Patient Comments: Hypermobility Syndrome - Cause

Question:

Please share the cause of your hypermobility syndrome. Submit Your Comment

Comment from: Janet, 45-54 Female (Patient) Published: July 02

I had two attempts for cystoscopy in ten days, and even with dilatation they could not do it. It was so painful during and after, I had tummy pains and backache. I had antibiotic injection as well which was horrible. They have suggested general anesthetic but I really do not know what to do.

Comment from: Lulu, 19-24 Female (Patient) Published: September 05

I was in a car accident two years ago that caused me to lose 60 lb. in 3 months, which is how I developed hypermobility syndrome which then led to scoliosis in my mid back.

Comment from: Stareagle, 55-64 Female (Patient) Published: July 31

I inherited my hypermobility syndrome.

Comment from: Sunshyne544 , 35-44 Female (Patient) Published: April 24

I’ve never been diagnosed with hypermobility syndrome but I had my first dislocation of my knee when I was in eighth grade. I have had three knee surgeries since then. My elbows dislocate and I just pop them back. I have sprained my left foot to the point where now I have to have tendon reconstruction surgery so that way it will quit rolling my other foot. At one time or another I think when I sprained it last may have broken one of my metatarsals and didn’t know it until nine months later. I got an x-ray and sure enough it was broken but it had healed back. I’ve always been super flexible everywhere, like I can sit on the floor and completely straighten my foot all the way down to the floor and touch my toes to the floor without bending my knee. But I’ve always had floating kneecaps so we’ll see what the doctor says this week.

Comment from: Unstoppable Mom, 7-12 Female (Caregiver) Published: November 20

My 12 year old daughter was recently diagnosed with acute hypermobility. She is in constant pain. I believe that she inherited the condition from me; although I was never diagnosed with it. My daughter has been suffering loose joints since she was 9, when her right shoulder popped out of place. I refuse to stop looking for a solution for her. She has missed school and has been in physical therapy for 4 years. Thank goodness we have good insurance.

Comment from: Sol, 55-64 Female (Patient) Published: June 19

I’m 62 and was diagnosed a year ago with hypermobility syndrome. My first incident was when I was about 6, was running and my ankle gave out and continued to. My elbows, fingers, thumbs, knees, ankles, and shoulders have it. My rheumatologist said on a scale of 1 to 9, I’m a ten. My oldest daughter is too, but hasn’t been officially diagnosed. I’m lucky and don’t suffer much pain.

Comment from: pugs1970, 35-44 Female (Caregiver) Published: September 26

I have been suffering from gout for 20 years, age 45 now. I’m a builder and for the first few years of my introduction into the world of pain I kept working, pulling myself up ladders with only one leg and crying a lot in silence. We Aussies are too tough to cry in public. Twenty years later I am stuck in bed with a right knee with its own heartbeat and built in heater, whoever thought even the slightest breeze or knock could bring this six foot ex-rugby player to whimper like a little flower!

Comment from: calla, 25-34 Female (Patient) Published: February 28

I was just diagnosed 6 months ago with hypermobility syndrome at the age of 30, when I went to the doctor with extreme hip pain. I cannot do any of the usual tests except the touch the floor test, but I can turn my legs from the hip so that my feet and knees face each other (inward), but a normal distance outward rotation. I also have a hitchhikers thumb on both hands 180 degree of motion on the thumb joint closest to the nail. I also have a slight sidewise wobble at the left knee and have sprained my ankle at least 5 times and had a mid-foot sprain.

Comment from: Itsmejenn, 25-34 Female (Patient) Published: October 18

I recently got diagnosed with Hypermobility Syndrome after a car accident. I was rear ended and the whiplash was so severe that my arm and back would go numb and it was a low speed collision! A year later, I am still in physical therapy doing core strengthening. I just turned 30 and have chronic pain. I always seemed to dislocate my hips and more recently one of my ribs became dislocated (I didn't even know that could happen!). So far I have no arthritis. My fingers lock into place and I remember my great grandmother's hands doing that as well. For ladies hormones and hypermobility don't work well together or so I've been told.

Comment from: Nussa, 55-64 Female (Patient) Published: May 15

I am a 55-year-old female who has had hypermobility syndrome since childhood. I recall my first real incident at age 12: I was playing tag with friends when I turned too quickly and my right knee popped out of joint. It hurt terribly. I hobbled on it for about two weeks because of the pain. Of course I was terrified it would happen again. I have never been very athletic, and because of what happened to my knee, I avoided sports of any kind after that. It happened to me again when I was in my early 30s. That time, I went to the hospital and had to use a brace and crutches for about a month. It took me a long time to regain the use of my knee because I was so afraid to step on it. I used it as little as possible, so, of course, my muscles atrophied. I exercised my leg after that, until I could walk without the crutches again. I was diagnosed with rheumatoid arthritis about seven years ago. This is when I was told about my loose joints. I asked my doctor if there was anything I could do about it, and he said no; as it was something I was born with. He told me to keep active. That's hard to do when you are always terrified that your next step could drop you to the floor. I can also tell when my knees are vulnerable. They have a stiff, inflamed feeling. I’m also starting to have trouble with my ankles. Sometimes I'll be getting up from my chair, and it's like my ankle isn't even there. It's very painful. I am also very limber. I sit on my legs, which the doctor says is not good. I can't sit down without putting one or both legs up under me. To be honest, it if weren't for that, my knees would stiffen up, and I'd never be able to move them. I was in the hospital overnight last fall. I couldn't get up and move around often. When it came time to go home, I could barely move my knees – they had stiffened up so badly. I honestly didn't know so many people had hypermobility. After reading about all the severe problems others have suffered, I feel grateful that I'm as well off as I am.

QUESTION

The term arthritis refers to stiffness in the joints. See Answer
Comment from: makingit, Published: June 06

I have hypermobility. Though before I was injured in the military I had only minor problems. I believe what helped me through childhood and early adulthood was that I stretched every day. I did dance and martial arts. Working with PT I've notice that the closer I can get back to my "natural" range the less pain I feel. But it's a slow process. I have to strengthen the muscles but still get them more flexible. I know the frustration of not having doctors listen or understand. Try stretching maybe even yoga if you can.

Comment from: mallissa cleal, 25-34 Female (Patient) Published: April 07

I have had hypermobility since I was 19 years old. I have 2 children, I am now 28 years old. I am double jointed, get a lot of back pain. I can only walk so far without hurting myself. I struggle through my daily life. But I still have not been diagnosed with hypermobility syndrome by the doctors.

Comment from: K., 45-54 Female (Patient) Published: August 09

I have been suffering with joint pain for quite a few years now. I was sent to a rheumatologist and diagnosed with hypermobility syndrome. I get a lot of pain in my wrists, knees, ankles, and shoulders. I am also starting to experience a lot of fatigue, or perhaps it is possibly a sign of poor sleep due to waking due to pain during the night. I also have an issue with my feet. Over the past few years I have had a lot of pain there too, the skin on my heels seems to be very saggy. The padding under the skin seems to have gone.

Comment from: Cheermomred, 45-54 Female (Patient) Published: December 15

I was recently diagnosed with Ehlers Danlos syndrome. I find it to be a very painful and so little known about it.

Comment from: arieljane, 13-18 Female (Patient) Published: March 15

I have been diagnosed with hypermobility because it caused my feet to create bunions. I’ve always been able to do the double-jointed stuff with my fingers. I love running, but can’t really do it anymore because every time I do, my knees or feet hurt. My hands also hurt a lot and I tend to drop things for no reason. My shoulders get dislocated and painful. How do you deal with the pain? I miss running like I used to, but every time it ends up hurting.

Comment from: Jonsie, 35-44 Female (Patient) Published: July 27

I have suffered with Hypermobility Syndrome since I was a child but it was only diagnosed last week. I have had numerous strains, sprains, ruptured tendons, tendonitis, bursitis, plantar fascitis, and associated problems including endometriosis, depression, anxiety, migraines, IBS and chronic sinusitis, not to mention the growing pains as a child! I remember telling a doctor when I was in my 20s that I wish someone would look at me as a whole and not individual ailments as I was sure that there was a connection. I now have early stage osteoarthritis in my knees and shoulder, which may not have happened if I had been diagnosed earlier.

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