Joint Hypermobility Syndrome?
NSA Supporter
Is anybody out there? or in here?
Falling Apart in PA
sharriso
and I have been diagnosed with this condition, but it's only been
recently that we finally found a doctor who could tell us whats going
on! We all have been affected in our back, and all joints (including
feet and hands). Along with this, my 2 daughters have anxiety
disorders, which are more common in people with HMS. We also have
gastrointestinal issues which the doctor said results from the lack of
support for the internal organs as well. It was fantastic to have
someone sit down and tell us exactly what we have been trying to tell
the doctors for years -- and not tell us we are crazy!
We all have difficulty sleeping. For one of my daughters, it's due to
restless leg syndrome. For me, it is sleep apena. Of course, this is
along with the pain and difficulty getting comfortable. I was on
Trazedone for several years, but have recently found (after a car
accident) that I sleep much better with a dose of Flexeril and Voltaren
XR everyday. Without these, I end up in a great deal more pain.
My hands have started to hurt badly - mostly in the thumb joint. I
have been given a thumb brace and some exercises, but they don't seem
to help much. I have gotten voice control software for my computer and
am looking for other aids to simplfy tasks - i.e. I bought a kitchen
aid mixer to help with cooking. I have also found some wonderful cushy
fat pens for writing - of which I do very little as it hurts too bad.
Shoes are another issue. I have to wear shoes all the time, or my feet
hurt really bad. I have orthotics that I am going to have adjusted to
see if that will help with the knee & hip pain. They really only fit
into good quality sneakers, so wearing other shoes or dressing up is an
issue.
I would love to hear what other people have found to be helpful. I
like the way the doctor described it - we have to "more buff" than the
average individual to keep our muscles and ligaments in shape to
support the joints and organs in the body.
Ranger
http://www.hypermobility.org/ http://www.ednf.org/ (EDS type III)
Both above sites have moderated message boards with tons of posts - lots of
reading!
It seems the hard part is finding the doctor!
No one has been posting here, but if you catch this reply I will get back to
you. I have not been diagnosed with HMS, but have struggled with all the
familar issues since I was a teen ( now 48), and started researching in
April when I was down with a back injury. The Brighton Criteria sounds like
my medical history.... Been back to work since May, but having a bad time.
Spinal fusion has been recommended; I'm going in for a discogram next
tuesday - starting to see nerve damage, so have to do something, I guess.
rick
"sharriso" <ap...@nwlink.com> wrote in message
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Ranger
Rick
"sharriso" <ap...@nwlink.com> wrote in message
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Sandy L
board. There is also http://www.ehlers-danlos.org/messageboard/index.php.
Sharissa: I came across something recently suggesting that iron deficiency
could cause restless legs. If your daughter has heavy periods or is anemic,
iron supplements (which can be purchased without prescription) might help.
Nicnet
Didnt knwo it was here.
anyways. YOOOHOOOOOOOOO hi sandy.
Nicnet
"Sandy L" <hlm...@mindspring.com> wrote in message
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