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Is this hypermobility?

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by stevesayshi, Jul 27, 2014.

  1. stevesayshi

    stevesayshi

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    Hiya, sad to say but I am wondering if my problems may be due to connective tissue problems - something like EDS, which only became noticeable because stress degraded the tissues faster and then the virus or whatever knocked my cardiac output down.

    My maternal grandfather had RA and his brother died very young of a heart attack. He had very saggy skin. My mother has orthostatic hypotension, venous reflux, dry eyes, tinnitus, 2 hip replacements, IBS, Raynaud's (gone now I guess?) and really loose looking skin.

    On the other side of the family, the picture is less clear. My uncle has a congenital heart valve defect, and my dad has bad blood pressure even though he's in great shape. His skin is a bit loose too I guess, and he has severe tinnitus.

    I've always been far better as a swimmer than a runner, I have somewhat loose skin, very flexible joints, IBS, recently had a couple Raynaud's like episodes (except they were continuous for weeks rather than only when cold), then developed POTS and tinnitus and dry eyes. I have recently been diagnosed with arthritis of the spine and venous reflux in both legs.

    Here's a trick I can do with my feet. Is that what they mean by hypermobility? I can also touch my thumbs to my wrist (bending the palms inward, many people can do this, not flexible enough to do it the other way)
    20140727_013452.jpg
    I can turn my left foot 180 degrees back and my right 90 degrees back but I couldn't keep my balance to photo that configuration :)

    What do you think? Oh I'm a 33 year old male, yet none of my doctors give a crap why I have symptoms more commonly seen in women around the time of menopause...
    wastwater and Gingergrrl like this.
  2. WillowJ

    WillowJ Senior Member

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    It sounds like you need to find a geneticist who specializes in connective tissue diseases and takes adult patients. There are a few, but not many.

    EDS is a more "respectable" diagnosis than ME/CFS, so even though the care will still be symptomatic, it is still better care. (Plus, there are some dangerous forms, and all forms require heart monitoring.)
    Valentijn likes this.
  3. Jonathan Edwards

    Jonathan Edwards Board Member

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    This is an area where there is little agreement among medical professionals. A lot of the terms used do not really mean very much and I am personally not convinced that hypermobility explains anything except being able to do contortions and for a very small number of people genuine joint instability. I would be wary of putting fatigue or post exercise malaise down to hypermobility, if only because it might have another cause that is more important or at least one day might be treatable, whereas I am not aware of any evidence based treatment for hypermobility that would help.

    One or two specific points may be worth clarifying. 'Connective Tissue Disease' is used by medics to mean two completely different things (I used to be a Professor of Connective Tissue Medicine but avoided being one in Connective Tissue Disease). One meaning covers autoimmune syndromes like RA and lupus. The other covers genetic disorders of collagen or other tissue matrix components. The two have nothing to do with each other. Dry eyes go with RA sometimes. I was not aware they ever went with hypermobility. Coronary artery disease (and heart attack) can go with RA but the cardiac problems of genetic CTD are mostly valvular or due to aortic weakness.

    The other point is that although some genetic errors that come under EDS are known there is a vague category called EDS type III that is probably no more than a rag bag of hypermobility plus other variations that may or may not be related. Hypermobility itself has no particular cut off, although there are arbitrary scores that are often used. So being 'hypermobile' is really not much more than being 'tall' in the sense of being at one end of a range. I was involved in an early study of cardiac status in hypermobile subjects about forty years ago. There may have been a very slight correlation but my overall impression was that the great majority of people labelled as hypermobile are just at the end of a normal spectrum and there is no particular reason to blame the mobile joints for any symptoms. Most professional ballet dancers are hypermobile.

    So I would be wary of health professionals who might claim to 'explain' CFS type symptoms on the basis of hypermobility.
    WillowJ, rosie26, daisybell and 2 others like this.
  4. Esther12

    Esther12 Senior Member

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    Equally though, a diagnosis of something like EDS III is likely to be socially preferable to CFS, as even if it does not lead to effective treatments, it is more likely to lead to help people avoid some of the problems around CFS. Indeed, it seems to me (just from speaking to patients) that people with an EDS III diagnosis are likely to be more thoroughly investigated for alternative causes of symptoms than those with a diagnosis of CFS, where there is a greater willingness to just medicalise patient's cognitions and attitude.
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  5. Jonathan Edwards

    Jonathan Edwards Board Member

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    But do we really want people to have diagnosis that is actually nothing to do with what is wrong with them, Esther? I think I would agree with you if the alternative was a diagnosis of 'CFS' then anything might be better, but I am not suggesting 'diagnosing CFS'. I had patients with fatigue and pains and post exercise malaise and did what ever tests seemed to be important but if nothing showed up I just tried to explain that we were in an area where some reassurances about what was not wrong could be given but that not much was known about what WAS wrong and what was beneficial. If we needed a diagnosis I tended to go with what the patient was most comfortable with in terms of how they saw what was wrong. I may have been wrong but my policy was always to be up front with patients about what was not known rather than giving a label to take home just for the sake of it.

    And although EDS type III may sound respectable 'socially' it is likely to induce a response from a medic of 'Oh-oh, one of those eh!' even more than CFS. Either that or it will lead to popping in to a pigeon hole that says 'refer to physio' and maybe check some physiological measurements that really don't need checking but give everyone a false sense of security (and probably not check things that might reveal a specific treatable condition).

    To put it another way I have always believed that there are several unknown pathological processes that produce devastating fatigue that we could call 'MEs' if we want a 'disease' label. Surely the need is to get medics to agree on this rather than conveniently attribute symptoms to an irrelevant variation on the normal?
    wastwater, NK17, daisybell and 3 others like this.
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @stevesayshi

    You may well be hypermobile--I am too. But I think @Jonathan Edwards's post here is very important as he has been professionally involved with connective tissue medicine and is very aware of the issues and non-issues of connective tissue disease.

    Personally I would not bother with pursuing a diagnosis with a geneticist, because, "what then?" The most important things I have learned about connective tissue disease are freely available on websites dedicated to it. For me, I am prone to structural connective tissue problems. There is nothing to do about this except not engage in activities that involve over-stretching and to get regular "tune-ups" with an osteopath.

    I do have a couple of very mildly prolapsed heart valves. My cardiologist watches this but there have been no changes over the years. I probably have venous reflux in my legs (orthostatic intolerance has been confirmed by an autonomic specialist who did tilt table testing) and wearing good compression knee socks helps a great deal.

    The point, for me, is that I was born with hypermobility and it never bothered me much in the years before I became very ill with ME/CFS. I have no reason to think it is making a significant difference in my health now, though it is likely a factor that contributes to OI.

    Though, if you or your doctors had reason to suspect what they call the vascular form of EDS, that would be good to investigate as this can haves serious (non-ME/CFS) health consequences.

    Sushi
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  7. Valentijn

    Valentijn Activity Level: 3

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    Both EDS and ME/CFS frequently feature problems with orthostatic intolerance (OI), but doctors are advised by NICE not to test for it routinely in ME/CFS patients in the UK. And without testing, treatment is very unlikely.

    Because OI is very disabling, and treatment can make a big difference in quality of life for ME/CFS patients, the additional or alternative diagnosis of EDS can open up possibilities for actual medical care. Similarly, a somewhat useful tactic for an ME patient in any country can be to very innocently question the ME diagnosis - "But I'm not very fatigued, and CBT and GET didn't help me at all, even though NICE/etc says they should help ME/CFS patients. Maybe I have something else after all. How about some referrals for my symptoms?" :rolleyes:

    Due to the psychosomatic description and treatments given for ME/CFS, being diagnosed with it is generally an indication for the doctor to provide as little testing and medical care as possible. EDS may have its own problems regarding a reputation for over-diagnosis, but at least it doesn't result in the cessation of medical care, and might even result in useful treatment.
    Last edited: Jul 27, 2014
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  8. Esther12

    Esther12 Senior Member

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    I think that probably is the best approach at the moment - good work! It would be nice to see more of an attempt to educate society about the sizeable gaps in our knowledge, so there was less of a need for diagnoses in these situations, but it's not really in the interests of those with medical authority like the Royal College of GPs to run a 'we know less that you think' campaign.

    I'm not too sure what I think about a lot of the hypermobility stuff, other than it seeming preferable to CFS stuff. It does seem that those who fulfil the criteria of diagnoses like EDS III suffer more pain, fatigue and disability; and that there's definitely an association with autonomic difficulties; but I do also share your concerns about people too readily assuming that hypermobility is an explanation of their health problems when others can also fulfil the criteria and be just as flexible, but not suffer from pain, fatigue or autonomic problems. It could be that people with hypermobility issues are likely to be under more strain, which could leave them more vulnerable to other problems too?

    Maybe I expect too little from modern medicine - I can forget that it's reasonable for people to expect a real explanation for their ill health!

    I wasn't aware of that. Just from what I've seen on-line and in papers, things looks a lot better with EDS III, but I often get the impression that what is said at conferences, amongst colleague and in private can be rather less respectful. One of the advantages EDS III seems to me to have is that it is relatively cheap in terms of total cost to the government and insurance companies, and so is able to fly under the radar somewhat, and escape some of the unhelpful attention that's drawn to CFS.

    There's a disability campaigner who works with the Spartacus campaign known as 'Bendygirl' who has done some really good work, and I think that she'd have a far harder time of it if she still had the CFS label (which I think she did have for a while).
  9. stevesayshi

    stevesayshi

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    Thanks Dr. Edwards and all for your input. Because I didn't have any problems until relatively recently I think I will put the genetic testing at a lower priority.

    I did run my 23andme raw data through one site that says I am homozygous for a defect in type XVII collagen... Then I clicked on the wikipedia link for Epidermolysis bullosa... don't think I have that. Hurray 23andme, providing us with both helpful data and useless fear!
  10. VeganMonkey

    VeganMonkey Senior Member

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    I have Elher-Danlos, I had been diagnosed with CFS for a long time, but once I was diagnosed it made sense why I have POTS and I could be treated for it and avoid more injuries. So I don't think an EDS diagnosis is useless.
    kevinj likes this.
  11. VeganMonkey

    VeganMonkey Senior Member

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    I thought routine testing for POTS/OI was done by all ME/CFS specialists, both mine did (and that's how we got onto the track of EDS) and I was also given medication for it.
  12. Valentijn

    Valentijn Activity Level: 3

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    Not by the fake specialists (CBT/GET sort) who work for the NHS in the UK. And NICE specifically recommends that doctors not test ME/CFS patients for OI: http://www.nice.org.uk/guidance/cg53/resources/do-not-do

    The TTT is about halfway down the first page.
  13. VeganMonkey

    VeganMonkey Senior Member

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    I'm not in the UK and my specialists are not fake specialists. We have two very good CFS specialists in my city and they do test. Because most people with ME/CFS do have POTS. Not sure why they would recommend not to test it, what if people to on undiagnosed with POTS, that's awful, because it is treatable.

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