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    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. KellyJoanne

    Update on hospital visit.

    I'm going back to the doctors today. My hair is starting to fall out a lot more and I've got sores in my mouth and nose again :( I did mention Ehlers Danlos and he said straight off that I didn't have it.
  2. KellyJoanne

    Update on hospital visit.

    He said there is no connective tissue disorder or inflammatory arthritis in the letter. He just seemed to want to pin it to CFS the second I mentioned having an appointment at the clinic. It was almost like "Great, now I can pin it to that and get her out the door asap"
  3. KellyJoanne

    Update on hospital visit.

    Anybody able to interpret this for me?
  4. KellyJoanne

    Update on hospital visit.

    He did rush me in and out again. He pulled my legs and arms about and said I'm quite hyper mobile in my wrists and hips. He said that 'many dancers are hypermobile' and didn't explain why they are. I haven't really been affected by asthma since I was about 13. I'm 20 now and I'd actually go as...
  5. KellyJoanne

    Update on hospital visit.

    I finally had my rheumatology appointment which I've waited for, for months. I just got a letter through the post which is a CC of the letter written to my GP from the specialist. I'm still waiting for my M.E/CFS clinic but I thought I'd share with you the findings so far and see what you think...
  6. KellyJoanne

    I want to cry.

    I've just had to phone in sick to work AGAIN. I was off work on Thursday due to being absolutely shattered and unable to drag myself out of bed until 6pm. I was all set to go in again today but I've contracted a nasty cold which I seem to get affected by more than anyone else. My manager's...