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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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What's worse than CFS/ME

Messages
84
Location
Tennessee
At this point with atypical CFS?? or secondary CFS, is really not knowing what mystery illness my body possesses. Worse than a disease itself, is not having a definite diagnosis. I don't know what direction to take, what medicines to try, what supplements to buy, what the hell to do. I've carried my lifeless body to so many doctor's offices, (13) I can't stomach the thought of seeing another trained professional (sarcasim) who will give me another round of useless and expensive tests and tell me I am normal...Yippeee.... So, I guess my point to my rambling is, I feel hopeless and like I am stumbling in the dark and I want to scream....Can't somebody please tell me what is happening to my once healthy body....

Thanks for being here....
Lee Ann
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
:hug::hug::hug:

Know the feeling. It's not much of an upside, but at least we're all stumbling in the dark together. I'd scream, too, if I had the energy.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
At this point with atypical CFS?? or secondary CFS, is really not knowing what mystery illness my body possesses. Worse than a disease itself, is not having a definite diagnosis. I don't know what direction to take, what medicines to try, what supplements to buy, what the hell to do. I've carried my lifeless body to so many doctor's offices, (13) I can't stomach the thought of seeing another trained professional (sarcasim) who will give me another round of useless and expensive tests and tell me I am normal...Yippeee.... So, I guess my point to my rambling is, I feel hopeless and like I am stumbling in the dark and I want to scream....Can't somebody please tell me what is happening to my once healthy body....

Thanks for being here....
Lee Ann

Could you go see Dr. Klimas? You are closer than mysefl, and I am considering it.

GG

PS How about the ACAM website for a dr? or Functional Medicine: http://www.yourmedicaldetective.com/public/department138.cfm