• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. U

    NYT New Recognition for Chronic Fatigue

    I’m going to try to get everyone I know to watch it. Obviously, people in the media can help exponentially by bringing awareness to the masses.
  2. U

    NYT New Recognition for Chronic Fatigue

    I think it’s a great article, because we are not only fighting our bodies, but those around us that don’t understand how bad it is. Hearing, “You just need to get up and do more.”, is disheartening. It is also very bad advice.
  3. U

    How to deal with being ill mentally.

    Thank you both!
  4. U

    How to deal with being ill mentally.

    Hi, yesterday being unable to do anything(bedbound) really got to me. I've been to so many drs, been through test after test. I have been getting worse and worse with no hope given to me for improvement. The reality of it all has become overwhelming. Others in similar situations, has this...
  5. U

    Disappointing Mayo Clinic Treatment

    It only makes things worse when a world renowned hospital says to use GET and CBT. I don't know how many times I've been told, "You need to do more". If they felt what I do (I'm sure many of you, as well), they would never, ever say this. Whatever is going on with me can't be overcome by trying...
  6. U

    Hypersensitivity to noise - what's the reason?

    It could be adrenal insufficiency. You might want to get checked for it. ACTH stim test. I have Addison's and I jump out of my skin all the time. A few times a day. I feel really sick when my heart rate gets elevated, so I hate it too.
  7. U

    Worsening of symptoms in lying position

    I'm opposite. I feel even worse sitting up.
  8. U

    Does anyone remember the exact second they got sick

    It was September 20th or 21st 2009 around 6 pm. I got violently ill, assumed it was flu. Recovered to about 80-85% by spring 2010, then got worse later that year. I've had days that I've gotten much worse and never recovered throughout it. June 12, 2012 was one, and April 6 last yr.
  9. U

    Leg shaking

    The muscles in my face fasciculate when I use muscles in other parts of my body. Anyone else experience this?
  10. U

    How do you explain to others more activity is bad?

    I'm getting really frustrated with everyone telling me to do GET. I've told family and Drs it is very bad for me. They just do not believe me. They think you don't want to felt better or are just afraid if getting "tired". I was in great shape before all this. I don't understand why they won't...
  11. U

    Fatigue torture- how do you deal with it?

    I understand precisely what you're describing. Feels like my organs are shutting down. It's an incredibly dreadful feeling.
  12. U

    Really high b6. What's it mean?

    Thank you so much for the replies!
  13. U

    Really high b6. What's it mean?

    Hi, does this provide a clue to what's going on in my body? It's 4 times upper normal. Anyone else experience this? How do I lower? Thanks
  14. U

    How do you explain to others more activity is bad?

    Thanks for the replies. I have been telling Drs I think my Krebs cycle is messed up. It feels like what you would assume it would feel to not be making energy properly. I have trouble figuring out what specialists are experts on energy metabolism and mitochondrial dysfunction. People forget...
  15. U

    How do you explain to others more activity is bad?

    It is demoralizing to try to explain to someone that getting up and doing more is not helpful. It is incredibly detrimental and counterproductive for me. I was in very good shape before becoming ill. I have tried on many occasions to try to do more to appease everyone. Every single time it has...
  16. U

    Been gradually getting worse for years, huge drop last month

    Thanks. This crash has been different. I typically feel a little more stable after lying in bed without moving much at all for a few days. I'm not getting any rebound, whatsoever. I was basically bed bound before this, now I'm totally bed bound. Talking takes even more out of me. Typing this is...
  17. U

    Been gradually getting worse for years, huge drop last month

    While I have seen a plethora of Drs over the years who were skeptical of what I explain to them, the dr I was asking does believe the severity of my symptoms. He also does not think it is psychosomatic. I even saw a psychiatrist the first hospital stay this month. He doesn't think it's...
  18. U

    Been gradually getting worse for years, huge drop last month

    The Addison's and hypothyroidism are adequately medicated. I've even went up substantially on my prednisone to see if that had any positive impact. I do not have the signs of an Addisonian crash. It sounds logical this would be the case from the way I feel, but is not what is happening. I do...
  19. U

    Been gradually getting worse for years, huge drop last month

    Thanks, I do take a zinc magnesium supplement for sleep. I drink pedialyte, as it is lower in sugar than Gatorade. I haven't tried the apple cider vinegar. How much acv to water?
  20. U

    Been gradually getting worse for years, huge drop last month

    Hi, I absolutely do have Addison's. I've had acth stim test, which is the only way I'm aware of to get definite diagnosis. I do think I might have pots, also.
  21. U

    Been gradually getting worse for years, huge drop last month

    I specifically asked a dr if I had been. I thought he said I had been. Maybe I misheard him. I didn't sleep much at all in the hospital. I sleep horribly, but even worse in there.
  22. U

    Been gradually getting worse for years, huge drop last month

    I believe I was tested for mycotoxins/mold while in hospital. Have not had house checked.
  23. U

    Been gradually getting worse for years, huge drop last month

    Thanks, they did tons of tests in hospital and found no infections.
  24. U

    Been gradually getting worse for years, huge drop last month

    Hi, did anyone else have this happen? I originally got sick in sep 2009. I started to recover in early 2010, then started to go downward near the end of 2010 or early 2011. I have been fairly steadily going downhill for years, but during the last month got much, much worse. I have been in the...