Patient Comments: Hypermobility Syndrome - Symptoms

What were the symptoms of your hypermobility syndrome?

Comment from: Sue, 45-54 Female (Patient) Published: January 12

I am 49 years old and been "double jointed" all my life. My fingers could bend backwards 90 degrees and I can make my finger joints lock in weird positions. My wrist bone keeps popping out, but I can usually tell when it is about to and can sometimes prevent it. Within the last year my knee bones have been popping out, causing me to buckle over as I am walking. Doctors said it was arthritis, but I knew it wasn't. After popping out in the left knee, I was afraid to trust it so I started going to physio. The other knee went out while walking up the stairs and I went straight to my physiotherapist so she could diagnose it. As soon as she said my tendons are loose I knew they were popping out. I still do not trust myself on uneven ground but am learning to pay much more attention. I have also been having great pain in one foot and am wondering if that is what caused it.

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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.

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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.

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Comment from: monkey7, 13-18 Female (Patient) Published: August 08

I got diagnosed when i was a baby but know i suffer almost all the symptoms. I've had surgery due to it and I can't really exercise. I've been like it since was little, and it was just obvious because i had/have 95% of all of the problems, i think I'm like 113 years old because I've had plastic surgery 3 times and so on. I always get bugs from school and I am constantly ill. I try to be healthy but it isn't helping. I even used to do yoga with my mum since i was 1 yrs old, so i don't know much more.

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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.

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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.

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Hypermobility Syndrome - Cause Question: Please share the cause of your hypermobility syndrome.
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