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Flexible Joints

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by newearth, Jun 7, 2013.

  1. newearth

    newearth

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    Does anyone else have hypermobility/flexible jonts? As you can see from my pic my elbow/shoulder is pretty flexible. This is just an example...other joints are flexible also. I am in a flair (lasting for weeks now) so can only comfortably rotate 180 but usually can turn round so hand is facing body. Any of you also have hypermobility? It doesnt help pain levels as my joints seem loose and crack and crunch a lot. Knees, ankles, wrists, hips, shoulders, neck. Makes life even harder on top of the pain and exhaustion!
     

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  2. VeganMonkey

    VeganMonkey Senior Member

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    That picture looks familiar! I can do that too. I can do all the things from the Brighton Scale (more about that in here: http://en.wikipedia.org/wiki/Hypermobility) the only thing I don't have is where people can bend their back backwards like gymnasts can.
    My joints click and clunk too and feel kind of 'loose' sometimes. My shoulders ATM feel loose and painful. I attached a picture of things I can do with my legs and feet, it isn't the best picture but am planning to take some good ones soon. I'm stiff ATM (due to cold weather) so it doesn't look as extreme as it normally does.
     

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  3. newearth

    newearth

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    yeah I'm pretty stiff too VeganMonkey! Shocking ATM I used to be much more flexible as a child/adolescent but the older I'm getting the worse it is. I used to be able to bend back backwards...havent tried in a while lol
     
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  4. newearth

    newearth

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    I can do the feet thing too!! LOL
     
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  5. VeganMonkey

    VeganMonkey Senior Member

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    Oh normally I'm not stiff, I'm bendy compared to other people even when stiff, but it feels stiff to me, if that makes sense? In winter the cold makes me feel stiffer. Think it's a fibromyalgia thing. Not sure.

    I was wondering, the 2011 International consensus document says that many people with ME/cfs have joint hypermolibity. I am currently looking into Ehlers-Danlso Syndrome (EDS) diagnosis and wondered about the overlap. My ME/CFS specialist is curious about it too, I will know later this month if I have EDS or not.
     
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  6. newearth

    newearth

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    Hhmmm yes I was wondering about the link so wanted to find out if others were the same re hypermobility. Seems to be fairly common. Good luck with finding out hope it brings you answers! I for sure would like some answers as I seem to be going downhill rapidly. My mum and grandmother are also hypermobile so thinking I should get checked out...
     
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  7. VeganMonkey

    VeganMonkey Senior Member

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    Yes many of my family members too and all sorts of EDS symptoms, but not as ill as me. We do have a history of fatigue and sickness in the family, I'm the 4th generation and the worst (and the generations are going too stop with me LOL) although my great grandmother was very bad too, but not bad enough to raise 2 kids (my grandfather, her kid, had it too, he still functioned and better than his mother and his kid, my mother, got a lot of illnesses and issues too like me)

    I have been diagnosed with ME/CFS and always thought that's what runs in the family, but could be EDS, or even both?
     
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  8. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Allyson started a thread on EDS that grew to hundreds of replies. It's in the miscellaneous forum.
     
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  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi newearth,

    From the pic it looks like Classic Ehlers-Danlos Sydrome (a collagen disorder). I have it to. It is fairly common in ME. There is a thread about it that you might want to read.

    It is good to avoid hyperextending your joints if you can, as this can make the problem worse. Some of us work on strengthening core muscles to help support joints, tendons, ligaments, etc.

    Best wishes,
    Sushi
     
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  10. newearth

    newearth

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    Hi Sushi thanks, yep I try not to hyperextend wherever possible as I only suffer more so if I do. Is this the thread you mean for me to look at?

    http://forums.phoenixrising.me/index.php?threads/is-me-due-to-ehlers-danlos-syndrome-stretchy-veins.20351/
     
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  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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  12. newearth

    newearth

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    I am really interested to know how many of you have flexible joints? I seem to be pretty flexible and today reminded myself how much so cutting my toenails (yes gross I know sorry lol) My first 3 toes on each foot hyperflex...so the top "knuckle" of the toes flexes the wrong way. Not much of a problem really (they dont cause pain like my other joints) but for some reason is the only time I freak myself out hahahaha I hate feet!!!

    Can anyone please share their flexibility and how it affects you (if it does?)
     
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  13. ahimsa

    ahimsa Senior Member

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    I don't have flexible joints. I can't do any of the things shown in the photos above, or touch my thumb to my wrist, touch my tongue to my nose, etc.

    It's still a possibility that I have EDS, of course. But if I do then it's one of the other types of EDS since I'm not extra flexible, don't have stretchy skin, never dislocated any joints, etc.

    PS. Welcome to the forum, newearth! Where are you from?
     
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  14. Allyson

    Allyson *****

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    Hi Ahimsa -

    no i am really inflexible too - quite stiff actually - and cannot do any party tricks either - though many in my family can touch their nose with their tongue.

    I have been diagnosed with EDS though nonetheless.

    My cousin has an illness called Arthrogyroposis which is apparaently connected to EDS genetically and his muscles are all very contracted - since birth; he has been in a wheelchair all his life because of it.

    I have read of a type of EDS called musculocontractural type but I dont think that is what I have. I thnk the thing is that the basic buildiing block - connective tissue - is faulty - and so that can manifest in very different ways in different people.

    Even the WIki site on EDS says theer is lots of crossover between the types - so they are not clear cut. But people seem to forget this.

    SO Newearth - to annswer your uestion - No I have no double jointedness or felxibility at all - quite the opposite.

    ANd i have heard that people may be hyperflexible when young but stiffen up as they get older -arthritic condidtions may be involved there too.

    Cheers

    A
     
  15. ahimsa

    ahimsa Senior Member

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    Hi Allyson,

    I think that agrees with what I posted--that someone can have EDS without being flexible.

    Sorry if something in my post confused you.
     
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  16. newearth

    newearth

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    Hi Ahimsa I am from the UK, OK so 2 so far not bendy and 3 of us are lol Although I am getting very stiff and can no longer do what I used to when younger...and makes the pain much worse IMO
     
  17. newearth

    newearth

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    I got my referrals to the specialist to check for EDS...gonna be a long wait tho but at least I will find out and then I will know tjhe best kind of treatment and whether or not I should be exercising the way I am told to lol
     
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  18. Valentijn

    Valentijn Activity Level: 3

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    It's known which genes are involved in causing the various types of EDS, so it can be tested for that way to some extent. The gene I've been looking into so far has a lot of SNPs where 0-5% of the population has the less common genotypes. So it seems like there's little room for error on that gene, and any abnormalities might be a pretty good indicator of a likely problem.
     
  19. John H Wolfe

    John H Wolfe Senior Member

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    According to Dr. Rowe approx. 2/3 of adolescents with ME/CFS have demonstrable hypermobility. He believes it is a risk factor for (peripheral) sensitisation which may modulate the effect of other parts of the ME/CFS pathophysiological jigsaw puzzle. I've developed my own theory to cater for (and centre on) this principal as I'm fairly convinced the link is significant
     
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  20. TCP36

    TCP36 I'm not giving up, despite the setbacks and BS!

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    Although I don't have EDS, I have had knee dislocations and my elbows over-flex. The later have been spotted by 3 hospital consultants. I have severe pain in all of my joints.
     
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