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

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Search results

  1. flybro

    Pins and needles

    yep, more common on left but also can be right side, hands, feet,sometimes up leg and sometimes around mouth and nose, dehydration and cold makes much worse
  2. flybro

    Webinar with Dr. Alan Light on Novel Gene Variants in ME/CFS and Fibromyalgia

    Johnathon Kerr study that showed genetic variations within ME, and I think FM patients too.
  3. flybro

    The sexist reality of being a woman with ME

    This book would be a great source for this thread, and it's by one of our own. Authors of our own misfortune?: The problems with psychogenic explanations for physical illnesses
  4. flybro

    The sexist reality of being a woman with ME

    The phrase, 'white male privilege', makes me cringe a bit. There are many white males, who aren't benefiting a great deal from the privileges that their race, and gender confer on them. However I have seen 'white male privilege' in action, and it is surprising how deeply ingrained and subtle it...
  5. flybro

    How to take meds safely

    Thanks, great thread. I've looked at some of the ones with alarms, has anyone tried these? It must be available in the UK.
  6. flybro

    IBM Is Counting on Its Bet on Watson, and Paying Big Money for It

    Give it to the UK and I bet it would recommend CBT or GET ;)
  7. flybro

    New paper by Morris: Role of Viruses, Bacteria, and Chronic Fungal Biotoxin Exposure in the Genesis

    editing post i think i got the wrong forum, so may well be wrong avout the ban too.
  8. flybro

    New paper by Morris: Role of Viruses, Bacteria, and Chronic Fungal Biotoxin Exposure in the Genesis

    G.Morris, I trust him, he's both brilliant and passionate.
  9. flybro

    Johnson: Xenotropic Murine Leukemia Virus-Related Virus (XMRV) and the Safety of the Blood Supply

    I don't believe science prevailed. I witnessed an absolute concerted, politically and economically motivated assault on science. Had the science been done with-out the coordinated propaganda, I might have felt differently. However it wasn't, and I now believe there is any number of...
  10. flybro

    problem to swallow

    @Jan I have the other end of that problem, my partners great at noticing and fast to react, so I've had a few high speed back slaps, lol.
  11. flybro

    problem to swallow

    i've always had probs swallowing meds. one with tabs especially bad, but can happen with foods too, I just can't swallow, it just won't happen. I've wasted a lot of meds because of this. the other thing is, I miss swallow, and end up inhaling drink/food. This gets worse when tired, or when i...
  12. flybro

    Amitriptyline Poll - Does it work for you?

    i found this initially too, and originally i only took 1x10 occasionally, and that would be a good sleep, but very sluggish/oi next day. It seems to have evened out now i've been taking them consecutively now.
  13. flybro

    drinking meal replacement shakes/soylent instead of eating?

    cheers @veganmua my son uses huel, he says its great.
  14. flybro

    Royal College's Report on CFS (1996)

    Sorry was reply to @Glycon but coudlnt reem name,
  15. flybro

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    120 for me using 6 a day for 20 days. that's my normal very well paced life, 'doses', which is fairly sedentary. more activities, (physical and/or social) = more meds, which equals more side effects.
  16. flybro

    Royal College's Report on CFS (1996)

    I think some people may take advantage of the cfs diagnosis basket case, without biomarkers! However I find it hard to imagine that anyone would be able live the act for very long. I'm sure there are easier ways of conning the system, in phone camera world, with instant uploads, the chances of...
  17. flybro

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    @Mariah because i have so many probs(side-effects) with meds, I'm loathed to change what does help. my mainstays are tramadol, amitriptyline2x10mg, and Q10 . Aspirin for flu flare, and prednisone for unavoidable flares, ie family/medical/dental interactions. All of which seems to help with...
  18. flybro

    Scientists want to train kids to be bulls**t detectors regarding health claims

    well if they taught them to detect the bull-shitters, children would become revolutionaries :)
  19. flybro

    Royal College's Report on CFS (1996)

    If it was deconditioning, I should never have got ill, when I did. Also I tried to eat, drink and exercise my way back to 'health' using 'mind over matter', and guess what? I got much worse, very quickly. Nearly always feels like an immune response when i do push the envelope. I get increased...
  20. flybro

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    tramadol here too. GP told me i had to take 1 4 times a day, and that i have to do it for at least a week. I felt as high as a kite, no functional capacity at all, but i was comfortable for the 1st time in many years. now i take between 6 and in emergencies 8 a day. They are a life saver for me.
  21. flybro

    Do Abnormal Mold Markers Really Mean Exposure to Mold/Toxins?

    I'm allergic to penicillin, and often wonder how badly i'm affected by mold. I have fibro and mcs dx from uk rheumy from uk cfs clinic. I think i've noticed symptom flares at this time of year near, damp corner in garden, where fence has lot of bright greeny/yellow powdery stuff. Is this a...
  22. flybro

    Amitriptyline Poll - Does it work for you?

    Amitriptyline 25mg tabs seem to aggravate my bladder, but am fine on 10mg tabs which are blue! The 25's are yellow and i'm pretty sure it's the colouring that's caused the bladder prob. Still testing, but it does feel that the 25s were better for sleep, pain even a little more energy i think...
  23. flybro

    Flu vaccination and ME/CFS

    Nope, permanent state of flu here, which I attribute to a tetanus jab. I've also been told that the jab they used was withdrawn from use 8 months after it was brought out.
  24. flybro

    Medical harms poll (Potential for class action law suit regarding CBT/GET)

    I avoid 'medical care' at all cost. As bad as this sounds, I think I would prefer death over a trip to hospital.
  25. flybro

    UK ME/CFS Research Collaborative (CMRC) Annual Science Conference 2016

    More studies into sleep disorders?
  26. flybro

    Alem Matthees analyses on released PACE data blast "recovery" claims - huge damage to PACE

    WOW having ME and being able to donate for someone else's housing needs! mmmmmmmmmm
  27. flybro

    Counter petition to the MEGA petition, brainstorming stage

    @charles shepherd Did the MEA support PACE?
  28. flybro

    ME/CFS Grand Challenge (MEGA)

    MEA " I can understand all the concerns, criticisms and questions about the MEGA study that are being expressed by the ME/CFS patient community on internet discussion forums. I can also assure people that they will be transferred back to those at the CMRC (CFS/ME Research Collaborative) who are...
  29. flybro

    PoTS and ME/CFS - MEA website survey

    I first had symptoms in my mid teens, although I had fallen out of a fair few trees before then. I also had visual problems then too, as I do now. The symptoms went away in my teens too, and didn't come back until my early 40's.