hypermobility syndrome

lauraspence2504

hey i am on a mission to lose weight as i suffer hypermobility syndrome. Its always such a struggle what with painkillers, tablets and munching everything in sight! i need to make a difference to my weight in an attempt to make my health problems better.....so here goes!

Floricienta

Good luck on your weight loss :flowerforyou:

gillopez

Once you start, you will enjoy it, try to do it with someone to support you!

MontanaB

hey and welcome
this site is fab and you'll reach your goal in no time

gazz777

Any other sufferers ? ... I am starting a group on MFP

Shawnalee0703

Confused by all the names and technicalities but I was diagnosed with EDS at birth ( my mother has it as well and was diagnosed in the 70's) and now people mix up the two... or relate them, or confuse them or compare them or whatever. haha but There are MANY different classifications of EDS and maybe they are the "Same". The debate is everywhere.
Ok, so anyways..... I have Ehlers Danlos Syndrome as mine, VERY much so effects my skin as well as my joints. This causes trouble in tightening up skin after weight loss.
To chime in with the training aspect of things and the weight loss journey- it is not easy, no matter who you are. Just remember there is a positive for every effort you put in and each ounce of effort is getting you closer. As soon as you really start seeing results you will love it and it will keep you going!
I find that my joints hurt less when I strength train regularly. resistance training does wonders for the joints but don't be afraid to push yourself to the next level everyday. You will find that you are stronger and even more capable than you though! Stay very focused on each joint as you train it- it will ensure that you are truly strengthening and also protecting THAT joint/muscle and it will help avoid injury. Feel free to add me as a friend on here!! I have lost 70 lbs and have done it all with EDS. I may still have some body image issues do to loose skin, but I am strong and healthy and am closer and closer everyday. Just keep at it! You will succeed! Best of luck!

JoyfullMovement

Yes, I and my daughter have HMS. I was writing about it on a Fibro thread and realized I hadn't checked to see if there was an HMS group.

mjjnbla

I have EDS HMS too. I have had pain for 30 yrs in my neck and hands. I now am considering surgery on my right thumb. I am afraid! Does anyone know of a physician with knowledge in NY, NJ, PA, CT area. I am afraid I will lose my career again! I trained to be a hairdresser and found out I would not be able to do the job after completing the training (and taking out a loan to pay tuition). I now have again a career that I may not be able to continue in. I am a RN. I can't really do the things I want/need to do to fulfill my duties. I am in a job where I can sneak by at this time, but one never knows... A little triumph I powered through a 60 min Zumba video today eventhough my knee gave out on the stairs on the way to my basement gym and my ankle went out 1/2 way through the workout!. Hope maybe we can post encouragement, share triumphs/pain on this forum. I am so tired of talking to people because they see my splints and ask "do you have carpal tunnel?". They all give me that look like I have two heads to say that I have a genetic disorder. I try to hide the splint under a long sleeve and take it off outside peoples vision. I have to remove it to touch patients of course and each time it is so painful. Putting on gloves is the worst, so I don't use them as much as I should...

JoyfullMovement

I am sorry to hear you are having such issues. It is so frustrating when it makes normal life hard to get through and your job situation too. Hang in there! Good for you with the Zumba. I have been managing to do my turbo jam but the last two times I did Zumba, I kind of torked my knee. Be careful. I know what you mean about the stairs, sometimes my knee just goes or even my hip. It is a very hard thing for others to comprehend and all the issues that can come with it. My daughter is having stomach issues and I sometimes forget that is connected. I will am happy to be a sounding board. It is nice to have others who understand from experience.

Shawnalee0703

I have EDS HMS too. I have had pain for 30 yrs in my neck and hands. I now am considering surgery on my right thumb. I am afraid! Does anyone know of a physician with knowledge in NY, NJ, PA, CT area. I am afraid I will lose my career again! I trained to be a hairdresser and found out I would not be able to do the job after completing the training (and taking out a loan to pay tuition). I now have again a career that I may not be able to continue in. I am a RN. I can't really do the things I want/need to do to fulfill my duties. I am in a job where I can sneak by at this time, but one never knows... A little triumph I powered through a 60 min Zumba video today eventhough my knee gave out on the stairs on the way to my basement gym and my ankle went out 1/2 way through the workout!. Hope maybe we can post encouragement, share triumphs/pain on this forum. I am so tired of talking to people because they see my splints and ask "do you have carpal tunnel?". They all give me that look like I have two heads to say that I have a genetic disorder. I try to hide the splint under a long sleeve and take it off outside peoples vision. I have to remove it to touch patients of course and each time it is so painful. Putting on gloves is the worst, so I don't use them as much as I should...

In the last year or so I have noticed a severe increase in pain in both hands.... primarily the thumb and sometimes into the fingers.... it is the WORST when I use my cell phone frequently for different tasks. I also struggle with knee and shoulder pain. But when it is the achey time of the month.... I feel like ALL my joints are on fire off and on for a day or two! BLECH. I do have to say though I have seen a HUGE increase in my stability and strength in my joints as I continue to strength train. Resistance training, yoga, pilates would be an excellent way to strengthen but not strain those main joints- knees, ankles, hips(which slip for me) and shoulders as well.......
I hope that you recover from any surgeries quickly and that it does not end up effecting your work! I hope hope hope it all works out for the best!!!

carrotstick2012

I have hypermobility but a minimum of pain to go with it. I just avoid high impact things like running and jumping. Walking and swimming work well for me.

lookslikeyoda

My Physiotherapist said I may have Hypermobility Syndrome, I always thought it was something those contortionists have but I never realised it was such a severe health issue. I dislocate my knees a lot and it may be due to this. Always seems to be every time I'm doing well at getting fit...POP...there one goes and I'm back on crutches again. Not doing too bad this tim around, a couple of tweeks but my knees are staying strong

JoyfullMovement

Yes it can be a severe issue? Some people can be hypermobile with out the syndrome though and not have the life altering issues. I am sorry to hear about your knees. When my daughter was 11, we couldn't shop for five min before her knees were hurting and she was looking for a place to sit down. Her physical therapist showed us that, when standing, her knees were bowed backwards and her joints were under constant pressure. They started strengthing her core and then worked out to her limbs for stability. It really helped. Maybe exercises designed to strengthen supporting knee muscles would be helpful for you also. Be aware it involves other soft tissues in your body also, stomach, lungs, etc. Good luck!

lookslikeyoda

Thanks for the advice. I have tried those exercises, they do help but it all accumilates to nothing when you injure them again. It's strange because my knees dont hurt, they do crack and pop and make all kind of creepy noises but they cause me no grief until i dislocate them. its got to the point now where I just put it back in place myself and carry on with my day rather than the doctors just strapping me up. I was suppost to have surgery on both knees but my employer said they wouldnt be able to keep me on as I would have to have atleast 10 months off work so I discharged myself from the consultant and then ended up losing my job anyway due to the reccession.

CoderGal

So I have to ask...How do you know if you have Hypermobility syndrome? I know most responses will be "doctor" but I'm just curious how you came to discover there was something wrong in the first place.

Several people have asked me this recently and I don't know what it is exactly...People in dance often asked if I'm hypermobile after I did the splits or any stretches (super flexible, no problem putting my foot behind my head). I've read the wiki article but I'm still not sure if that's what I have. Since you're all talking about pain in your joints I started getting severe pain in my joints when I was about 6. The doctor said it was growing pains but I'm 28 and I'm pretty sure I'm done growing and I still have pains (in my knees hips and wrists mostly) especially when it rains? So then everyone told me I had arthritis. I also find it easy to break and sprain things...and after I hurt whatever body part I start getting pains there for the rest of life.

Anyway everything I have is kinda tolerable and I don't really want any meds or anything I was just kinda curious.

JoyfullMovement

Wow, you Are tuff! I know any joint out of place is painful. I can't imagine your knees and putting them back in yourself. Your determination is inspiring.

Shawnalee0703

It sounds very plausible.... My pain didn't start till later- teen years probably..... But ALWAYS had flexibility and high risk of dislocation. A doctor can give you a basic physical assessment.... but many dr's have NO CLUE. A genetics doc would have the best input most likely. I was diagnosed with EDS at birth because my mother has it. Life is normal... just bendy and at times full of pain! Best of luck!

So I have to ask...How do you know if you have Hypermobility syndrome? I know most responses will be "doctor" but I'm just curious how you came to discover there was something wrong in the first place.

Several people have asked me this recently and I don't know what it is exactly...People in dance often asked if I'm hypermobile after I did the splits or any stretches (super flexible, no problem putting my foot behind my head). I've read the wiki article but I'm still not sure if that's what I have. Since you're all talking about pain in your joints I started getting severe pain in my joints when I was about 6. The doctor said it was growing pains but I'm 28 and I'm pretty sure I'm done growing and I still have pains (in my knees hips and wrists mostly) especially when it rains? So then everyone told me I had arthritis. I also find it easy to break and sprain things...and after I hurt whatever body part I start getting pains there for the rest of life.

Anyway everything I have is kinda tolerable and I don't really want any meds or anything I was just kinda curious.

peachprl

I was just diagnosed with Ehlers Danlos type 3 last year (finally), so I completely understand what you are going through. It is hard when I grew up and athlete (cheerleading, ballet, gymnastics, swimming) and then being told no more high impact anything! I actually had to give up the graduate program that I was in because it was too hard on my joints (I am a nurse and was in anesthesia school and was crawling on the OR floors, etc). I have a lot of joint pain, especially with my right knee. I'm trying to get control of my health and it is a work in progress- believe me! I have good days and definitely bad days, too! Feel free to add me as a friend so we can support one another!

JoyfullMovement

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.

JoyfullMovement

http://www.hypermobilityhope.blogspot.com/

JoyfullMovement

http://www.youtube.com/watch?v=k4ob-Lf8sTo&feature=youtube_gdata_player

A doctor talking about the HMS

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.