• 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. N

    Can you go from severe to moderate.

    @Jesse2233 hey I'm not doing to great I seem to be declining but I'm holding on tight. Things are looking really promising with research so maybe I won't be like this the rest of my life.
  2. N

    BBC: Research in Norwich could offer ME/CFS breakthrough

    They are evil drug company's, even if they had a cure they wouldn't sell it. Because then after everyone is cured there is no money left to be made. The best chance we have to a cure is Ron Davis... bless that beautiful man and his family @Rose49
  3. N

    BBC: Research in Norwich could offer ME/CFS breakthrough

    Didn't this treatment make Whitney worse? As disabled as I am I will wait for dr Davis to come out with his bio marker and treatment. I don't trust this crap
  4. N

    Can you go from severe to moderate.

    Just got diagnosed and I had another full blood work draw and x rays of my head. The prognoses isn't good
  5. N

    Can you go from severe to moderate.

    I was diagnosed with severe cfs. I'm completely bedridden and getting weaker by the day. Is my life completely over or is there a chance I could make some what of a recovery? I'm thinking so much about death because I don't want to lay in my room every single day for years and years. Please is...
  6. N

    Can you go from severe to moderate.

    @K22 really you actually know people that started out severe and got to be more functional a couples years down?
  7. N

    Can you go from severe to moderate.

    So I didn't even realize until a couple days ago that most people on here are mild/moderate people considering I'm 98% bedridden. How many people are like me that are bedridden that can't really tolerate the tv?
  8. N

    Can you go from severe to moderate.

    I have seen a doctor I did it in the very beginning got full blood work, stool sample, urine test. Everything came back fine. I can't get to a cfs doctor but I am going to try and see if I can have an appointment through Skype or the phone but I have gotten the tests
  9. N

    Can you go from severe to moderate.

    @hellytheelephant can I ask what your symptoms were? Were you too weak to use your muscles? That's how it's happening for me I'm slowly losing function of my muscles, they are becoming weaker and weaker. I'm just wondering what your story is because it doesn't seem like mine is like anyone...
  10. N

    Can you go from severe to moderate.

    Im just wondering since I started out so bad basically started from severe but if not developed it in the last couple of months. So can someone go from severe to moderate is it possible when you start out so bad? Has anyone known anyone that has improved from being bedridden.
  11. N

    Declining rapidly.

    Im so sick today that I can't even move from my bed, everything just feels like horrible. In the last 3 months I went from moderate to severe to very severe. I wouldn't even be able to brush my own teeth right now if I had too. I'm so scared I can't do this anymore. I will be completely helpless...
  12. N

    I'm addicted to my laptop

    @Cheesus Do you think that being on the computer/phone all day looking things up really can take a lot out of you? What do you do if you're not doing that. Because I'm bed bound too and I'm finding it difficult to do anything besides look up all different things m e related.
  13. N

    OMF and remission?

    @purrsian thank you for that very good very thoughtful post. I really hope they find a treatment or a cure, I personally believe that since this is such an odd disease that once they figure this out that it will be a full cure. I don't think there is any other illness out there that is like this...
  14. N

    OMF and remission?

    @Sasha were you bedbound right in the beginning? I'm so afraid of not just not getting better but getting worse since I started off so bad. But trust me I have read up on so much of this illness within the last couple of weeks which is mostly the reason I am so scared. I have already lost so...
  15. N

    OMF and remission?

    Well that's better than nothing at all, or getting worse for that matter.
  16. N

    Can stress an anxiety cause Pem.

    I was thinking ever since I got ill I have been having panic attacks and just so scared and stressed from the symptoms and unknown. Is it possible that this can be just as draining as excersizing? From what I remember from getting bad anxiety or stress before I got ill I could be more tired then...
  17. N

    Who are the 10% that get better

    Thank you, I pretty much stopped believing in god after getting this and seeing what it has done to others as well. I'm really just scared that I am worse off than a lot of other people. They way mine came on was so sudden that I feel like I will either be 100% or 0% like I currently am. But...
  18. N

    OMF and remission?

    So I was reading somewhere on the OMF website that Ron Davis's intern or someone working with him got ill the same time his son did, but that he had gotten better. He also talked about getting other people who have gotten better from this disease to maybe understand what they did to help...
  19. N

    Does anyone remember the exact second they got sick

    And yes before I got sick I was under a year of what I would like to call some of the worst stress any human could have been under. I was in chronic pain in my larynx (voice box) had acid reflux coming all the way up and burning my vocal cords. Was in misery everyday. Took way to many pill the...
  20. N

    Does anyone remember the exact second they got sick

    So he Never had a virus or something he just got fatigued after the onset? To me limitations sound wonderful right now I'm afraid I'm never going to leave my bed or house and never be able to have friends over. Or worse not be able to talk or communicate. See I wonder about people like me and...
  21. N

    Does anyone not have pain but just weakness?

    Your son sounds a lot like me,, so we're all his symtoms immediate? Also how long has he had this sickness? @UKmum
  22. N

    Does anyone remember the exact second they got sick

    Thank you @Old Bones so have you always been severe, what are you symtoms and it's funny you mentioned you get Pem from cognitive efforts like concentrating because all I have been doing for the past weeks is looking things up, I probably spend at least 10 hours a day looking up what ever I can...
  23. N

    Does anyone remember the exact second they got sick

    So did your symptoms start off severe would you say and got better? And so you never had a virus or got sick just went straight to cfs? I'm trying to find someone who is most like me with the situation. I just want to know how things progressed for you, please don't tell me you are severly I'll?
  24. N

    Does anyone remember the exact second they got sick

    I'm not just sure I have m.e, I think I have a severe case of it in almost 3 months. Also all I have been doing since I fell ill was saying in bed all day everyday unless to get food or something. So this whole pacing thing in the very beginning does apply because I can't pace anymore than I...
  25. N

    Does anyone remember the exact second they got sick

    What is your condition now? Have you went down hill from where you were or do you think you have gotten a little bit better? @valentinelynx
  26. N

    Does anyone remember the exact second they got sick

    I'm scared that since I can't find anyone like me on here that I am going to become very severe case, since this whole thing is very new @purrsian
  27. N

    Does anyone remember the exact second they got sick

    I remember waking up feeling fine, went to take a shower came out and have been sick ever since. Anyone else remember the exact moment, or our most people's brought on by having a virus first?
  28. N

    Does anyone not have pain but just weakness?

    just curious if anyone that's like me only experiences weakness and not pain
  29. N

    Mitochondrial and Energy Metabolism Dysfunction in ME/CFS — Myhill, Booth and McLaren-Howard Papers

    Anything you doing for unrefreshioned sleep or muscle weakness?
  30. N

    Mitochondrial and Energy Metabolism Dysfunction in ME/CFS — Myhill, Booth and McLaren-Howard Papers

    Then wouldn't an aids cocktail work for us?