• 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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Search results

  1. S

    Uncomfortable when standing? Faint easily? Think: POTS!

    Fantastic 🕊️ I remember hearing of Dr Gall years ago, but I just assumed I was out of date – you have inspired me to be a little proactive for once!🙏🏻
  2. S

    Uncomfortable when standing? Faint easily? Think: POTS!

    Thank you for this.! I’d known about pots and OI ever since I was diagnosed with ME, (2016), but have sort of lost impetus to do anything except to just say ‘I have ME’, to doctors. I have moved to the UK meanwhile and have had few relationships with any NHS doctors, and just slowly...
  3. S

    Talking wipes me out.

    Listening is as bad for me - worst of all, for me, is writing an email, trying to say what I really mean…Texting easier but I find often that I’ve spent 5 minutes wording a short one. Choosing emojis takes almost as long as finding the right words…after any of these I am truly wiped out… 🙊
  4. S

    Can't control malaise

    Hello Richmond, I experienced exactly this for a few years. No supplements have ever ever helped, I minimally was given a few of the fancy Rx medications - I can’t even remember which, but realised quickly that they did nothing good. I accidentally, for a serious injury, was given Tramadol...
  5. S

    CAUTION: Vitamin B12 Sublinguals — The Citric Acid Additive Can Erode Tooth Enamel

    Hip - (Apologies! I am so sorry, I accidentally deleted a big part of your message, when trying to highlight it to quote🙊)- I wanted to say that I used Dr. Greg’s oils for several years; but they are expensive, ordering from the U.K., and I have heard that Holland & Barrett have a transdermal...
  6. S

    Fatigue May Be the Wrong Term

    I don’t think that lack of stamina describes it. It is pain; not in the musculo-skeletal sense, or the toothache sense, (though it certainly can include ordinary personal aches and stress pains). I’ve never manage to communicate it, but it just IS pain, no other word can convey the...
  7. S

    Normal - how often and what does it feel like?

    Im sorry, usual brain fog. I see it was Valentinelynx who was warm with energy for 5 years, not I! Valentinelynx, that’s fantastic! It only happened for me in spurts, so every year I took another pill, having begun with one, now at 4, and called a halt. But nothing else helped at all, and I was...
  8. S

    Normal - how often and what does it feel like?

    I’m sorry for the late reply; I sure you’ll understand! I did not feel normal at all for 5 years !..I had a couple of hours a day when I was able to walk (maybe 2k steps)... For I think the last 4(?) years, I take 4 x 50mgTramadol a day, and never, never, no matter how terrible the crash...
  9. S

    Normal - how often and what does it feel like?

    I agree! When I posted that, it was late at night and I was very crashy. . As sooN as I sent it I felt ashamed. Then I saw your post and felt even worse! I do not normally whinge in my thinking, let alone speaking! It was just some sort of temporary dark feeling I’d been experiencing, and I...
  10. S

    Normal - how often and what does it feel like?

    I can barely remember what feeling normal means - but there was a period, about 5 years ago, when I first started taking Tramadol, that I felt - not normal, but good, for a few hours of energy, after a dose. But it was a bit manic, fake, energy, and I always paid for acting my normal self. And...
  11. S

    Hopeful news

    Thanks, @Mary and @Rufous McKinney: I didn’t realise that my email version of the Berkeley Wellness arrives in the UK months later than the paper does in California! Having read PR for years, I was very surprised when I returned to the UK only 10 months ago: I’d been dreading new medical...
  12. S

    Hopeful news

    Thank you Lisa! It does seem intelligent, not just looking for a catchy story. Disclaimer doesn’t amount to much - maybe the Wellness Letter always puts it at the end??? . The opinions in this interview do not necessarily reflect the views of the UC Berkeley School of Public Health or of the...
  13. S

    Hopeful news

    To me, this is news; I used to live in Berkeley...
  14. S

    Crashes and/or depression?

    I sympathise deeply. Strangely, after 5 years of this illness, suffering but never depressed - it suddenly hit me a week ago. I never knew what real depression meant before: sadness, helplessness, frustration, hatred of losing mental functions, yes: but not depression. But you really know it...
  15. S

    Heat intolerance - common in ME/cfs

    Of course, you are right; OI and POTS are not essential to ME. I was just interested in seeing, yet again, how variable this disease is. I sometimes tend to think, when just hearing that someone has ME, that they feel the way I do. There is something in common - yet the specifics are as...
  16. S

    Heat intolerance - common in ME/cfs

    I always imagined that ME sufferers all have what I have: severe intolerance to heat and cold. A difference of a few degrees can make me go from heat sickness ( particular utter exhaustion on hot days) to horrible cold, changing clothes, getting more blankets, etc. Once my body starts getting...
  17. S

    What Types of Fatigue Do I Experience Poll

    I need that t-shirt ( or perhaps a tattoo)! Almost exactly my experience, @Wolfcub: one very short, beautiful walk, feels so healthful, so happy, and I am so grateful- thinking that I’m going into a “good” spell ; then, sometimes 24, sometimes 48, hours (often to the exact hour) later, I...
  18. S

    Comment by 'Sidney' in '48-hour PEM delay'

    Sometimes it has seemed uncanny: 48hours, almost to the hour, I get hit by the bus - I had always done some bad, anaerobic, exertion (one of those where you just press on for far too long, as @wolfcub did, because there is no alternative.) I may have forgotten - though not recovered from - what...
  19. S

    RCCX on Health Rising Blog!

    I read this on Health Rising last night and I feel as though as a load has been lifted from my whole body/mind (in severe crash this week). I don’t expect cure, or help, or for these genetics to be unravelled and verified completely, for a long time. But to have at least a dozen diseases...
  20. S

    OAT - Organic Acid Testing - is it useful?

    I see from the site that GPL offer many variations on their test. Are there specific add-Ons that pwme should look for? I realise we have many different symptom clusters, but there must be some things that are most likely to be problematic for us? Or for particular situations : for instance...
  21. S

    Dreaming?

    My experience has been very similar: always a very ‘active’, vivid dreamer, remembering a lot, when mecfs got properly going, (after some other a.i. diseases), about 3 years ago, dreams completely stopped. Now 3 years on, they are creeping back - not quite remembered, but there. I can’t account...
  22. S

    OAT - Organic Acid Testing - is it useful?

    Very grateful for all answers! @sb4, things must be different in US: the ME/CFS clinic, rheumatologist, and pcp (gp),have all said they can’t do it, that I should ask one of my other doctors... @flong : it seems that Canada is, as so often, more enlightened than we in the US. @bjl218, yes, I...
  23. S

    OAT - Organic Acid Testing - is it useful?

    May I ask how you organised it? As I understand from the Great Plains site, you can buy a test, but you must have a doctor to 'sign off' on it. I have not found such a doctor. I understand that the urine tests are much more accurate than routine blood tests. (?) I would like to do the OAT, not...
  24. S

    Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version

    Thank you so much for replying - exactly the sort of answer I was looking for. I’ll absolutely be following your blog. Somehow you are able to state things with authority and yet clearly - a great boon for the poor challenged patient!
  25. S

    Acute vs longer crashes?

    I agree. For me, the word 'crash' applies very literally to the sort of train wreck that happens when I've just gone over the limit: someone has talked on the phone for too long, or I’ve struggled to write an email for too long - and suddenly a bus runs you over: it is a CRASH. I passed out a...
  26. S

    Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version

    I had not seen this thread until today - I hope it is still open? I was thrilled when I saw the header on a PR page a few days ago linking to Simon McGrath's patient-friendly paper, and immediately printed it out. I try to keep up with reading about the research but have absolutely no...
  27. S

    ALL countires please sign petition supporting the complaint to the GMC about the PACE authors

    Thank you @Country Girl! I hope I am not just too cognitively damaged... I did get ONE replied signature and several complaints...and it did work for my original signature last Tuesday - but my constant testing keeps failing!
  28. S

    ALL countires please sign petition supporting the complaint to the GMC about the PACE authors

    This sounds too stupid but I am frustrated::( I signed early on: but since then, people I’ve emailed the link to, can’t find anywhere on the page to sign. When I go back to the petition page to check, I also can’t see any place for a signature! Has anyone else had a problem?