• 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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  1. Mollymolly

    Dr Enlander vs Dr Frid

    No semi retirement
  2. Mollymolly

    Do you struggle with post-exertional malaise? How do you deal with it?

    i crash very often,physically and mentally,how do you cope, do you guys take any medication?
  3. Mollymolly

    How would you describe your brain fog?

    Thank you
  4. Mollymolly

    How would you describe your brain fog?

    Thank you for responding, Yes I see , I also experience lack of focus. And it is difficult to find words or follow conversation, feels like if somebody start talking and say Hi how are you ?I have enough I don't have the mental strength to continue. , I am searching for words but I am only...
  5. Mollymolly

    How would you describe your brain fog?

    I don't know how to describe, light headed, head ache and dizziness, thing don't make sense ..what is it like for you?
  6. Mollymolly

    Muscle pain

    I have muscles pain in my legs ,twitching, cramping and little swollen from inflammation, walking stair is painful I feel like I ran a marathon every day , I do take vimivo- for inflammation and also pain killers helped a lot , just starded the med.
  7. Mollymolly

    Big thinking about trip to Brussels after unfunctional treatment CFS/Lyme in Czech

    So you have Lyme , you know people with Lyme in US go to extreme measures, they take out lymph nodes ; change diet; medications it is chronic;
  8. Mollymolly

    Do you take anything for POTS ?

    Thank you all very helpfull
  9. Mollymolly

    Do you take anything for POTS ?

    I may have POTS but don't know how to deal with it ,any suggestion will be appreciated?
  10. Mollymolly

    Big thinking about trip to Brussels after unfunctional treatment CFS/Lyme in Czech

    Your testing is European right? So is it active or not now?, me too I dint know it and I have same symptoms like you now, it is horrible feeling of pain fatigue, and weaknesses Also I understand chech
  11. Mollymolly

    Big thinking about trip to Brussels after unfunctional treatment CFS/Lyme in Czech

    Yes was asking Martin. , when I hade EBV I did not know it spend months in bed , but was never treated
  12. Mollymolly

    Big thinking about trip to Brussels after unfunctional treatment CFS/Lyme in Czech

    Hi,I myself have to sit or better lay down mots of the day ,because my legs feel heavy and very painful ad my back is killing me it is unbearable pain and when I get up I am dizzy and very weak to me it is like dying pain , I don't walk much but if I have to I use a cane which I am embarrassed...
  13. Mollymolly

    Can M.E predispose a once healthy brain to bad hard to treat depression?

    Yes you right but if you don't have diagnosis of ME you are just seen as depressed person that has nothing to be depressed about...., if you have illness and you are depressed it is allowed do to circumstances...
  14. Mollymolly

    Pain help! At the end of my rope

    I also have muscle pain and neck shoulder arms and back , my hair hurts dam it and it is not normal pain it is constantly hurting and won't stop my husband don't like dirty dishes or house too so I try to keep up with it as much as I can but with tears in my face and then we don't talk because I...
  15. Mollymolly

    Jen Brea talking to GMT news

    Positive HHV -6 is considered as one of the indicators or a marker for diagnosis of ME/CFS, that is what my dr.sad
  16. Mollymolly

    How were you diagnosed with ME/CFS ?

    Yes it is she is my best fiend and sits with me all day long without barking , she is very sweet, Her name is Molly
  17. Mollymolly

    How were you diagnosed with ME/CFS ?

    I want the one from movie Passangers
  18. Mollymolly

    Anybody on dr. Enlander protocol and how long ?

    Now is hepapressin shot
  19. Mollymolly

    How were you diagnosed with ME/CFS ?

    Great for beating cancer I feel that if dr. Say you have a cancer which is sad news they know what to do , medication surgery pain med and so on but with ME I feel like I have to be my own dr. And keep up with blood work and who to see next and where else they will send you and there is no...
  20. Mollymolly

    Anybody on dr. Enlander protocol and how long ?

    I am not sure I read some posts...possibly her own protocol , not sure as I am not her patient
  21. Mollymolly

    How were you diagnosed with ME/CFS ?

    I a sorry to hear abou your cancer..hope you feel better..thank you for respond
  22. Mollymolly

    Anybody on dr. Enlander protocol and how long ?

    Yes I did , but don't have the energy to go every week for an injection ..(
  23. Mollymolly

    How were you diagnosed with ME/CFS ?

    Want to connect with others who are on the journey of diagnosis , I do have positive EBV and HHV- 6 markers, and inflammation , weakness, brain fog, fatigue... tell you story
  24. Mollymolly

    Jen Brea talking to GMT news

    Yes she did say Valtrex months ago so I am assuming she is still on it I got mine just now with 9 more refill so will be on it for at least 9 months...
  25. Mollymolly

    Jen Brea talking to GMT news

    She dint say Valtrex but she did say she is on antiviral med an Valtex is antiviral.
  26. Mollymolly

    Anybody on dr. Enlander protocol and how long ?

    I just started but was hopping to connect with somebody who is also seeing some specialist in NYC. Thank you
  27. Mollymolly

    Comment by 'Mollymolly' in 'Anybody experiencing muscle weakness ?'

    Thank you , did not know how to post it , very much appreciated but what is Pem?
  28. Mollymolly

    anyone have burning, aching legs?

    Yes pain and burning legs also back ..:(
  29. Mollymolly

    "Unrest" now on iTunes - review

    It only comes across well if the one not suffering is open to it, I know that because I have seen it with my husband and I am greatlull that he was willing to see it and the film was everything me or all of us ,as I am in process of diagnosis and also already on medications .... so people who...
  30. Mollymolly

    Anybody on dr. Enlander protocol for Cfs and how long?

    jus started protocol don't know what to think ,