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Old 07-17-2007, 07:40 AM
AUGOLDMINER AUGOLDMINER is offline
Junior Member
 
Join Date: Jan 2007
Posts: 13
15 yr Member
AUGOLDMINER AUGOLDMINER is offline
Junior Member
 
Join Date: Jan 2007
Posts: 13
15 yr Member
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I find that the article has some misconceptions in it.

I have secondary fibro from Castleman's disease a auto immune disease.

My symptoms started 14 months before the Castleman's was DXed.
about 1/3 of the people DXed with Castleman's have fibro or a fibro like disorder. (If fibro was a not real how did i know to have fibro before the Castleman's was DXed as the Castleman's was asymptomatic and only found because of a CTscan)
My castleman's doctors (oncologist) understand that i have fibro. and why. But do not treat fibro.
They leave that to my primary care doctors.(PCP)

The PCP do not know how to treat fibro or do not believe in fibro.
What little meds that i have got for my fibro were because i tricked my PCP in to giving them to me. They are not strong enough doseage yet where i could even start any exercise program. Yet most of the doctors have said that i should do a exercise program. but wont give me the meds that will let me.

I also have found that they don't have the least idea what exercise program to have me do.( i do from the internet)

Most doctors read the research on exercise for fibro but don't know how to treat the pain, or to treat the pain before they start telling people with fibro to exercise. This causes the exercises program to fail. Then they blame the patients for not doing the program.

I have been a emergency medical technician since 1978 and know what questions to ask a doctor to tell if he knows what he is talking about.

The worse thing is these are VA doctors at a VA hospital staffed by doctors from UCLA.
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