Guest guest Posted May 13, 2004 Report Share Posted May 13, 2004 In a message dated 5/13/04 12:33:21 AM, Barb writes > Ideally, for EDS you want a Mutual doctor, but in my case I tend to go for > the Consumer doctor because I find they need to rely on my knowledge of EDS > to know what to do. > Amen. My pain doc's a mutual, but he's the only one I've had the pleasure of using on a regular basis...everyone else just assumes I know more about EDS than they....and I'm really kind of sick of it. They can't do anything to help (they really can't -- the solutions available would most likely leave me worse off) or they refuse to even try. No one seems to understand how complicated the effects can be; for instance, when they found the peripheral sensory nerve deficits, I was the one who figured out first of all that I had ulnar difficulties and needed testing, and second that the damage is probably being caused by the almost-continual strain placed on them by shoulders (and hips) separating with almost every motion... to this day, no one has been able to explain how I should deal with this. Normally, you'd try to avoid any pressure at all on elbows; but every position that avoids my elbows leaves my shoulders separated from the weight of my arms. So which is more important? And this is one fairly trivial (!) contradiction... I'd love to have a doctor who could actually look at me. I think they literally don't know what to do with me, that I'm so fundamentally flawed as to be beyond their capabilities to understand, much less to treat. Everything that would normally be done for one symptom is evidently contra-indicated by other symptoms. My " primary " can treat everything BUT my EDS problems; I'm too complicated a patient for ANY doctor in the county health system. And I haven't been able to find a private one that's any better... Don't get me wrong, I feel relatively great, psych-wise...better than in many, many years, but I'm still, well, fundamentally untreated except for what I do to help myself. Acupressure has virtually eliminated my migraines, which is more in 3 months than 3 years of medical treatment which hasn't improved one symptom. I simply don't know what to do currently. I might as well have been told I'm terminal; that's the kind of treatment I get, put out the little fires and wait for the structure to collapse on its own... Really, I'm not depressed. I'm angry...and a little bit frightened, maybe. I feel like I did prom night, when I fell asleep towards morning and went sailing off the road to land about 2 feet away from a gas pump, and woke up to find people standing around the wreck -- and I might as well have been alien, because not one of the spectators would help me at all... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2004 Report Share Posted May 13, 2004 > Really, I'm not depressed. I'm angry...and a little bit frightened, maybe. I > feel like I did prom night, when I fell asleep towards morning and went > sailing off the road to land about 2 feet away from a gas pump, and woke up to find > people standing around the wreck -- and I might as well have been alien, > because not one of the spectators would help me at all... YIKES!!!!! Well, one thing is different now vs. then. You DO have help - you have all of us. -Barb Quote Link to comment Share on other sites More sharing options...
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