Patient Comments: Hypermobility Syndrome - Symptoms

What were the symptoms of your hypermobility syndrome?

Comment from: Confused, 19-24 Female (Patient) Published: July 21

I'm 19 years old and I was just diagnosed with joint hypermobility. I have been a dancer all my life but at around 14 I started suffering with extreme joint pains in almost all of my joints. I stopped dancing and saw a doctor. He sent me to a physiotherapist and they just said I had pinched nerves. It has been 5 years since then and I have been to many different doctors with all saying I had arthritis. I saw a rheumatologist who took one look at my joints and then told me I had joint hypermobility. Along with the hypermobility I suffer with extreme pain and often have dislocated joints and sprains. Now I just need to learn how to manage the syndrome.

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Comment from: 55-64 Female (Patient) Published: March 02

This article describes my personal conditions to a tee. However, what is missing is how all the dance, sports, yoga instructors in my life knew nothing of my hypermobility syndrome until I came to study yoga as a mature adult, where they suggest alternative instructions for every yoga position for people with hypermobility; essentially to think of pulling in joints rather than stretching, as a means of achieving correct postures.

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Comment from: 35-44 Female (Patient) Published: January 30

I've always known I was hypermobile, just didn't know it was a syndrome until now, and I'm 41. I've had 2 labral repairs in hips and one in shoulder, as well as a shoulder fixed for multi directional instability (capsule was loose due to recurrent subluxations). Also, my SI (sacroiliac) joint has been basically in but mostly out for about 10 years now, and my L4-L5 disc has torn twice. Now finally I am in physiotherapy with someone who has hypermobility syndrome and specializes in it. She is teaching me all kinds of things. I feel so much better after only a couple of weeks. She's given me stability exercises such as kneeling on a physiotherapy ball for a minute, and elliptical with no arms to increase core stability. Lots of stability exercises and SI mobilizations I can't explain here. She also told me no stationary bike for now because the seat is not big enough and SI tends to slip. She told me all my gymnastics and dance growing up was bad for me. And no more stretching, no yoga and no Pilates. I've had multiple doctors and therapists tell me no yoga and no stretching, but Pilates is great for me. Apparently not.

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Comment from: flexible but hurting, 45-54 Female (Patient) Published: July 17

I always thought my chronic joint pain from childhood and herniated discs (3 spinal surgeries already by 45) were due to childhood obesity and carrying too much weight. One of my surgeons said I had joint subluxation (I could never play the piano like my older siblings due to 'Gumby-type' fingers. Parents were very old when I was born too) and so subluxation and being double-jointed/hypermobile makes sense. Within the last two months, my right hand's thumb joint (1st (MCP) metacarpophalangeal) has been acutely painful and today the flexor tendon is not passing through the sheath. Orthopedic surgeon has me scheduled for 'trigger finger' surgery for 8/1. The MRI reveals acute sclerosis, arthritis and osteophytes around that 'dislocated' MCP joint suggesting that the joint movement has irritated the tendon to be highly inflamed and edematous. The hand surgeon wants to cut the sheath to allow the tendon to pass. I shared with him that my left shoulder has the exact same hypermobility syndrome as well as my left great toe joints, both hips and most of my spine... chronic pain which I have simply tolerated. Now that I can't function well or write due to extreme pain (since I am a righty) I feel I have no option but surgery.

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Comment from: VoyagerSeath, 75 or over Female (Patient) Published: June 13

I have been hypermobile all my life. First I had dislocation in small bones in left foot; then many sprains, etc., and frequent muscle spasms in different areas. Three years ago I had left patella dislocation, 10 years ago I began to have a very loose right hip, which is now a permanent condition. I have always kept moving, but normal exercises and physiotherapy are dangerous for me. I am now aged 70 plus. My main problem is the very frequent episodes of overall muscle weakness, joint pain, and fibromyalgia type pain. Now I am finding it difficult to walk without tri-walker support; in the past muscle weakness might last 1/2 days whereas now it seems permanent. There are many other little symptoms like poor digestion, easy bruising and last but not least, incredible speedy labor with each birth - barely making it to hospital in time. First diagnosis was from a German physiotherapist in the mid-90s. I do remember my mother suffering almost the same symptoms and pain with many stints of bed-rest without any medical explanation despite hospital intervention. My sister was frequently immobilized with ankle and wrist sprains. One of my sons has the mitral valve prolapse.

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