Question For People Up On Hypermobility

[ramakentesh]

My new doctor tested me for hypermobility of joints today and apparently I had some hypermobility - I can place the ball of my foot on my forehead without undue difficulty, my fingers bend back further than normal and my knees bend foreward slightly.

He said that he has found that nearly all his POTS patients exhibit some hypermobile joints. He didnt suggest that there was a direct causal link, but that there is some co-occurance in POTS.

Just wonder what others thoughts are on these comments.

[EarthMother]

I hadn't ever seen those examples as hypermobility before. I've always been able to touch my foot to my head with ease ... however with legs straight I'd be hard pressed to touch my fingertips to my toes! Like my hip socket is very mobile (easy for me to sit full lotus) but my hamstrings are outragiously tight.

What does it mean for "knees to bend forward" ... I can't picture that in my mind.

The images I saw on the web for hypermobility had fingers bending WAY back, not just a bit more than normal.

Did your Doc suggest anything new by way of treatment, if he suspected hypermobility?

[tinkerbella]

interesting thought as I've always been very flexible. taught water exercise for years and was always able to put my leg around my neck, touch my toes, when many younger can't. very flexible. i used to make my class laugh and say, "one day i'll get stuck this way." lol! just call 911 if i do.

BellaMia~

[morgan617]

No idea Rama, I'd be having body parts break off if I tried that stuff. I'm about as flexible as a rock. morgan

[mkoven]

If you are wondering if you have a connective tissue disorder that is behind your ans issues, it may be worth pursuing. it is important, though, to be evaluated by someone very experienced in recognizing and following such issues. my best experience was with Clair Francomano, a geneticist who used to run the NIH studies on heritable connective tissue disorders. she's seen thousands of cases and knows about the ans component. It would be important to know the experts where you are. the average doctor may not have much experience and look for extremes of flexibility that are not necessary to demonstrate that there is a collagen defect.

I definitely have a connective tissue disorder that we are calling eds, for lack of a more precise label for my particular brand of tissue fragility/elasticity. parts of me are quite hypermobile, parts of me aren't, but all of me is fragile, as I've injured most joints at some point with minimal trauma. she was also able to look at the feel of my skin, the ratio of my wing span to height, high arched palate. My knees and elbows hyperextend quite a bit, but my fingers and hands are more fragile than they are stretchy. But she has enough experience to realize that there are different variants of these disorders. and the fact that my pelvis, hips, lower back, and neck are barely holding on, with constant subluxations is not just part of normal wear and tear.

I'm currently waiting for results to see if I have cranial-cervical instabiolity from a hypermobile skull; my aorta also has to be monitored periodically, in addition to the endless physical therapy to stabilize joints and keep me functional.

[firewatcher]

I am and have always been extremely flexible. My Pilates instructor/PT says that I am unusually so. However, when each joint was evaluated independently, there was normal range of motion and no hyperflexion. I just have full range of motion in all my joints which is simply unusual in an adult. If you score high on the EDS mobility scale, see a specialist. The testing for EDS is extremely specific and many docs cannot do it correctly.

[jump]

Hm this is interesting to me.

I, too, can easily touch my foot to my forehead. I didn't know some people can't do this!

My joints have always been a little too loose. My doctor once told me I have loose tendons, or ligaments, or something. When I used to run, I injured my ankles a lot because they would roll so easily and not snap back into place; the range of motion in my ankles is unusual for someone who does nothing to increase it. However, I feel very certain I'm no where close to having a connective tissue disorder. In fact, all my siblings have the same "loose joint" problem - we're all flexible without stretching or making an effort to be, and we've all had ankle problems from the ligaments being too loose.

I've always thought of my flexibility as a good thing for the most part, and while I certainly don't think it has caused my POTS, maybe it helped me be "predisposed" to developing it or something.

[ramakentesh]

talk about a false alarm! nearly all my work mates can touch their foot onto their forehead and had fingers as flexible as mine... I did read somewhere that people with EDS, Marfans, are more likely to have either Mitral valve prolapse or POTS.

It doesnt mean that there will be any difference to my treatment which he wants to be graded exercise basically.

[mkoven]

I think it does make a difference in treatment, as it points to a mechanism...poor vascular tone. I do think it is underdiagnosed. I've had some docs tell me I was "normal," but then couldn't explain all my injuries and subluxations. My beighton score is 4 at best. I think it is only very experienced docs who can get an overall sense of the "feel" of the tissue to know. The geneticist I saw had a sense of what my skin, eyes, scars, joints, ears. nose cartilage, etc. should and shouldn't feel like.