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"Joint Hypermobility and CFS"

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by Sushi, Jul 15, 2012.

  1. biophile

    biophile Places I'd rather be.

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    About 90 degrees for all (photo below). The pinkies and the index fingers are more like 100 degrees individually:

    fingers-bend.jpg

    Isn't that normal? My toes are similar. I think my feet are flexible one way but inflexible the other way.

    FWIW, my hamstrings have poor flexibility like yours and I am about 25cm away from touching the toes.

    My neck and hamstrings became noticeably stiff during the onset of CFS symptoms, but have improved.

    @Sean, I suspect have a degree of TMJ problems.
     
    Last edited: Apr 9, 2014
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  2. Sean

    Sean Senior Member

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    bp

    You are more flexible than me. I am only borderline hypermobile. Some can easily bend their hands all the way backwards onto their forearm.
     
  3. Valentijn

    Valentijn Activity Level: 3

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    Oh, and I can do the thumb-to-forearm maneuver, though it's uncomfortable.
     
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  4. Hip

    Hip Senior Member

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    Wow, you are close to being a contortionist, @biophile !

    The picture below shows about the maximum flexibly I can get when I push my hands together quite forcefully (my whole hand feels tense when pushing at this level of pressure).

    Hands pushed together 2.jpg

    Some years ago I went to try out an osteopath. This osteopath had a bit of difficulty doing the usual osteopathic "cracking" of the joints, and told me afterwards that my bone architecture and joints were "very solidly built".

    This osteopath told me that in his work, he sees a whole spectrum of bodily architectures: from people on which he can easily and effortlessly "crack" the joints, to those like me who he classed as a "very solidly built," that require much more force to perform joint "cracking." I presume what he referrers to as "solidly built" is perhaps a combination of heaver bone structures around the joints, and/or tauter, thicker ligaments holding the joints together.
     
  5. biophile

    biophile Places I'd rather be.

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    Interesting, Hip. Someone also mentioned earlier that it is possible to have loose joints but tight tendons. I never really thought about the combinations before. I can't do the thumb-to-forearm maneuver anymore, about an inch or so away.
     
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  6. Esther12

    Esther12 Senior Member

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    lol - no!
     
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  7. WillowJ

    WillowJ Senior Member

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    It's more complex than that.

    There are multiple kinds of EDS, and only one of them has a diagnosis related to joint hypermobility. For that one, there are several points they check, and one must have a given number of those (like fibromyalgia--there are multiple trigger points but at some point doctors agreed on 18 which would be diagnostic, but one doesn't need all 18 for a diagnosis, and there are other criteria, too.)

    There are actually two criteria for EDS-III, joint hypermobility type: this site uses the Beighton criteria for assessing joint hypermobility (there is also a Brighton criteria, which is a bit confusing)
    http://www.ehlersdanlosnetwork.org/hypermobility.html

    Pictures for JH here (beighton)

    @Valentijn you get a diagnostic point towards joint hypermobility for being able to put your palms on the floor without bending your knees, and another for thumb-to-forearm. :)

    As you can see, diagnostic points for EDS joint hypermobility type also include skin criteria, IBS, OI, and bone and mouth items. (I don't see on this page how many major and how many minor criteria one has to meet, but maybe I missed something.) Not things an untrained doctor would necessarily think to connect, though they are all related to connective tissue.

    The other trouble is that these diseases can exist in various severity states from very mild (one notices joint hypermobility or something like that, but isn't ill) to severe (one is constantly very ill with lots of symptoms similar to ME, may get frequent fractures and other complications) to very severe (one dies of blood vessel problems from one type).

    And the various types of EDS can even overlap (one might have one type with features of another type).

    It is caused by a collagen deficiency. There are various molecules of collagen (if I remember right), and they should be put together in a triple helix (basically a sort of a microscopic braid of discountinous strands), but mutations causing defects can exist in various places along the strands of collagen.

    Protein function is based on shape and on the chemical properties in certain places. If you change the shape (due to a mutation) or the chemical properties (say something has a positive charge when it should have a negative one), it won't fit together right with the other proteins.

    So then the collagen "braid" doesn't fit together, but depending on how many changes, where the change is located, how many strands are affected, and maybe which part of connective tissue that type of collagen goes to, you'll get problems of different types and severity.

    The genes have been discovered for some types, like vascular EDS (the scary one), but not for other types (of course not for joint hypermobility EDS, because anything more likely in people with ME would always be hard, right?), which might be [my speculation, unless I forgot hearing about this] from having multiple genes involved (makes it harder to find, I think).

    Unusual body proportions do go with some connective tissue diseases (e.g. Marfan syndrome), but you'd need a geneticist who specializes in those, to examine you and tell you what one, if any. They'll measure things with a measuring tape to calculate ratios. :)
     
    Last edited: Apr 10, 2014
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  8. WillowJ

    WillowJ Senior Member

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    ps,in addition to Marfan proper, I saw "marfanoid habitus" mentioned in some of the descriptions of one or more EDS types, including HM type
     
  9. Allyson

    Allyson *****

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    I am not HM either Madie, but they now say you can have EDS and NOT be HM - many stiffen with age, or it may be a question of the muscle fascia - which is connective tissue - being tighter in some - this may also maskjoint HM in some it is thought..
     
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  10. Hip

    Hip Senior Member

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    Is there any evidence for an association between EDS and ME/CFS patients who don't have orthostatic intolerance?

    This study found an association between EDS and ME/CFS patients who do have OI.

    OI conditions like POTS can cause symptoms that mimic ME/CFS, and since stretchy veins from EDS will presumably worsen OI, it is clear why EDS would be found more commonly in those with OI and ME/CFS.

    But has EDS been shown to be more common in pure ME/CFS without OI? Is there any evidence for a statistical association between ME/CFS without OI and EDS?
     
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  11. WillowJ

    WillowJ Senior Member

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    Cool, I hadn't seen that study previously, thanks.

    There's also an association between ME/CFS and joint hypermobility, which is debateably EDS hypermobility type (some docs think it is, and some think it's not; the former especially say it's silly to call JH "benign").

    http://www.ncbi.nlm.nih.gov/pubmed/16396727
    http://www.ncbi.nlm.nih.gov/pubmed/12219066

    this one couldn't find a JH association but did find skin extensibility and low blood pressure. They attributed bone density problems to inactivity. They seem confused about the nature of the collagen disorder, as I have never heard of a urine test for collagen metabolism being used for EDS before.
    http://www.ncbi.nlm.nih.gov/pubmed/15805343
     
  12. biophile

    biophile Places I'd rather be.

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    Not even PACE Trial Normal ®™ ? ;)
     
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  13. Hip

    Hip Senior Member

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    @WillowJ

    Any idea of why joint hypermobility / EDS might be more prevalent in ME/CFS? Is there a high degree of inflammation or neuroinflammation in joint hypermobility / EDS, for example, which might augment and exacerbate the neuroinflammation already present in ME/CFS?


    It might be interesting to perform a quick poll on this forum, entitled say "Do you have joint hypermobility, and if so what is your Beighton Score?", to see how many people here have hypermobility as defined by the Beighton Score that you linked to. This Beighton Score looks very quick and easy to answer, so it would be ideal for a simple poll on this forum. If I understand correctly, the Beighton Score goes from 0 to 9, with 9 being very hypermobile. So then you would have 10 possible answers for the poll, once for each of the 0 to 9 range of the score.

    Or might there be a better or easier way to determine joint hypermobility for the purpose of such as poll?
     
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  14. Sean

    Sean Senior Member

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    No, bp, you are a genuine freak.

    ;)
     
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  15. WillowJ

    WillowJ Senior Member

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    I don't know. They don't seem to think of it as an inflammatory disease, as far as I can tell, though maybe I need to read more papers, yet they explain the next-day joint pain as essentially an autoimmune reaction.

    So it's possible that, if ME is an autoimmune disease, it falls into the category of: people with one autoimmune disease are likely to gain additional autoimmune diagnoses.

    That seems to be the simplest way to answer: What is your Beighton score.

    However half the specialists seem to be taking other things into account, such as: were you hypermobile when younger, and do you have a family history, and do you have other (nondiagnostic) joints that slip or pop or hyperextend.

    The Brighton criteria use:

    A Beighton score of 4 is required for a major score (in the past counts), but only 1 is required for a minor score (none if over 50 years of age), and there are 8 items on the minor list. (The other item on the major criteria list is arthalgia, or joint pain without redness or swelling, which is also diagnostic for ME)

    It's the same list here: http://www.nhs.uk/Conditions/Joint-hypermobility/Pages/Diagnosis.aspx

    From hypermobility.org :
     
    Last edited: Apr 15, 2014
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  16. WillowJ

    WillowJ Senior Member

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    Of course, this is doubtless why you mentioned it in the first place, @Sean :)
     
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  17. South

    South Senior Member

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    @floydguy Is there a study or something you saw on this? I'd be interested in reading details, if you have any.
     
  18. Allyson

    Allyson *****

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    yes and you can have tight muscles to Biblio....that pic looks lilke you are very hypermobile - you can do a Beighton's score to test yourself

    many think their joint hypermobility is normal as they have "always been able to do it"!

    Ally
     
  19. Allyson

    Allyson *****

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    yes agree WIllow - only you do not need only a geneticist to diagnose EDS it cn be any kid of spedialist who knows about it - here is a fuller symptom list that is now used to diagnose it by some physicians - first post in this thread

    http://forum.notcrazy.net/index.php?topic=9571.0


    Ally
     
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  20. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    Not really what you are aiming for, but I'll toss this in anyway:
    High prevalence of eosinophilic esophagitis in patients with inherited connective tissue disorders.
    https://www.ncbi.nlm.nih.gov/pubmed/23608731
    EoE is often mistaken for GERD. Diagnosis of EoE involves trying PPIs like Prilosec but getting no relief. Endoscopic biopsy confirms.

    Eosinophils are involved in food allergy. EoE is an emerging disorder, supposedly even many gastro docs don't quite know much about it yet.

    This group is heavily involved: https://www.aaaai.org/global/latest...ic-esophagitis-connective-tissue-disorde.aspx
     

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