Patient Comments: Hypermobility Syndrome - Symptoms

What were the symptoms of your hypermobility syndrome?

Comment from: JoJo, Female (Patient) Published: April 26

As a child I was always spraining my ankles, and my knees constantly hurt. I could lick my nose, put my toes in my mouth, bend my thumb back to my forearm, and straighten my fingers so that they bend backwards. Very easily touch the floor flat handed, without bending my knees. Roll my ankles half way around with turning my knees. Playing high school sports in the 1970s I had both ankles and one knee taped all throughout 5 years of sporting events. In the early 1980s my orthopedic doctor said I had loose joints. I had my first ankle reconstruction surgery in 1983. That ankle needs to be done again. My left ankle has been reconstructed twice and needs a 3rd surgery. My knee caps float, I have torn my ACL (anterior cruciate ligament) several times not knowing I had done that twice as I was so used to knee pain. I have had Maquet procedure on the knee until eventually when I will need replacement. In 2009 my ankle surgeon advised in the office notes that I have hypermobility syndrome. Recently had elbow surgery for lateral epicondylitis and possibly will need another surgery lower down the forearm for muscle squashing the nerves and tendons. Walking on flat surfaces I can easily sprain an ankle where there are cracks in sidewalks. I have just always taped my knees and ankles and lived with the pain. Nearing the late 50s I just wish I was told this in high school.

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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: 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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Hypermobility Syndrome - Cause Question: Please share the cause of your hypermobility syndrome.
Hypermobility Syndrome - Treatment Question: What treatment have you received for hypermobility syndrome?

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