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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
Comment from: Baltimore gal, 25-34 Female (Patient) Published: November 27

I was recently diagnosed with hypermobility. I can do all of the parlor tricks associated with it. What I didn't know is that my kneecaps do not move because of this. The ligaments and muscles run diagonally across the knee. I also have ulnar nerve entrapment on both arms. I tried 2 different surgeries on left arm with no success. All muscles are atrophied beyond repair - palm is flat, missing muscle in between thumb and forefinger. Right hand is now following the same downward spiral. The orthopedic doctor said that this is caused by the hyperextension and that the impingement is inevitable and unlikely to respond to therapy or surgery. Not looking forward to losing right hand as well, but it is deteriorating fast. I am not getting surgery for this one - thousands of dollars wasted on a condition that cannot be fixed. I might as well avoid the long scar down my arm this time.

Was this comment helpful?Yes

Patient Comments

Viewers share their comments

Hypermobility Syndrome - Cause Question: Please share the cause of your hypermobility syndrome.
Hypermobility Syndrome - Treatment Question: How has your hypermobility syndrome been treated?

Patient Comments are not a substitute for professional medical advice, diagnosis, or treatment. Never delay or disregard seeking professional medical advice from your physician or other qualified health provider because of something you have read on MedicineNet. The opinions expressed in the comments section are of the author and the author alone. MedicineNet does not endorse any specific product, service or treatment.

Alert If you think you have a medical emergency, call your doctor or 911 immediately.

Report Problems to the Food and Drug Administration

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.