• 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. K

    Story of hope...but still broke

    Thank you taniaaus! yep maybe you're talking about me :-) I havent posted here for a while but I remeber you answering my questions:-)
  2. K

    Story of hope...but still broke

    Hello buddies I have not returned to this forum for months now but I am hoping I am posting this message in the right section, if not, I am sorry about it! First of all I would like to express my deepest and sincerest respect and thanks to thse of you who responded to my questions and worries...
  3. K

    is this muscle weakness really CFS or is it something else?

    rlc thank you very much for the links! My adrenals have been examined and they are fine, as well as my TSH T3 and T4 so we know from thyroid either... Yes my vitamin is very low and I take strong supplements to help it (10000 iu/day)... but usually to have a low vitamin d there is some other...
  4. K

    is this muscle weakness really CFS or is it something else?

    Brenda I know all about those things, I just do NOT have lyme but I strongly believe this lyme diagnosis is a great cash cow for LLMDS and unfortunately a disaster for people like me for whom it takes forever to get a proper diagnosis... I got worse and worse after almost one year of...
  5. K

    is this muscle weakness really CFS or is it something else?

    I did not get these tests, who does them? neurologists? I am sure I have severe POTS...
  6. K

    is this muscle weakness really CFS or is it something else?

    Thank you very much Taniaaust. About the black spots, I think mine are more like the bruises that never go away and yes they got darker under the sun.. By the way i also developped a strong sun intolerance... is that part of ME? I do not have lupus... I went to a cardilogist this morning as I...
  7. K

    is this muscle weakness really CFS or is it something else?

    nanonug, i have een checke for diaetes several time, last one was three weeks ago, i have a perfect glycemia... Sparrow, Yes I didi have a viral onset, but again every neuro disorder including MS, seems to start with a viral illness... It's very possile I have sth else going on it just kills me...
  8. K

    is this muscle weakness really CFS or is it something else?

    Oh and I forgot to mention taniaaust, about skin issues, I have black spots on the base of my toes where there is atrophy... I really don't know what disease can cause lack spots on the skin and none of my docs seemed to care about that specific sign...
  9. K

    is this muscle weakness really CFS or is it something else?

    taniaaust, yes, my skin is going wrinkly in my hands and at the base of my toes... that is where there is muscle atrophy, obvious enough so that I don't understand how my neuro still thinks I have CFS (actually he says if I had amyotrophy it would show on my EMG, and it doesn't)...Do you know...
  10. K

    is this muscle weakness really CFS or is it something else?

    I aslo get a lot of pressure around my heart!!! my ECG is fine,,,
  11. K

    is this muscle weakness really CFS or is it something else?

    sparrow, thanks a lot for your advice. My muscle atrophy is mainly noticeale in my hands, feet and forearms, the other places, I could explain by lack of use but my hands?!!! the bumps and balls that cover the finger jints are not there anymore... I get severe burning pain and pressure all...
  12. K

    is this muscle weakness really CFS or is it something else?

    thanks again evryone! Hope123, did see aout five neurologists, had two brain and spinal cord MRIs, spinal tap, 2 EMG... nothing shows on these...But I stil can't believe CFS can put me in this situation and still think I have something else going on. I actually was convinced I had ALS ...
  13. K

    is this muscle weakness really CFS or is it something else?

    nanonug, I have been evaluated for depression and I don't have it, I am dead meaning I am socially and professionnally dead, no "productive" life on these sides, secondary to my illness of course... Otherwise, I'm still happy to be alive... Thank you for those links, how efficient is it to treat...
  14. K

    is this muscle weakness really CFS or is it something else?

    Hi everyone\ Thank you very much for your input! Yes it's possile I first had FM efore switching to ME, I don't know how FM can e painful ut I had really excruciating pain, I would scream from pain, thank god, i on't have that much pain, it went away y itself suddenly, ut only to e replaced by...
  15. K

    is this muscle weakness really CFS or is it something else?

    Hi everyone. I've just joined this forum, I'm glad I found you! I have been dealing with this crazy ilness for about four years now, I am 32 but I consider myself as dead since age 28. it has kept getting worse and worse. At first doctors didn't know what I had, I got every single medical exam...