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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Now what

Soo I was doing Ok. Then I crashed yesterday. I am not sure is a CFS crash but I think is POTs, But hey who knows is not like I have a Doctor to go to that can help me, the CFS specialist is 2 plane and months away for appointment, My GP just nods sympathetic and say how frustrating for him not to be able to help me.

So nowhere to turn for answers. Maybe I can go and get GP to give me a IV, that always makes me feel better.

I don't know where to go from here. But I can't be vertical, not sure how much longer they will let me work from home, not counting that I am stupid again.

I feel being vertical is a torture, I feel they are making me exercise because is how POTs gets better but they need to research how to make POTs better when you cannot push because of PEM and CFS. So to get out of POTs relapse you get a CFS relapse for Free. There is no winning w this combination (POTs and CFS). Is like when one gets better it affects the other. Or are they one and the same. I NEED ANSWERS.

Comments

Dr Cheney explains some of this here, but so far I am only 1/4 way through...hoping for some answers too!

http://www.cfids-cab.org/MESA/CFS_Dist.htm
 

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Seven7
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