Connective Tissue disorder/syndrom????

[Mysterious_girl]

In March 2005 I was diagnosed with Ehlers-Danlos Syndrom type II.  I have since gone downhill with not being able to really do much of anything.  Any amount of activity is too much, muscle weakness, nerve problems (facial, arms and legs) and severe bone pain and feet pain, I cant wear regular shoes or even socks.  I live in sandals year old (its cold in the winter months but I cant handle the pressure on my feet, it hurts too much. I am told by some, I have EDS, that is to be expected, then by others, its in your head.  I am fighting for my independence on a daily basis.  My husband drives me most places because my dexterity is very bad, to write or type for long time, hurts, to hold flatware to eat has been impossible, I go through 3-5 forks / spoons a meal because I cant hold it.  I have had every test under the sun it seems, bone scans, blood work, x-rays, CT scans, MRI's muscle biopsy with no results.  I have a stack of paperwork about 1 and 1/2 inches thick showing I am perfectly fine, but cant stand to get out of bed in the am because it hurts so bad.  I have been told by a neurologist I am a mysterious girl, hence the name.

[selmaS]

HI ...at the end of March I was also dx'd with EDS....mine is the hypermobility/hyperflexion........

There is a rheumatoid dr that specializes in EDS in Baltimore , MD....not sure if/where u live...but I plan on traveling there for an eval and then letting a local dr do followups.

There r so many diff variations on what type u can have......it is confusing.

If u would like to PM me for more info or to share info on EDS I would welcome that.

"selma"

[DancingDJ]

I don't know if this is related, but I'd like to help if I can.  I'm a 55 year old male.  For several years I had pain from amounts of pressure on my joints and bones that should not have been enough to hurt.  The severity of my problem never got nearly as bad as you describe.  A couple years ago the problem progressed to the point where I was having unexplained "pings" or pain mostly in joints and bones, but occassionally in places where there are no joints or bones.  All that a rheumatologist cold come up with was normal osteo arthritis, but I had some symptoms that seemed to be systemic, such as the same pains in symmetrical places on each side of my body.  Then last year a female friend of mine who previously had some similar symptoms as mine (but worse in intensity) told me about some nutritional supplements she found that completely solved her problem.  After taking them for several months now, the "pings" have dissappeared and I no longer notice pain from slight pressure on my joints and bones.  The supplements are powerful anti-oxidants called OPC-3 and Maximum Orac.  They are distributed by Market America in their Isotonix line.  If you try them and they help please let me know!  Best wishes for a total recovery!