I haven't self-diagnosed myself. I've had the full battery of blood tests required for a referral to a CFS clinic done twice now. I tick the CCC boxes for a CFS/ME diagnosis.
I could go back to the doctors and try a clean sheet diagnosis, but I feel sure the result would be the same.
I don't dispute the fact that I have energy related issues in my muscles, I know I don't produce the power I would if I didn't have the illness, that's why I ride an e-bike.
I just don't understand why you can't accept what I'm saying, and always dismiss me as not having the same illness.
I could go back to the doctors and try a clean sheet diagnosis, but I feel sure the result would be the same.
I don't dispute the fact that I have energy related issues in my muscles, I know I don't produce the power I would if I didn't have the illness, that's why I ride an e-bike.
I just don't understand why you can't accept what I'm saying, and always dismiss me as not having the same illness.
No one is arguing that you got a "CFS" diagnosis in the UK. Many docs there use the Oxford definition, which does not define the illness we refer to here at PR as ME or ME/CFS. Sadly, doctors rarely do enough testing to eliminate other fatiguing illnesses before they slap a CFS label on people.
Have you been adequately tested for various forms of dysautonomia, for example? Your symptoms sound much more like dysautonomia than ME/CFS. Dysautonomia can result from a number of conditions, of which ME/CFS is one, but dysautonomia without other defining symptoms of ME/CFS is NOT ME/CFS.
This might help: Clinical Evidence of Dysautonomia
I don't dispute the fact that I have energy related issues in my muscles, I know I don't produce the power I would if I didn't have the illness, that's why I ride an e-bike.
If you don't want to accept long-term disability, then don't accept an ME/CFS diagnosis. I don't see why you want to hold onto a diagnosis which means long-term disability when the alternative is to seek out alternate diagnoses that are likely to be treatable. Wouldn't you rather be treated and get on with your life?
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