Patient Comments: Hypermobility Syndrome - Symptoms

Question:What were the symptoms of your hypermobility syndrome?

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.

Comment from: 19-24 Female (Patient) Published: November 06

I was told that I'm hypermobile when I was 21 by a physical therapist after a judo injury (torn rotator cuff, winging scapula, and some nerve damage - all from an accidental knee to a nerve along my ribcage). I wasn't diagnosed as a child because I've always been a tall and heavy girl, so my doctor would say that while I'm surprisingly flexible for my size, any joint pain or dysfunction was due to my weight. (Never mind that most of my symptoms presented themselves before I was even 10 years old). In addition to the easy judo injury, which still hasn't fully healed after several years, I've bruised bones (three in my wrist a few years ago, also not yet healed), had more sprains and twisted ankles than I care to remember, and frequently have things move ever-so-slightly out of alignment. On an average day, I 'pop' my shoulder back into place several times, 'roll-out'/rotate/stretch my wrists and ankles, and check the small bones in my hands and feet to make sure that they didn't dislocate while I was sleeping (which has happened a couple of times - apparently I thrash around). When I told my sister (who is very flexible, but apparently not hypermobile) that my hips and knees are sometimes too 'loose,' she told me that she didn't see how it was possible for them to be too loose. I tried to explain how it can make even such simple activities as walking difficult, especially when they loosen up suddenly, rather than having a day when I just woke up to them like that.

Comment from: Dani, 35-44 Female (Patient) Published: November 06

I have always been a klutz and have always twisted my ankles and done something to my knees. I have a matching set of air casts for my ankles as well as a set of custom braces for my wrists due to repetitive injury strain. I have also had multiple issues with my knees causing pain and my knee caps moving out of alignment to the outer part of my leg. The last specialist I saw told me "I know something is wrong with your knee, but can't figure out what is wrong with it." It was nice to have a doctor tell me it wasn't a muscle imbalance or that I needed another round of physical therapy. I was injured at work and pulled the tendons in my lower back. My Physical Therapist told me I had "loose tendons" and that was why I kept injuring myself.

Comment from: MomofNoah, 3-6 Male (Caregiver) Published: May 09

My 3-year-old son was diagnosed with hypermobility a couple months ago. He was having difficulty walking and running so he was referred to a physiatrist at a local children's hospital. The doctor said that not only were his feet very hyponated (rolled in) but he was extremely flexible, or hypermobile. He showed us by folding our son's hand under toward his arm and showing how his fingers easily touched his forearm. He said to avoid heavy contact sports or anything hard on joints like gymnastics as it could easily hurt his joints. Tumbling class was fine, just nothing high impact. He also warned us that our son may prove to be uncoordinated because of this but it's not always a guarantee.

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.

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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