What is Hypermobile Syndrome
Hypermobility syndrome (known by a variety of other names, including Benign Joint Hypermobility Syndrome and HMS) is generally considered to comprise hypermobility together with ot...
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What does HMS feel like for you?
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I've never known anyone else with HMS and I am wondering if my experiences are similar to others. It is scary and sometimes nauseating to talk/think about but I really feel like I need to know if others are going through the same things I am.
When I was a baby my elbows would often dislocate and stay dislocated until the doctor could put them back in place. I cannot remember this and only know what my parents have told me. When I was a teen, my knees started dislocating. The first time this happened it was extremely painful but it went back into place as soon as it dislocated. Over the years this has begun to happen more and more frequently. I am always afraid that it might stay dislocated and I cannot imagine the pain of that. A typical dislocation will send me into shock and I typically spend 1-2 months on crutches. Five months ago I had my first baby and since I got pregnant, my knees are in a constant state of weakness (even after the birth.) Now days I am scared to even walk around because I think one or both knees might dislocate at any time and the pain of that is unbearable. I do not know how I would take care of my baby if I could not walk. I've been reading up on other people's posts on this and other websites and I am realizing I actually have it pretty 'easy'. I've read that some people who suffer from HMS have shoulders or other joints that are pretty much constantly dislocated. How is it possible to live like this? My dislocations cause my to writhe and scream in pain. I am only starting to realize the full extent of this problem with constant (but mild as long as my joints are not dislocated) knee pain and a fear of movement. What is it like for you when your HMS 'flares up?' How does it feel? Is it getting worse the older you get or better? How do you stay positive and get over the fear? How do you stay in shape? Please share your experiences. We can all help each other! Posted on 05/18/09, 01:05 pm |
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i was just recently diagnosed. i know i have a lot of joint and muscle pain all over. i can feel my knees start to dislocate, but they havent yet. my ribs and jaw do dislocate fairly often, but they are easy to manipulate back. i am in a constant state of pain. i have 2 children and have gotten MUCH worse with each one and was advised not to have anymore. i also have numbness, tingling and a feeling like bugs are walking over my arms and legs. i have lost a lot of the ability in my hands and feet too. 
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i first dislocated my left knee when i was 14, which was weird cos its always the right knee i had problems with. it used to constantly lock and my kneecap felt like it would slid off. I have had re-aligment surgery to both of my knees now and they havent dislocated again in two years. Now i just get the odd pains, i get a shooting pain in my right leg that goes from my knee to my hip and down to my toes.
Im getting increasing shoulder problems, now my right shoulder is in agony alot but i wont go back to physio cos it was crap for me. My doctor is hoping now im 18 my joints have strenthened up and got a little stiffer. In my right knee my kneecap is still alittle off so i was told if anything dislocates it will be my kneecap, i get the feeling of air traped under my knee, it cracks alot and grinds. I dotn have much cartlidge left so this probably is causing most the pain. Usualy after i pop my leg up and put some ibruofen gel onto my knee it will be fine in a few hours.
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p.s when i dislocated my left knee it went right in, but with my right knee it was out 3 hours til i could get an ambulance to get me to hospital...extremtly painful and apparently the reason my cartilidge worn down so much. My muscles started to twich alot and this made the pain 100 times worst and every single little movement hurt so bad.When the doctor pulled it hurt for a few mins, i knocked myself out taking to much gas and air and had to get morphine..i couldnt imagine getting it put back into place without!
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What is IB Proufen gel? that sounds like good stuff...
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its just a gel that contains ibruofen..you can get it from your pharmacy, it doesnt cost much. It can be used on joint and muscle pain, my granny uses it for her arthritis
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