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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. PattyPlum

    How many of us have neuropathic pain/damage; both peripheral and autonomic?

    Update: I have been diagnosed with EDS and POTS. I may have Mast Cell Activation/Histamine Intolerance and Small Fibre Neuropathy.
  2. PattyPlum

    Help identify this rash please

    Urticaria caused by Mast Cell Activation/Histamine Intolerance. Check out Yasmina Ykelenstam.
  3. PattyPlum

    Are some of us misdiagnosed? EDS, POTS, MCAS, Mito?

    I think autonomic dysfunction causes symptoms of ME. Something triggers it whether it's a virus, surgery or something else. I believed I had ME for years after Glandular Fever. I had all the symptoms listed. It took 8 years to get it diagnosed. Move on 23 years and then I developed POTS and...
  4. PattyPlum

    Is it correct to say ME is really EDS ?

    I said it was my personal opinion from the outset and that did not mislead anyone. I was basing this upon my own experiences and anecdotally from the scores of people I have spoken to about their own experiences.. I am exercise intolerant and also have post exertional malaise and that has been...
  5. PattyPlum

    Is it correct to say ME is really EDS ?

    As you will remember I said "I personally believe", as this is from my own experience of having ME/AD for 31 years (the POTS coming on 8 years ago) and also anecdotally from reading about the experiences of others with POTS and different forms of AD.
  6. PattyPlum

    Is it correct to say ME is really EDS ?

    I get both exercise intolerance and post exertional malaise and thats fully understandable with autonomic dysfunction. Years ago the symptom list for ME was pretty sketchy when it comes to nervous system related symptoms. I think back to my being a member of a few of the UK charities back then...
  7. PattyPlum

    Is it correct to say ME is really EDS ?

    I personally believe that autonomic dysfunction causes the symptoms of ME/CFS. I know many things can trigger AD and for some it is EDS. If you compare symptom lists for ME/CFS and AD, they are pretty much identical. I have had 'ME' for 31 years and it was only 8 years ago when everything got...
  8. PattyPlum

    Ehlers Danlos Type 3 Hypermobility - Do you have it?

    EDS is genetic and the ME/CFS symptoms come later.
  9. PattyPlum

    Ehlers Danlos Type 3 Hypermobility - Do you have it?

    Yes I have EDS 3. I was diagnosed last year at the age of 54! I had normal childhood. I dislocated my knee at 13, 17 and 23. When I was 24 I had Epstein Barr which gave me ME/CFS. Now I know I have EDS and having chronic fatigue from the autonomic dysfunction which goes hand-in-hand with EDS...