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November 19, 2018
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Answer Summary

Members overwhelmingly confirmed experiencing joint slipping, especially in ankles, knees, hips, and shoulders, with many describing it as... Read more

Members overwhelmingly confirmed experiencing joint slipping, especially in ankles, knees, hips, and shoulders, with many describing it as joints giving out or turning inward. Several members suggested exploring hypermobility or Ehlers-Danlos Syndrome, a genetic condition affecting collagen that can cause joint instability and subluxation, and recommended asking for a referral to a genetic specialist or pursuing physical therapy to strengthen stabilizing muscles. A recurring theme was frustration with the healthcare system, particularly how many rheumatologists in the US diagnose fibromyalgia but refuse to treat it, leaving patients stuck between specialists with no clear path forward.

A MyFibroTeam Member

I have fibro but was also diagnosed last April with Ehlers Danlos Syndrome. One of the signs is hypermobility and subluxation or dislocation and many other issues. Basically it's a defect in our collagen. Collagen is the glue that holds our joints together. You should ask a referral to a genetic doctor. Although eds and fibro are similar in symptoms there are many things to watch for and avoid with eds. worth investigating.

November 22, 2018
A MyFibroTeam Member

Yep. US you get referred back to GP. This is totally neurological but a neurologist wont treat it nor will a rheumy from what ive experienced. And yes, i roll my ankles.

November 19, 2018
A MyFibroTeam Member

Yes it sounds like hypermobity. Just a posh word for double jointed. The only treatment really is controlled exersise like palates not high impact ones like zumba though. It's a pain when it's in your ankles as you slip over more as they turn in.

November 19, 2018
A MyFibroTeam Member

I have hyper mobile joints and snapping hip syndrome. I have to do PT for it to keep stability because my ligaments and muscles need to learn to work together again. I also can’t do strenuous exercise anymore. If I’m on my feet a lot or in stressful situations it can act up.

November 19, 2018
A MyFibroTeam Member

Yea I get that all the time, but more in my knees, shoulder and hips. My ankles turn inwards though. Its really uncomfortable but not really painful unless it gets stuck. We don't know why as of yet for me. Are you double jointed? If so try asking about elhers danlos syndrome and search it up.

November 19, 2018

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