• 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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. L

    Is your worst fatigue in the morning too?

    I think this lack of oxygen can occur due to sleep apnea. I have been diagnosed several times and have tried C-pap and Bi- pap machines but they don't really help me.
  2. L

    Using manual wheelchair

    I have seen a few taxis that have the ramp on the back that folds up and down. Maybe there is something like that.
  3. L

    Polymylagia rheumatica and temporal arteritis?

    I cannot remember how I was officially diagnosed. I know my chief complaints were terrible pain in shoulders and hips and decreased function. Separate from my fibro pain, myofascial pain, OA pain, etc.
  4. L

    Polymylagia rheumatica and temporal arteritis?

    Thanks so much for the info!!!
  5. L

    Polymylagia rheumatica and temporal arteritis?

    I have been diagnosed with polymyalgia rheumatica and am concerned about the possible progression to temporal arteritis or giant cell arteritis. I have seen 2 rheumatologist since being diagnosed by my old rheumy/pain doctor. I am taking small amounts of prednisone but docs are scared of the...
  6. L

    Is your worst fatigue in the morning too?

    Thanks for the info!!!
  7. L

    Article : Chronic Illness Had Me Stuck in Grief. My E-Bike Helped Me Find Joy Again.

    Wonderful!!! I have a recumbent tricycle that my family bought for me and I can go up and down my street as long as my husband is close by. We live in a lovely street with a dead end and little traffic.
  8. L

    PAIN!!!

    Thanks for the reply! I have used massage, trigger point injections, acupuncture,heating pads, ice, aspirin, advil, tylenol, etc etc, to no avail. I have also had facet injections in my lower back for disc degeneration, and am trying to get through my insurer's mandated two times per week for...
  9. L

    PAIN!!!

    Thanks for all the advice! I have been unable to find any doctor for pain and am taking a break from trying to find someone because I need to go to PT twice a week so my insurance will cover me seeing a doctor to do an epidural for my neck...
  10. L

    PAIN!!!

    someone told me to take one Aleve and one Tylenol together. Doesn't work for me, but I was on morphine sulfate and Percocet for more than a dozen years which enabled me to at least function...My rheumatologist/pain doc is no longer available, and docs seem too afraid to prescribe opioids.... So...
  11. L

    PAIN!!!

    Sounds good to me!!
  12. L

    PAIN!!!

    Thanks for the replies!
  13. L

    PAIN!!!

    Is there anyone here who has pain that is unrelenting and can get no help for it? I understand docs are at the mercy of the government, but personally, I am suffering! I see no help coming soon, and am scared for the many years ahead of living with no relief!
  14. L

    Will You Be Getting the Covid Vaccine?

    I got both of mine, moderna, and the second dose made me more tired, more foggy and increased my pain, but nothing like what I was preparing for because of my autoimmunity issues.
  15. L

    I hate being in pain!!

    Good luck at your hearing!
  16. L

    I hate being in pain!!

    Thanks..just got some this morning...Will see what happens!
  17. L

    I hate being in pain!!

    I had my hubby order Aleve for me, so will give it a go! Thanks again!!
  18. L

    I hate being in pain!!

    Thanks for the info!!! Lisa
  19. L

    I hate being in pain!!

    Thanks for the encouragement! I really need it now! Lisa
  20. L

    I hate being in pain!!

    Thanks for the rep!y! I too am wary of meds that mess with my unstable equilibrium! Have had adverse reactions to too many meds with no help from those who prescribed them! Take good care, Lisa
  21. L

    I hate being in pain!!

    I have heard lots about low dose nalthrexone, but am not knowledgeable. Is it a prescription? I will try to research it as soon as I am mentally able. Thanks for the reply! everyone here is so helpful and it is much appreciated! I am really burnt out trying to figure things out by myself! Lisa
  22. L

    I hate being in pain!!

    Thanks! Will read and check it out. It is much appreciated!!!Lisa
  23. L

    I hate being in pain!!

    Thanks for all help! Will check out website and kratom! Lisa
  24. L

    I hate being in pain!!

    Thanks!! Will try Aleve because the gabapentin and antidepressants I refuse to take are useless. One rheumatologist out me on cymbalta, which I tried years ago, and this time after 3 days I was zombie-like. The doctors reply was to keep trying g for two weeks and if it did not help he would try...
  25. L

    I hate being in pain!!

    Sorry to hear you are in the same boat as me! I hate that the government thinks it can rule my health care.... And it does. I have spoken to many people in government, DEA, etc and sent many letters to all politicians in my state. I even wrote, with my husband's help an essay called " the other...
  26. L

    I hate being in pain!!

    Why does the government have such a say in my medical decisions? I cannot seem to find any pain doctor that is not intimidated by the DEA, etc. I am tired of being seen as just another junkie/addict, etc. My pain is very, very real, and it just continues to get worse as I grow older. My...
  27. L

    What are the challenges of using physical books?

    I love to read and learned to read at an early age, but I seem to be having a pretty bad flare, and am having trouble reading for any length of time.
  28. L

    What are the challenges of using physical books?

    I love real books! Because of the weight, I have a pillow shaped like a pyramid that holds books, my kindle, etc.
  29. L

    Covid vaccine. Anyone not having it?

    I am scared because of my immune system disorders, but am more scared of covid! I barely survived West Nile meningoencephalitis and have been advised by my docs to get it.
  30. L

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Thanks for the reply! Actually surgery is a last resort for me....same for my herniated discs and the rest of the problems that I am trying to deal with!