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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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3 1/2 months in.

Still progressing through Dr appointments. Some more tests from primary Dr being done, but a referral to Rheumatologist is likely coming. I am here at PR because a few key symptoms : exercise intolerance ( plus simple things seem hard, steps), regular muscle aches from minimal activity, hr all over the place ( beta blocker helps), sleep issues, alcohol intolerance, and the fact I remember the exactly second this started.

I miss physical activity greatly. Video games have helped Work is going relatively well. I function pretty well overall as long as I get my sleep. Work is flexible and I am able to work at home.

I wonder if I am getting worse, I can't really tell. If it is slow, it would be hard to notice. Right now, after a nice weekend and a hot shower, I feel pretty decent now.

What changes have I made so far? Not much, except quitting alcohol ( mostly) and avoiding exercise. What changes will I make? I read a lot and think about things that will help, but nothing definite yet.

Why post a blog, not sure! It seems like a nice feature so why not! We'll see if it I keep it up, but figure it can be a nice easy to follow account of what happens.

Comments

I wish you well @markii
It's a good idea to post a blog to keep an account of what happens, what you do, and how things go. Good luck :)
 
It can be helpful to keep a journal for a couple of weeks to have a record of various symptoms and what they rate out of 10.. so you can look back on it in a few months and know if you are stable or getting worst or improvement. Sometimes changes can be slow and missed.
 

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markii
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