• 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. Kharren

    Tips for Traveling - Lannie In the Lymelight

    I am going on a trip for the first time in 7 months. Have moderate to severe ME. Good days and not so good days, with myalgia pain and brain fog as a natural part of my days. I have read several posts about tips for traveling with ME-CFS and those are helpful. Have a wheelchair all set for both...
  2. Kharren

    Comment by 'Kharren' in 'Better. Not necesarily okay.'

    Great blog / post.....I can so relate to feeling "great' with a sudden fall from joy. I am in a deep relapse now and struggling to see the light....but remain "hopeful". Oh what a wild elusive illness this ME/CFS is.
    • Kharren
    • Blog entry comment
  3. Kharren

    Comment by 'Kharren' in 'Treatments Trialed'

    Wow you have tried a lot of different treatments. Thank you for posting.
    • Kharren
    • Blog entry comment
  4. Kharren

    What can cause extreme muscle stiffness?

    Good to know I am not the only one with muscle stiffness. I see myself now walking very differently....arms stiff neck legs etc.
  5. Kharren

    Solve ME/CFS Initiative webinar with Dr Unger

    Interesting....I do like the idea of function vs. fatigue but my functional ability is directly tied to my "fatigue" level. It seems fatigue leads and functional ability follows.
  6. Kharren

    The Lost Years

    Thank you
  7. Kharren

    Damaged by drugs

    thank you, what MD prescribes the B12 injections? Do you self admin?
  8. Kharren

    Intravenous Vitamin C - working!

    Yes this neck and shoulder pain is relentless, apparently common for "us" with ME/ CFS?
  9. Kharren

    Damaged by drugs

    Is there a good medication or intervention for myalgia pain? Ibuprofen and Tylenol heating pad and or hot baths help somewhat but not fully. The myalgia pain can be excruciating.
  10. Kharren

    The Lost Years

    Those periods of remission or for me even periods of energy levels where I can go outside and walk are glorious beyond my imagination.
  11. Kharren

    The Lost Years

    What is "self Hacking"?
  12. Kharren

    The Lost Years

    4 years a few in remission, now dancing between bed bound and couch bound. Since Oct. 2016 ONLY four months ago got hit with a major relapse exacerbation.
  13. Kharren

    Grades of CFS severity

    Thanks for this. It's a good start!! I thought I read a thread where there is a more "official" numerical rating scale for symptoms and or levels of fatigue. I am in fact searching for that now. When I go to the doctor (Chia) he is a CFS "expert" he uses a 1 - 10 scale (but my brain fog right...