undiagnosed Hip Pain in Bones, Joints & Muscles

I was reading your post assuming you were older and then I got to the point that you’re 23 and felt instantly connected to you.

I’m 25, my pain began at 20.

I’ve had even more procedures and drugs and therapies than you have with no results, I used to be active and otherwise healthy and have no family history or reason for my paralyzing pain!

Have you tried any stronger pain killers? I take a ton of oxycodone every day but it’s the kind without Tylenol, so it’s less harmful on organs and I will gladly become tolerant to oxycodone than lay in agony.

Do you see a Rheumotologist at all? Mine put me on Enbrel and I went from being unable to walk without crutches and needing help just to go to the bathroom to being able to walk without a limp.

Also — did your MRAs show any labral tears? I had bilateral tears which was thought to be the cause of the pain but after two failed surgeries it’s not — but could be for you.

Now I am looking into Ehlers-Danlos syndrome with yet another specialist (a geneticist) because I have very hypermobile joints. I feel your pain, especially at our age. It may seem like you’ve tried all the meds but you have just begun, you may able to find a combination that works for you. I personally have been all the meds you listed and they all just felt like placeabos to me…abolutely no help.

Aug 26, 2011 · sacroiliitis in Bones, Joints & Muscles

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)

Aug 26, 2011 · ankylosing spondylitis in Spine Health

I’ve had chronic hip pain that took about 5 years to get diagnosed as ankylosing spondylitis. The only things that have really helped me are Enbrel injections and oxycodone. Unfortunately I am incredibly tolerant and dependent on oxycodone but it’s the only thing that touches the pain. I would just looking into something like Enbrel and having an MRI done of SI joints. My pain is still horrible and controls my life but before Enbrel, I could barely get around and at my best I was constantly on crutches.