Patient Comments: Hypermobility Syndrome - Symptoms

Question:What were the symptoms of your hypermobility syndrome?

Comment from: TJ214, 35-44 Female (Patient) Published: April 16

I read that (severe forms of) Hypermobility Syndrome have been reclassified as (mild forms of) Ehlers-Danlos Hypermobility Type. So if one was diagnosed with HMS, like me, then one has EDHS. I have other symptoms as well, like the mitral valve (prolapse); the blue tint in the sclera (eyes); atrophic scars; ganglions; chronic dislocations and sprains of ankles, knees, and jaw; intractable hip pain; and intractable joint pain. I don't have the skin involvement, although I have the atrophic scarring and I bruise easily. I also have chronic insomnia, and when the weather is bad, it's bad for me. I feel for everyone posting here, I could live with the joint locations and everything else, if only the pain wasn't there. It's hard, too.

Comment from: lmitch63, 45-54 Female (Patient) Published: November 21

I have been looking for an answer to my problems and I believe I have found it. I have always been able to bend my thumbs back to touch my forearms. A hand surgeon even took a video of it. As a baby, my parents said my feet were always in my mouth, which explains why I have to move a certain way to pop my hips, because they get very stiff. My knees have always bent backwards and now I have difficulty sitting for periods of time because of stiffness and pain. Also, my wrists are very hyper flexible and get very stiff and I have to shake them to pop the joints. My back is also very stiff and I have to touch the floor with my fingers to hear the popping in my spine.

Comment from: Holli, 25-34 Female (Patient) Published: November 03

My symptoms were hyper-extension of several joints. Also, I have pain in my ankles, knees, hips, fingers and shoulders. I can't sit or stand for too long or my hips will pop when I get back up and sometimes my ankles will buckle under my weight. In the morning, if I tossed and turned or laid on my side, my shoulders will be in pain and I have to pop them to stop it. Every time something like this happens, I have inflamed joints. I have back problems. I was 22 when I was diagnosed. They sent me home with pills and basically told me I'd be on them for the rest of my life. I refuse to accept that and live my life everyday fighting it.

Comment from: tina, 55-64 Female (Caregiver) Published: April 02

I am in my 60s and this is the first time anyone has been able to diagnose the condition. I can still do leg splits, which doesn't hurt, nor does putting my head to my knees in a sitting position on the floor with my legs outstretched. It is a relief that all of my joint pain, labral left hip repair, fibromyalgia, thin skin, spontaneous-ruptured foot tendons, and fractures all fall under this one syndrome. I have been exercising for more than 50 years, and my physician said to keep doing what I am doing, although I no longer do weightlifting. My current exercise regime is to do cardio (i.e. elliptical), weights, stretching walking, meditation and yoga – all three times per week.

Comment from: BalletGirl94, 13-18 Female (Patient) Published: January 03

My knees are ridiculously hyperextended (as in curved backwards). I can lock my fingers, bring my thumb all the way to my wrist, bend my fingers 90 degrees backwards, etc. I'm a ballet dancer, so the extra flexibility has always been an advantage. For example: I can bring my head between my knees easily. However, I do get injuries a lot, especially sprains in my knees and ankles. I hear clicking almost every time I move a muscle. Overall it's not always great, especially with the injuries, but it's doable.

Comment from: MoaningMarianna, 13-18 Female (Patient) Published: November 19

I am a 16 year old girl. I was diagnosed with hypermobility syndrome two years ago, but have always had regular hospital trips because of dislocated knees, pulled elbows, twisted ankles, sprained wrists, the whole works. Since being diagnosed by my physio therapist I have been referred to specialists in London because simple exercises to strengthen the ligaments round my left shoulder have made my shoulder dislocate before I can really get to work on getting myself strong. In the past year my shoulder has dislocated without cause in various lessons at school and randomly at home. The specialist referred me back to physio (pointlessly) so I'm starting to feel as if nobody is taking me seriously, I genuinely find it difficult to get through a day at school, my attendance is 75 percent at school because of all the hospital appointments and what not.

Comment from: smalldafty, 19-24 Female (Patient) Published: October 27

I was always sore, sometimes I couldn't even walk up the stairs at work (I'm only 21). It was causing me great deal of stress and felt much older and weaker! My back often got so sore that I could hardly move.

Comment from: tricky, 35-44 Female (Patient) Published: July 30

Both myself and my 15 year old daughter have hypermobility. As a result I have a ruptured ACL ligament in my right knee and my left is very stretched. I always guard my knees and very cautious of where I walk. My daughter suffers from hip and knee pain that restricts her playing sports, to my dismay my son has recently been suffering severe foot pain. I have read the articles here to see this may be as a result of hypermobility also.


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