• 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. Braveheart

    UK thoughts please

    @ukxmrv, I think it is a good idea to focus on the most pressing symptom and separate it from M.E.. I can see how that could work. I am grateful for all the different views here, thank you.
  2. Braveheart

    UK thoughts please

    Yes, thank you. I see that each person has particular responses to this illness, physical and emotional. It is curious that an illness of exhaustion requires so much V tiring research.
  3. Braveheart

    UK thoughts please

    Will look into this, thank you. I have trouble standing or even sitting for very long, much better with legs up or lying down.Have light headedness, dizzy, etc which I thought was blood sugar issue. Head feels like I am underwater with ongoing background headache. I worry about muscle loss...
  4. Braveheart

    UK thoughts please

    What a stupid thing to say - Try to enjoy life. How is that helpful? It's like saying there are people worse off. It may be true but how does it help. Artorias, my previous GP who diagnosed PVFS a few months ago told me to develop a more philosophical attitude. This after I said that having...
  5. Braveheart

    UK thoughts please

    Thank you everyone for your replies. I feel so sad and angry too, to know that you have all had such pathetic support. It now takes about 3 weeks to even get an apt with my GP and when I leave I am mostly in tears and exhausted from the half hour or more that I have had to wait in a room full...
  6. Braveheart

    UK thoughts please

    Yes, I have had all the tests and was wondering if I should push for the referral as the GP tells me " The service is in very high demand." and my experience so far is that I have to push for everything which I find exhausting, demoralising and emotionally draining. I know you have all been...
  7. Braveheart

    Zenpherol ?

    Yes, that's it. Have you tried it? Any good?
  8. Braveheart

    UK thoughts please

    UK people , your advice please. Is it worth pursuing help within NHS? After loads of research both on this site and locally, I see there are m.e. clinics where it seems they mostly offer the CBT, pacing and graded exercise programmes. I don't see any positive posts about this. Is there anything...
  9. Braveheart

    Zenpherol ?

    Has anyone tried Zenpherol? Am in UK so might only be sold here.
  10. Braveheart

    The PACE trial: where "recovery" doesn't mean getting your health back

    Thanks x
  11. Braveheart

    The PACE trial: where "recovery" doesn't mean getting your health back

    Do people recover their health with this illness? I am beginning to feel more miserable/depressed by the minute.
  12. Braveheart

    Most ignorant physicians - neurologists?

    Yes. And in the UK younger male GPs and younger and older female GPs.
  13. Braveheart

    Let me introduce myself

    Thank you, your post really helps and your kindness is good medicine. Cannot imagine how coped as a young girl with GPs who had no idea of your illness. You seem to be managing it well now. And oddly enough my eyes also sting when they water . I use eye drops. Merry Christmas!
  14. Braveheart

    Let me introduce myself

    Hi, I am 64 and I am told I have Post Viral Fatigue Syndrome. The M.E. Assoc tell me it is the same as M.E. but others say different things. I am in bed half the day with no energy. I have blurred vision, headaches , sleep disorder and sore muscles plus a cold that is still here after 4 weeks...