• Welcome to Phoenix Rising!

    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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Search results

  1. K

    Dysautonomia, Pyroluria, maybe both ? 23andme results

    I thought you could have a genetic test for Marfan's syndrome that was definite? I'm wondering about that too
  2. K

    Asking for advice to prep for TTT for best outcome

    I have been reading up on this too. Check with them in advance that They will stop the test if you feel too bad. There are one or two places that apparently still go on until you faint and this is ridiculous. That is the first time I have ever heard of them saying not to drink or eat before...
  3. K

    Getting reliable tests

    My main problem is my muscles are all sore When I wake up it feels like I like I did a workout yesterday Even if I didn't do any exercise. And if I go for a run then I'm really sick
  4. K

    Best Labs and testing procedure for Lyme?

    I want to get tested for this one too. But I heard some people get tested a few times and it is negative and then finally they get a positive Very complicated Studying up.
  5. K

    Getting reliable tests

    And what do they do about it if they are not?
  6. K

    Getting reliable tests

    Thank you how does it help to know what your cortisol level is over 24 hours?
  7. K

    Getting reliable tests

    What does saliva testing show you how does that help?
  8. K

    Can you have POTS without the heart rate going up a lot?

    I will have to lie down and measure it and time it then. This time I just did it once. I will write it all down. Standing up for 10 minutes now don't think I would like that either. I will see how I go with a stopwatch. Yeah most the time I have to lie down and I feel like shit when I...
  9. K

    Can you have POTS without the heart rate going up a lot?

    Holy Holy crap. I just measured mine and it is 68 when I lie down and when I Stand-up goes up to 110. ! I'm gonna get this test.
  10. K

    The Importance of Orthostatic Intolerance in the Chronic Fatigue Syndrome

    It is a lot to take in. Complicated. But I do get very cold feet and hands that go blue sometimes. But not much blotchiness I don't think. I will look out for that. And will start measuring my pulse. Then go to the doctor and get tested. Very interesting though finally To hear some...
  11. K

    Dysautonomia, Pyroluria, maybe both ? 23andme results

    Can men get Pyroles too?
  12. K

    BP and HR monitors

    Thanks I can't seem to open it. Is this something that will help with pots testing? I'm going to see my doctor about that soon.
  13. K

    POTS Associated with Significant Symptoms & Impairment -- BMJ article & pop press response

    What is the test for Potts please? Is it a blood test; can my doctor do it?