Patient Comments: Hypermobility Syndrome - Symptoms

What were the symptoms of your hypermobility syndrome?

Comment from: LyndaB, 45-54 Female (Patient) Published: January 03

Joint hypermobility syndrome is much more than just loose joints. The flexibility extends not only to the ligaments and tendons, but also to the muscles (which includes the heart). Side effects include feeling tired all the time because of low blood pressure, susceptibility to frostbite of extremities in cold weather (due to the gaps in joints), heavy periods, migraines, and low blood pressure, so low that your heart races if you stand up too quickly because you'd faint otherwise, to name a few. I've had it all my life, and it has not gotten less with age, it's gotten worse, I am still as flexible as I ever was, and the side effects are taking a greater toll the older I get. This can be a very serious condition for some people who have extreme flexibility. Doctors need to be aware of all the other side effects that occur with this syndrome, so they don't misdiagnose some of the side effects as vitamin deficiencies, hormones, or some other incorrect assessment. Unfortunately, very little research has been conducted on this topic.

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Comment from: Female (Patient) Published: November 28

I am 18 years old and was diagnosed with joint hypermobility syndrome at the age of 13. I suffer from shoulder dislocations on an hourly/daily basis and quite often end up in hospital to reduce my shoulder. I have constant pain in all of my joints. I haven't been able to take part in sports for years and have had to drop out of college due to the frequent dislocations. I have been doing physiotherapy for the best part of 5 years and am now just waiting to 'grow' out of my condition. I have given up trying to cure my hypermobility and just focus on my quality of life.

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Comment from: Flexible, 55-64 Female (Patient) Published: July 29

I have always been very flexible and can do all the 'tricks' but have not suffered with any dislocations. I have always been sporty and continued with gym after my school years. I stopped doing heavy squats after my knee tendons ruptured, I always have shoulder injuries and currently I am dealing with lateral epicondylitis; I will have ultrasound next week. A few things I have noticed that are possibly related to hyper mobility syndrome: nails and hair grow very fast but nails are thin and bend like plastic. No episiotomy at both child births (there's a plus for you) and another. I am never constipated although stools can be thicker than average (too much information), IBS (irritable bowel syndrome) from too much fiber, and hands often ache. My children are also flexible and one has scoliosis. Not for the faint hearted. My heart goes out to all those with worse symptoms.

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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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