• 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. maybe some day

    Why i don't think there will be a cure for ME

    I agree/sorta disagree.... I no longer get my hopes up. All the new research to me is just lip service. Nothing concrete. A cure? no, but I do believe at some point there will be treatment to lower the symptoms and inflammation. The answers are there, but its like peeling back an onion.
  2. maybe some day

    Need some help, incredibly ill in waking hours

    @lenora Thank you 🙏
  3. maybe some day

    Need some help, incredibly ill in waking hours

    @Tammy Thank you for your thoughts. I did try that supplement you mentioned, unfortunately it didn't seem to do much. I've got to be one of those rare cases where nothing works
  4. maybe some day

    Need some help, incredibly ill in waking hours

    @Mary Thank you, I'll look into this. I did take 1200 mg of Tylenol before I went to bed it works for 8 hours which helped out quite a bit
  5. maybe some day

    Need some help, incredibly ill in waking hours

    Thank you, do you recommend a specific brand of test, and are there cortisol supplements? This really has me worried as it's quite upsetting mentally and physically. It always happens early in the morning between 5:00 and 6:00, regardless wherever I sleep. at home or on the road
  6. maybe some day

    Need some help, incredibly ill in waking hours

    no I haven't.
  7. maybe some day

    Need some help, incredibly ill in waking hours

    Im afraid of the mornings. Iam in incredibly ill upon waking. Its like the flu feeling times 100. It wears off a bit as the morning goes. This happens when I sleep at other places. It has gotten significantly worse over the past month.
  8. maybe some day

    Fall/winter: Seasonal Affective Disorder: I love it, I hate it

    Mine hits me anywhere from August to october. It really gets bad when turn the clock back an hour. It's also a bit of a trigger that the holidays are around the corner, I used to love them especially thanksgiving. Now I just want to get through it.
  9. maybe some day

    Unbearable restlessness and burning of nerves

    Yes I feel anxiety has a huge part of it. In fact I emailed my doctor about some solutions. I don't like script meds, but willing to take some to take the edge off
  10. maybe some day

    Unbearable restlessness and burning of nerves

    I'm in the same boat, about 1am it hits me. It's like I'm ready to start a race. Pretty messed up when good sleep is needed.
  11. maybe some day

    Increased risks of cancer and autoimmune disease among the first-degree relatives of patients with myalgic encephalomyelitis... (Moslehi et al, 2022)

    Some how cancer doesn't surprise me.
  12. maybe some day

    Bengaluru woman goes to Delhi HC to stop friend’s euthanasia trip to Europe (ME/CFS)

    She needs to walk a mile in his shoes.
  13. maybe some day

    Ron Davis Update

    @Janet Dafoe Thank you for all your updates and time. Im sure your spread thin with the care of Whitney and other daily challenges. We sincerely appreciate you here on PR to help us all.
  14. maybe some day

    Rob Phair Youtube video

    Good stuff
  15. maybe some day

    Has there been any news from Dr. Davis or others?

    @rebecca1995 I agree. We are all yearning for any positive news to fill any void of hope. I think we all can respect everything hes done, on top of caring for his son and of course his very own well being. He has alot of shoes to fill, and could easily walk away from all of us.
  16. maybe some day

    Has there been any news from Dr. Davis or others?

    @GlassCannonLife , all good points. I believe Robert Phair who came up with the metabolic trap was one of Rons colleagues.
  17. maybe some day

    Has there been any news from Dr. Davis or others?

    I dont think Ive ever heard a more disappointing update.
  18. maybe some day

    Has there been any news from Dr. Davis or others?

    we should get an update on may 31st.
  19. maybe some day

    Despair

    @Quilp, truly spoken. 👍
  20. maybe some day

    Poll: do you get symptoms similar to an "MS Hug"?

    Yes, i get that off and on lately. I had no idea there was a name for it. I did have a chest injury in the past too
  21. maybe some day

    In Memory of Greeneagledown

    @snooze Very sorry to hear about your loss, and thank you for letting us know. With much respect and honor to him, from all of us.
  22. maybe some day

    Less likely to recover after three years? Is this true?

    Hard to say, as each person is different. After 5 years, I was in near full remission, then crashed 2 years after that. It's very likely you will improve over time. Full recovery is anyone's guess. Wish I had a better answer for you. Personally I've known folks that cycle up and down, but...
  23. maybe some day

    Has anyone read "The Medical Medium"

    Good to hear it continues to help you :)
  24. maybe some day

    Need some tips

    Not sure where your located, but check out the instacart app for groceries. Shop online, and have them delivered. Many local stores participate . You do pay more for some items, but if time and health are at a premium, then its worth it. Quick meals, like a packaged salad.. grab a bottle of...
  25. maybe some day

    Graham McPhee (@Graham)

    I remember Graham as being sincere, with friendly posts and thoughtful of others. He mentioned that he wasnt going to post much, if at all, around 2018. In peace Graham
  26. maybe some day

    Moving to the U.S. 90% likely, where would you live?

    I live less than an hour from the hot bed of research in the Bay area in california. I'm no better off if I lived in a small town in the midwest. The research is here, but it won't get to me any quicker than anybody else The fact is, healthcare is unaffordable. If you can work, you'll likely...
  27. maybe some day

    R.I.P. Michaela

    @Martin aka paused||M.E. Thank you for sharing. I did some more reading about her. Such a vibrant woman, and such a loss to her family and friends. 🙏
  28. maybe some day

    Famous (and sort of famous) ME/CFS sufferers

    This may have been posted, but.. https://www.msn.com/en-au/sport/more-sports/casey-stoner-reveals-extreme-health-battle/ar-BB1aei1Y
  29. maybe some day

    Scared to get covid vaccine

    I still haven't decided. I stopped getting my tetanus booster because I get extremely sick for a day or so.
  30. maybe some day

    Has anyone made significant improvement?

    Yes. I've been sick an extreme amount of time. Over the years I've cycled from feeling of certain death to spending the afternoons on my motorcycle, and living 80% of normal health for quite some time. Could never do any cardio tho. The last 4 or so years have been utter shit. But near full...