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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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  1. J

    Comment by 'jshu43' in 'Normal Things That Flare Me Up'

    Thanks Carrigon for your words. It actually feels good to hear someone who knows exactly what I'm going through. It always blows my mind how I can feel okay after I've done a few things and then the next day or two I'm so sick I can't get up to eat. I can drive a car - here in Texas it's a...
    • jshu43
    • Blog entry comment
  2. J

    "So you're really faking it?!"

    Thanks for the support! CFS is a very isolating disease, but there are really quite a lot of us in similar situations. It's nice to get a different perspective!
  3. J

    Poll: Has raising the head of your bed helped your OI/POTS/NHM?

    I recently bought a bed that elevates the head and knee areas. I have found that this is particularly helpful when waking up. I raise it a few inches at a time until I get adjusted to it. When I am almost fully sitting, then I can make a transition to walking. It takes me about an hour, but...
  4. J

    "So you're really faking it?!"

    I just got back from going to a funeral out of town. I had to drive over an hour each way and spent the night with my friend whose son in law had died. It was very hard on me, but it was one of my best friends and goodness knows, I don't have too many of those left. I didn't go to the...
  5. J

    Can't get my head around the exercise thing

    I haven't been tested for B12 levels. My doctor specializes in CFS & AIDS, but she never has mentioned testing for vitamin levels. (I always have low D, so we do test that) Is there certain things to be tested for? How do I go about finding what kind of regimen to get on? I think I have the...
  6. J

    Can't get my head around the exercise thing

    Yes, I don't get mad at people for not "getting" CFS, as I still have a hard time myself with it. I hate that you have crashes, but it is nice to know that I'm not an island. How much exercise are you able to do if any?
  7. J

    Can't get my head around the exercise thing

    I am getting B12 shots and that may help a bit. I need to get some more CoQ10, because I did feel that helped. I'm taking a liquid multivitamin. I think I may have taken D Ribose but not sure about carnetine. I've spent so much money that I don't have on supplements that didn't do anything...
  8. J

    Can't get my head around the exercise thing

    Thanks Serenity and Sasha for your input. I really should get on the boards more. Very interesting study by Dr. Light - that does help. I think visual learning is the best way for me to understand things nowadays. I'm in a bit of a relapse right now, so of course it's all the more...
  9. J

    Can't get my head around the exercise thing

    Thanks for the advice. I go through periods I guess everyone goes through. I stop exercising because I know I just can't do anything. But then after awhile I just can't believe I can't do something. I know that I am sick, but it's hard when no one (outside boards like this and my doctor)...
  10. J

    Can't get my head around the exercise thing

    I've had CFS for 16 years. Even after this length of time, I still am surprised and frustrated with my response to exercise. What I think is so strange is how when I do the exercise, it's actually enjoyable. I used to be a dancer, so it feels great to stretch and move around. But I will do 5...
  11. J

    anti-androgen med seem to be helping me: spironolactone

    I take spironolactone for alopecia and it also helps my high blood pressure - which is what I think it is mostly prescribed for. It does help with the alopecia for anyone that needs help in that area. I have not noticed any help with CFS. You need to monitor your kidneys while taking it.
  12. J

    Obama setting up a temporary insurance pool for uninsured with medical problems

    I am on a High Risk Pool for Texas already. It is very expensive. Is this going to be a new High Risk Pool? Do you know any info on whether people on those programs would I have to get off of their High Risk Pool for six months to be able to get on it?