hypermobility syndrome

CoderGal

She had terrible pains they said were growing pains also. That is common. Standing hurt her knees, it was all over. No swelling or redness in the joints. Pain in the muscles. She had very tight hamstrings. I would not have thought about the HMS and didn't know if it fit because of that. I remember one day she played in the yard a bit. We were up pass midnight with her crying and saying I knew I shouldn't play.

Wow that sounded so much like me. Mom use to constantly be up late putting hot water bottles vicks smelling stuff and the like on my knees with me crying in pain for such a long time. I remember being young and the doctor telling mom I was probably over exaggerating and that it was growing pains. You know the test where you can touch your hands off the floor? I can touch my elbows. People wouldn't stretch me when I was in dance because they were afraid they'd 'break' me because I could go significantly farther then everyone. I was reading wiki on EDS and I bruise really easy and am practically see-threw and have all the joint pain. And I definitely have muscle weakness I can barely lift my hair dryer long enough to dry my hair, but I think that's my own fault lol. I'm pretty sure I've sprained tore twisted and broke things in my body more then anyone i know.

At the same time though, I don't think I'm over flexible anywhere else (fingers elbows etc) and show other symptoms. Who knows, maybe I'm just weird.

RedHeadChick

Congrats on making the decision to take care of yourself! You Rock!

JoyfullMovement

Terri, I am the same, very flexible hips and lower body but not the hands. It can happen like that where ou are not bendy in every joint area. Well I hope the awareness may help if ou need it or have issues come up. When i google now there seems to be more info out there than just three years ago. Good luck!

hayley0181

Hi, I'm also hypoermobile. Mine mainly gives me pain in my hands and feet. It'd be great to have support from simialr people. I also find that strength training really helps with pain and is great for stabilsing unstable joints

mjjnbla

To my new beautiful young friends. I am 56 years old now. I was always very flexible, could put both legs behind neck, back bends, any type pretzel shape you wanted I could do. Many family members are the same. We all have what we call our trick knee, just quits on you! I had horrible growing pains too, mom would put me in the tub in the middle of the night when I couldn't sleep. I was a competitive swimmer, diver and great at pretty much all sports. My pain started in 10th grade whenever I sewed, typed, or read I would get a hot tingling spot on my left scapula. When I was in my twenties, I had costochondritis a few times. I had severe pain in my hands, it hurt to carry even a piece of paper, it felt like my fingers would just pull off. I was playing guitar running a marathon, cycling and doing masters swim, training to be a hairdresser and working as a clerk - typing and using a computer device called a light pen (antique). One day I pushed myself up from the floor with my right hand and thought I had broken or sprained by thumb. The pain was so intense I could not hold a sheet of paper between my thumb and index finger. I went to see a hand surgeon at the hospital where I worked and he did x-rays of both hands (for comparison). He diagnosed me with "severe arthritis". He said he had never seen anything like it except on a 60 year old lady. After this I went to a Rheumatologist who did the Beighton measurements and he said I had "lax joints" he said being a hairdresser was out of the question (I had just finished the training). I gave up the guitar, hairdressing and running. My best swim stroke was always Butterfly, had to give that one up because of neck pain. I got married and had children and when my first baby was about 20# I had horrible pain in my neck. As a stay at home mom I was able to exercise daily and as long as I was careful I had no problems. My neck continued to hurt often, sometimes my husband would have to help me out of bed because I just could not get up. When my second child was 20# my neck was so severe I had to go to a Dr. I had x-rays of my neck and again severe 80 year old type arthritis was the diagnosis. I again saw a Rheum who again did the Beighton and said I had Hypermobility. I got better and just lived with the pain for many years untill now. I still have neck pain every day of my life. Now I also have shoulder problems and the TMJ I used to put up with is more bothersome. I have been wearing a splint for my right thumb for 18 mos or so, and it is just worse and worse. I am seeing a new Rheum because the last one would not give me pain meds. I do not want narcotic, I just want Celebrex because the Ibuprofen is killing my stomach. Please pray that this lady will help me. I need help deciding if surgery is what I should do... I also have orthostatic hypotension, aortic insufficiency, plantar fascitis, and widening scars with moloscoid formation, dental crowding (braces on now!),Chiari I, Migraine and I don't know if this is EDS but I also have optic disc cupping. Since I have been so injury prone in the last 3 years I have put on weight. I have gained 20 #. I eat because I am so frustrated cause I can't do cleaning and other regular things around the house. My husband is an angel and does anything needed, but I want to do things myself. I need to lose the weight before I become more unable to exercise... I don't want to depress you guys, I want you to know that you have to seriously protect your joints!

JoyfullMovement

Dear mjjnbla,
I am so sorry to hear of all your trials. It just tears at my heart to know you are going through so much. Could you sarch out a specialist in HMS before having any surgery. With such a big decision and your life so overtaken by these problems, it would even be worth travel if possible for you. I don't know what surgery you are considering but if they don't understand fully what is causing your problems, can you be sure the surgery will help? Like if the problem is really a genitic glitch in your collegen throughout your body, will that particular surgery do the trick? I am sorry. I don't mean to be negative at all, just hoping you have alll the right answers for your decision. Please let us know how you are doing and I/we are here if you need an ear. My prayers are with you!

mjjnbla

JoyfulMoveme,
Thanks for your kind words. I have seen a Geneticist and been given a diagnosis of EDS HMS. The surgery is for my thumb. It will not cure the EDS HMS, what it will do is freeze the one joint at the base of the thumb so that it can no longer move too much. The surgery will decrease my pain, but it will also decrease my grip strength. There is no other choice really at this point. I am in so much pain I have to do something. I and my hand surgeon know what is causing the problem and this is the only solution at this point. My warning to all of you is, get Silver Ring Splints before you end up like me! You can google the co and see what it is. I think if I had the splints in my 20's I could have prevented so much dammage to my joint. The arthritis I have is from the extra movement wearing away the cartillage between the bones. Like on a leg of chicken there is a little layer of padding (cartillage) between the bones. The moving outside the range the cartillage is designed to protect is what has done the dammage. This extra movement is caused by the EDS HMS, the bones are not held in position tight enough because the tendons and ligaments are weak. This is happening in every joint of my body, including my neck.

JoyfullMovement

Oh no! It just isn't right for someone to have to endure so much. I hope the surgery will bring you relief!

CoderGal

Wow Terri, it sure sounds like you may have the HMS. THE Physical therapist diagnosis it more than doctors. There is a good site that answers a lot of questions you have. I will return with the site link.
How we knew something was wrong? My daughter went through a few periods when very young with pain and stiffness in fingers and toe joints. She was so young at this time the doctors listened and were suspecting the big juvenile A. It passed and all was forgotten. She was active, fun loving until around seven or eight. She got where any activity caused major pain. She began to avoid everything because she knew the price she would pay. She had terrible pains they said were growing pains also. That is common. Standing hurt her knees, it was all over. No swelling or redness in the joints. Pain in the muscles. She had very tight hamstrings. I would not have thought about the HMS and didn't know if it fit because of that. I remember one day she played in the yard a bit. We were up pass midnight with her crying and saying I knew I shouldn't play. It was a horrible three or four years. She was depressed and I couldn't figure out what to do for her. I had many of her same symptoms when young but not as severe. I was investigating everywhere trying to find an answer. Sure enough the trigger spots for Fibro would send her out of the chair when I touched them. I never mentioned the Fibro word to her or anyone though. Many children with Fibro also have HMS and I believe adults also.
A friend running an errand with us realized the symptoms sounded just like her flute student's. She connected us who led us to a physical therapist and the diagnosis. We then found out we had other related issues, TMJ, stomach issues, lung issues, etc. the severity can vary from person to person. I am sorry to say so much about this condition here but the pain families go through from not knowing, the lack of belief, etc, can be tremendous. With the Fibro HMS connection, I just knew someone here may benefit from the knowledge it exists and the possibilities.
Good luck Terri. I will follow up with some links for you. Ii am happy to share anytime if you have a need.

Thanks for sharing!

CoderGal

To my new beautiful young friends. I am 56 years old now. I was always very flexible, could put both legs behind neck, back bends, any type pretzel shape you wanted I could do. Many family members are the same. We all have what we call our trick knee, just quits on you! I had horrible growing pains too, mom would put me in the tub in the middle of the night when I couldn't sleep. I was a competitive swimmer, diver and great at pretty much all sports. My pain started in 10th grade whenever I sewed, typed, or read I would get a hot tingling spot on my left scapula. When I was in my twenties, I had costochondritis a few times. I had severe pain in my hands, it hurt to carry even a piece of paper, it felt like my fingers would just pull off. I was playing guitar running a marathon, cycling and doing masters swim, training to be a hairdresser and working as a clerk - typing and using a computer device called a light pen (antique). One day I pushed myself up from the floor with my right hand and thought I had broken or sprained by thumb. The pain was so intense I could not hold a sheet of paper between my thumb and index finger. I went to see a hand surgeon at the hospital where I worked and he did x-rays of both hands (for comparison). He diagnosed me with "severe arthritis". He said he had never seen anything like it except on a 60 year old lady. After this I went to a Rheumatologist who did the Beighton measurements and he said I had "lax joints" he said being a hairdresser was out of the question (I had just finished the training). I gave up the guitar, hairdressing and running. My best swim stroke was always Butterfly, had to give that one up because of neck pain. I got married and had children and when my first baby was about 20# I had horrible pain in my neck. As a stay at home mom I was able to exercise daily and as long as I was careful I had no problems. My neck continued to hurt often, sometimes my husband would have to help me out of bed because I just could not get up. When my second child was 20# my neck was so severe I had to go to a Dr. I had x-rays of my neck and again severe 80 year old type arthritis was the diagnosis. I again saw a Rheum who again did the Beighton and said I had Hypermobility. I got better and just lived with the pain for many years untill now. I still have neck pain every day of my life. Now I also have shoulder problems and the TMJ I used to put up with is more bothersome. I have been wearing a splint for my right thumb for 18 mos or so, and it is just worse and worse. I am seeing a new Rheum because the last one would not give me pain meds. I do not want narcotic, I just want Celebrex because the Ibuprofen is killing my stomach. Please pray that this lady will help me. I need help deciding if surgery is what I should do... I also have orthostatic hypotension, aortic insufficiency, plantar fascitis, and widening scars with moloscoid formation, dental crowding (braces on now!),Chiari I, Migraine and I don't know if this is EDS but I also have optic disc cupping. Since I have been so injury prone in the last 3 years I have put on weight. I have gained 20 #. I eat because I am so frustrated cause I can't do cleaning and other regular things around the house. My husband is an angel and does anything needed, but I want to do things myself. I need to lose the weight before I become more unable to exercise... I don't want to depress you guys, I want you to know that you have to seriously protect your joints!

I also have tmj...what a (#) pain that can be. I read your post and was like number sign? Took me a few number signs to get pound...mine stands for sharp (C# pain).

Anyway it's good to hear what other people are going through as I know what to look out for. I wish I could pad my joints like a over protective mom pads her children lol.

gazz777

Hi all,

Very informative.

I'm a guy that others seem surprised how bendy I am - to me it's normal.

In Australia it seems IMPOSSIBLE to get formal diagnosis beyond BJHS (benign joint hypermobility). Benign, yeah right !

I was never sporty and always fat until last year - lost 70-80lbs.

Now my health in some respects better, in many respects worse. In many cases, to outside observers ... I still seem the same but my point of view is moving.

I do Les Mills Body Balance and am working on my core and overall building up where I can.

My main goal now is an attempt at being 'good looking' on the outside and a better person on the inside.

Sleep is stuffed up, depressed a lot of the time, poor self-image.

I feel very alone in the world, yet being one-of-a-kind can do that lol, so I seek hypermobile friends. As well as 'normal' folk who understand and support.

gazz777au

BJHS here.

Inlet

A sweet friend of mine from high school has had to cope with severe EDS for years now.
My heart goes out to all of you.

mjjnbla

Dear Gazz74,
I was first diagnosed w/ arthritis in my hands in 1980s, but I already was living with neck pain, costochondritis and TMJ. That rheum did the Beighton measurements, but he did not tell me that was what he was doing or what it was called. He told me I had "lax" joints and that I should not do repetitive tasks.The first time I heard the word "hyperbobility" was from rheum #2 in Sydney. It was 1995 and HMS was not yet considered to be a form of EDS. I can't remember the Doctor's name, again the measurements were done and he said I was "hypermobile" in every joint he tested. He didn't tell me that was my diagnosis. It was just last year when I again went to a new rheum (#3 who diagnosed me with depression lol) that I came home and googled hypermobility. Once I read the discription I knew it was me! I then made an appointment with a geneticist and she gave me a diagnosis. Now rheum #4 seems to believe me! She prescribed Vimovo for the pain and I feel so much better! I am going back with my again normal blood test results for a follow up. She said she will work with me to decide if I need surgery at this time. I know it is frustrating when you don't get a firm diagnosis. I would recommend writing down everything all your symptoms, and those of family members. Then get copies of all of your tests, blood, xray, Beighton whatever you have had and go to a geneticist. There is no blood test for HMS, but via your information and examination you can be diagnosed. Where in OZ do you live? We lived in Sydney for a year. If I had not been laid-up with HMS it would have been a perfect experience! We love Australia!

CoderGal

Anyone reading the coconut oil and vinegar thread? It seems to be helping a lot of people with joint pain.

kitkatkmt

Hello all, would love to have some hypermobile friends, as I am as well. Helps to have people understand what you're going through...

boppinbadger

I'm hypermobile too (and am typing this with both my wrists bound!). I was first diagnosed when I was 17, after months of not being able to even get up or dress myself due to back pain. I had always suffered with various aches and pains in my knees or hands as a child but, as they tend to be, they were put down to growing pains.

One thing that I haven't seen anyone mention is where they are hypermobile? Being hypermobile doesn't mean all your joints necessarily are hyper, you can get it in just one or two parts of your body. Unfortunately when I went to see the specialist in london for diagnosis I passed the test for hypermobility in all joints except my elbows (whoo hoo - one part of me is normal!!). I also tend to be worse in the right side of my body compared to my left, and the pains tend to happen more on that side of me as a result. Primarily my pain is in my lower back which aches on a regular occurance, although I'm told that is more from my hips being out of place which cause pain in my back rather than the pain coming direct from my spine... never quite understood that one but I'm sure the docs know what they are talking about. Then the rest are just as I injure myself overdoing things or just randomly. The one I hate the most is my jaw which I have to go to hospital to have them click back in, luckily that hasn't happened in a while!

Now at 31 I still get bad days, especially after prolonged periods of pain when you just can't get mind over matter any more and it all gets too much to cope with. But over all I'm used to it, I enjoy life, I dance 2-3 times a week at least (which has helped my fitness greatly), and walk the dog every morning no matter how much pain I'm in when I wake up - I often find that fighting through the first 10-15 minutes means everything starts to ease up a bit. I'm lucky to have understanding doctors who have no quams about giving me repeat prescriptions of strong painkillers as they know I'm not going to be taking them unless I really feel I can't cope without them (maybe 2-3 days a month). Anyway, I've rambled on for AGES, sorry about that! If anyone wants to add me to have a HMS friend, feel free

kitkatkmt

As far as I can tell, I'm hypermobile everywhere... knees, hands, wrists, fingers, elbows, ankles, etc. I wasn't diagnosed until I was 26 or 27 (can't remember for sure, though I know it was recent), but knew something wasn't quite right when nobody believed that I was constantly in pain. Ah well, now that I have an answer, it's much better.

I want to be a runner. Not sure if it's the best idea, but I've always wanted to. My physical therapist, when I asked his opinion, told me in no uncertain terms that I'm crazy. His exact words: ARE YOU CRAZY? I know my limitations, so I'm going to VERY slowly work my way up to it; if I can't, I can't, but I'll at least know I have tried.

I have the same issue with my lower back - I know my hips are NEVER where they're supposed to be, and that will sometimes throw off my knees as well, in addition to my back. Annoying.

It's rainy and humid today - as much as I hate the winter, I hate the summer more - the humidity makes everything worse. Today is going to be a bad day. The pain has already settled into my joints, and the last thing I want to do is work. I'm here though, so it will be interesting. This is also going to be the first summer that I have a child to raise - my son is 8 months old, and he's a busy boy.

I'm curious to see how anyone else deals with the pain, if you have children? What do you do for your pain? What do you do for exercise?

boppinbadger

I want to be a runner. Not sure if it's the best idea, but I've always wanted to. My physical therapist, when I asked his opinion, told me in no uncertain terms that I'm crazy. His exact words: ARE YOU CRAZY? I know my limitations, so I'm going to VERY slowly work my way up to it; if I can't, I can't, but I'll at least know I have tried.

I was told in no uncertain terms to avoid running as it is too high impact, it can often cause injuries and wear down joints in non-HMS people so running when you have volnerability to injury is just going to make things a lot worse...

That said, being one to not let it stop me doing anything I have done the odd bit of jogging. The key pointers I was given when I told my doctor this was that if I was determined I was going to do it then I should stick to running on grass and not concrete. Invest in the best most shock absorbing trainers you can find, and as you said - build up slowly.
And a longer slower jog is far less likely to hurt you than a fast run, you have more time to focus on your posture and that you are putting your feet down correctly (I tend to put my weight on the outer edges of mine as my body gets out of line - funny I can always tell when I am about to be in a lot of pain by how my feet hit the floor!).

boppinbadger

It's rainy and humid today - as much as I hate the winter, I hate the summer more - the humidity makes everything worse.

I'm curious to see how anyone else deals with the pain, if you have children? What do you do for your pain? What do you do for exercise?

I find it's change of season that effects me - I'm ok in winter and summer, but for those couple of weeks where there is a dramatic change in temp/humidity etc it takes my body a while to adapt and everything goes wrong!

I don't have children, but I hope to. Do you mind me asking if pregnancy/childbirth had any extra problems down to the HMS?

For the pain, I try to avoid taking pain killers until I'm at the point where I really can't cope without them. First I'll try gentle excercise and movements to try and ease it (going for a walk with the dog usually helps click my hips back into place), then if that doesn't work I'll move onto heat/cool packs (alternating, never more than 5 mins with each, as advised by physio, and never at extreames of temperatures, just warm and cool not hot and cold), and for wrists/knees/ankles I'll often bind them up as I find pressure helps the pain as well as keep them in place, but I don't like to do it too often as then you can actually weaken the joint further if you become reliant on binding to keep it in place. Sometimes I find going dancing kills all pain at least temporarily, I don't know if it's adrenaline or just psychological, but when I get on the dance floor it all just melts away! But then it sometimes backfires and I feel twice as bad after...

Excercise I do is mainly low impact stuff, walking etc. I also found lindy hop dancing has been an amazing help - focusing on posture and control of all your joints to make the moves work really helps strengthen your joints and your core. Any core strength excercises are brilliant for HMS... I have pages and pages of them from the physio but must admit I can be a bit slack at doing them unless I feel I'm losing my ability to hold good posture... I'm very much an 'excercise should be fun' type person, doing core strength excercises always feels a bit like having homework