ehler-danlos syndrome question

Discussion in 'Fibromyalgia Main Forum' started by simonedb, Nov 18, 2008.

  1. simonedb

    simonedb Member

    does anyone know how you diagnose type 3? I am curious to rule that out.
  2. simonedb

    simonedb Member

    thanks, will check that out
    from what I have read about e/d3 I have some of the criteria with some hypermobility and the eyes, maybe heart etc
    I guess more importantly is it useful to figure out if might have it? would i be treated any differently? anyone out there dx with it and found some useful tx? I am already treating all the symptoms i have that could be it, but am curious.
  3. justjanelle

    justjanelle New Member

    I have it. So do both my kids, all 4 of my siblings, mom and practically everyone on mom's side of the family. We also have the Type 3 which used to be called Benign Hypermobility Type.

    Sadly, having a diagnosis doesn't help much. There isn't really a treatment for the Syndrome itself, but only treatment for the symptoms. It sounds like you're already doing that. The main thing is to avoid over-stressing the joints and getting dislocations taken care of quickly.

    There's not a lot they can do for the times when things are partly out and you have that painful "catching" as you move. Most doctors don't even seem to understand the concept of that not-quite-in-the-right-place-but-not-quite-dislocated-either problem. I have to just use anti-inflamatories and try to move it around until you find the right movement and it goes back into place on its own.

    Sometimes if you can find a good physical therapist they can help you strengthen the muscles around specific joints (I'm assuming that you have one or two joints that are especially "bad" for you -- in our family, everyone has different "bad" spots in addition to the more general hypermobility in all the joints. I have worse problems with my knees and shoulders, one sister has hers worst in the hips, my brother keeps dislocating fingers and wrists etc.)

    A good physical therapist will help you strengthen the muscles that help keep the joints in place, and do it without putting too much stress on the joints in the process. A bad physical therapist can actually cause dislocations.

    I wish I could give you better news. But realistically getting the diagnosis doesn't really seem to make much difference in treatment. The most help I've ever gotten from a doctor who wasn't actually fixing a dislocation was "hmm... that's interesting." An obstetrician actually said "what an opportunity!" when I was pregnant with my first child. I don't think they learn much about it in medical school -- they seem to have the impression that it's rare. Maybe it is, but certainly not among my relatives!

    I rarely even go to the doctor for dislocations anymore unless I can't get it back in myself.

    Best wishes,

    [This Message was Edited on 11/19/2008]
  4. hollie9

    hollie9 New Member

    I've had bone to bone hips (fixed with resurfacing) and now bone to bone knees. I am definitely hypermobile and working with a good physical therapist.

    My excellent rheumatologist cannot pin down any inflammatory arthritis in me to explain this.

    Could ED be responsible for my joints going bad, I'm 58?

  5. justjanelle

    justjanelle New Member

    I can only say that Ehlers-Danlos could possibly be responsible for your joints going bad. I can't say for sure that that IS the cause though.

    What we've seen in my family is that people with Ehlers-Danlos Syndrome do tend to have earlier and worse arthritis. This is the osteoarthritis that comes from wear and tear, not the rheumatoid arthritis type.

    I've asked my rheumatologist about this connection, and he said that as far as he knew there were no studies done on it. Mostly because so few people have Ehlers-Danlos that it would be tough to get enough together for a study. But he does agree with my theory on E-D and arthritis.

    That theory is that the extra looseness in our joints causes excessive wear as the joints slop around rather than staying neatly in place. Then the extra wear causes the onset of the osteoarthritis.

    I'm thinking maybe in your case, the extra sloppiness in your joints lead to grinding away the cartilage.

    Best wishes,
  6. simonedb

    simonedb Member

    thx for the info you guys
  7. hollie9

    hollie9 New Member

    What you said, that's what my PT thinks too. So she's training me out of my hypermobility with Pilates (core, core, core). Hope she's successful, it's a bummer keeping up with joint replacement. I haven't had any dislocations yet though.


  8. tansy

    tansy New Member

    is the term often most often used in the UK but only hypermobility if just the joints are affected. As other members of my family have discovered doctors do not understand this at all well but several of the PTs I have seen do. No one has been investigated or tested to ascertain which of the hypermobility syndromes we have; it's only done when the more serious hypermobility syndromes are suspected.

    There's a UK patient organisation see

    It was only when some Tx (mostly non-pharmaceutical) had some efffect that I could work at strenthening my core and lower limb muscles so they supported my lax joints bettter; I had to use a pilates machine to achieve this. I even managed to restore some neuralpathways in my lower limbs after many years of failed PT programmes. The difference in my ability to rise from a lying down position and sit felt pretty miraculous too.

    I have had shoulder disclocations in the past but none in more recent years; I am struggling to improve my upper limb strength etc though. Nerve compression disorders have been my main problem; having ME has made their impact all the greater. My sister and niece were born with hip displacement etc and were told this is often a feature of hypermobility syndromes.

    Fortunately I have not needed any joint replacements and so far most of my relatives who have inherited this trait have either managed to avoid the need for them or have only had a few. However, we have had early onset OA

    My son had problems due to the classic laxity in the blood vessels along with the immunological issues and coagulopathies often found in these DDs. He is doing much better now and able to work out in the gym again; he has done so well he is back on track for the career he has tried to persue since graduation.

    There's a higher incidence of EDS, and other hypermobility syndromes, in these DDs especially FM; sometimes CFS is misdiagnosed. Dr Byron Hyde has written about EDS and ME.

    tc, Tansy
    [This Message was Edited on 11/20/2008]
  9. simonedb

    simonedb Member

    i have been told by pts and even one pain doc that i have some hypermobility, its worst in my neck back when i made mistake of trying chiropractors and they loosened it way up, big mistake

    at one point the medx pt machine helped strengthen my core but then a few years later when i tried it again it flared me up, too rigorous or something

    anyway i have thought of pilates but concern i have is that doing any sort of a sit up can make my neck go out or otherwise irritate it, its hypermobile, i have djd, stenosis, bone spur etc in cervical area so lots of things can flare there---is there a way to do pilates with out that move?

    and tansy what about blood vessels? i have no idea if thats an issue, how do u dx that?
  10. hollie9

    hollie9 New Member

    I have them. I always test as a "bleeder" and have to produce a hematologist letter that I have a rare "Haggeman factor" that throws my blood test and actually makes me more likely to get blood clots. My CFS doc told me he thought it was all hooey and actually caused by CFS, but perhaps it is part of the hypermobility syndrome like you say. Very interesting.

    Yeah, I think Pilates is the only way we can work to get the proper joint support. As my PT says, Yoga attracts hypermobile people like me but it doesn't work to properly support the joints. I've found I can build up my strength and stamina over time, usually 6 months, and then the exercise doesn't cause flares anymore and I've gotten very strong, both upper and lower body. I've been using the pilates machines and my PT, rather than mat pilates.

    Thanks for the info,

  11. tansy

    tansy New Member

    Hi Simone

    I have similar cervical spine issues so used my pilates machine for lower body exercises only for a long time; just improving core strength helped with the cervical spine Sx because posture is improved and the neck muscles don't have to work so hard.

    At a much later date I used an exercise called the hundreds but my cervical spine can only tolerate 10; but just that was enough to strengthen some of my neck muscles further. I do not use this exercise at all when my cervical spine Sx flare up. Sit ups are not recommended when there are problems with the cervical spine and as I discovered not even necessary.

    My cervical spine issues have not gone away but they're less severe; likewise some of the Sx related to nerve compression in that area. Not gone but easier to live with now.

    My local haematology department diagnosed my son and I; they also carried out immune and coagulation sudies. We have low platelets but even so had conditions related to coagulation and weakness withing the blood vessels. Blood pooling and orthostatic intolerance were considered when we were Dx; these became worse after we became ill. A rheumy also Dx my son with hypermobility syndrome but the ones I saw did not have a clue even after it was identified; but then they also missed other obvious stuff.

    We have the classic proportions; my sister, who is the most severely affected relative hypermobility-wise has the most pronounced long arm span etc. For years she equated our later Sx with hers, fatigue can be a Sx too, and it was only recently she fully understood the difference.

    tc, Tansy
  12. tansy

    tansy New Member

    ie being bleeders but prone to blood clots but it's not part of hypermobility; it's the weakness within the blood vessels, vascular system etc, that is part of a hypermobility synsdrome. I had orthostatic intolerance to a lesser degree before the acute onset of ME but it became much worse.

    If we have inherited a tendancy towards a coagulopathy then we are more likely to have an exacerbation of this problem if we become ill with ME and CFS; David Berg explained this to me and several ME/lyme specialists have recognised the link too. When tested a high percentage of patients with ME/CFS and lyme have an inherited coagulopathy.

    My son and I find natto excellent for this; rather than make us bleed more we both now have higher platelet numbers and lower fibrinogen levels in our tests.

    tc, Tansy
  13. simonedb

    simonedb Member

    say how much longer would your arms spread out be than your height? I can't find good info on it tonight, tansy do you know? anyone have a link to good info on that?
    what is "normal" for peoples arm span compared to their height?
  14. tansy

    tansy New Member

    arm span to height ratio >1.03; most have long legs and a swan neck is often present.

    tc, Tansy