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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. R

    How would you describe your brain fog?

    I agree with this. Many people talk of inability to bring up memories or explain things. Personally I don't struggle too much is this regard. However I do have a constant horrible physical feeling in my head. I always say it feels like someone has spread toxic honey on my brain. It effects my...
  2. R

    CFI Spinal Fluid study from Lipkin and Hornig is out.

    Can anyone explain the implications of this study in simple terms? The first study of cytokines from these researches implied autoimmunity and differences in treatment required between long and short duration patients? Does this imply more than that? Or is it adding to the previous study and...
  3. R

    Briefing on the Institute of Medicine report in Washington, D.C. --webcast March 25

    Not sure if this has been posted yet. Well worth a watch.
  4. R

    Heart beat feeling like it is pounding very hard...feeling and hearing each beat

    This is very interesting and something I often described to people it felt like. As sometimes my heart can feel more like it's clicking than beating. Do you know how you can get this tested?
  5. R

    Heart beat feeling like it is pounding very hard...feeling and hearing each beat

    I have pretty much the same symptoms myself. Very similar. I went to a cardiologist after experiencing ectopic heartbeats. It felt like I was missing beats but actually had extra. Since then I go through stages of these ectopic beats along with my heart pounding really hard. It's best standing...
  6. R

    A subtype of ME?

    @MeSci Thank you!
  7. R

    A subtype of ME?

    That's interesting about your leaky gut diet. I'm currently following paleo and have found it helps. Do you have a link or any information on the diet you are following? Thanks
  8. R

    A subtype of ME?

    CPET? I do have PEM, if you are referring to post exertional malaise? If I push my limits mentally or physically my health takes a turn downwards over the coming days / weeks.
  9. R

    Serum B12 verging on high?

    Thanks for the replies everyone. Seems it's not too unusual to have a normal or slightly high level then. Anyone aware of the implications of hypochlorhydria and B12 levels? My understanding is that B12 needs high stomach acid levels to be absorbed. So therefore it should be a reasonable...
  10. R

    Serum B12 verging on high?

    Hi everyone, I know low B12 levels is a common occurrence for people with ME / CFS, so I got my levels checked recently. To my surprise the came back as 652 ng/L (ref: 191 - 663). So on the upper end of the range. Is this unusual for someone with ME / CFS? Also is anyone aware if this makes...
  11. R

    A subtype of ME?

    Thank you everyone for your replies. So do you think cutting out dairy and mercury exposure stopped it? It seems to be something I keep coming back to. I've had it tested for on the NHS maybe three times now, though all have come back negative (It was a stool test). However I did do a...
  12. R

    A subtype of ME?

    Hi everyone, I've had ME / CFS for just over ten years now and have got myself involved in many support groups and charity meetings etc. While I've always believed I have a form of ME I can't help but notice differences to most people. My main symptoms are digestive problems, brain fog /...
  13. R

    Chronic hunger

    Thanks for the replies everyone! I'll look into pituitary stimulation hormones as that's not something I've considered. Thank you. The hunger does feel like a gnawing slightly burning sensation. Though it is relieved to some extent by eating extra food. Also my systemic symptoms of...
  14. R

    Chronic hunger

    Hi everyone, I've had ME/CFS for just over ten years now. I became ill at the age of 16 with no obvious reasons for onset. Throughout my ME I have always suffered with severe hunger. I am aware that most people with ME seem to struggle to eat and was wondering if anyone had similar symptoms...