• 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. trails

    POLL: Do you still read books and newspapers now that you have ME/CFS, or do you read much less?

    Throughout most of my life, I have always been a voracious reader of almost any fiction genre. Like @Wonko, I was surrounded by books. A few years ago, at my worst, I had to stop reading completely. I'd read a paragraph, get ready to move onto the next, and realize that I couldn't remember a...
  2. trails

    How we can all donate $1,013,271 to OMF (Ron Davis) per year w/o spending an extra cent

    @Jesse2233, I already enrolled in Amazon Smile last fall but I think you posting instructions on how to do it is terrific! It really is easy to do and I predict your thread will result in more doing so.
  3. trails

    Does anyone on here sleep normally?

    Three years ago my doctor had me undergo a sleep test under the assumption that sleep issues might be at the heart of the constant fatigue. The test results showed that I was waking (even if only momentarily) 36 times per hour. Official diagnosis was "sleep disturbance". Prescribed 10mg...
  4. trails

    Janet Dafoe Joins Phoenix Rising Board of Directors

    Thank you, Janet!
  5. trails

    WHAT DOES THIS POSITIVE EFFECT OF PREDNISONE MEAN?

    My symptoms are terrible and I'm responding well. Having said that, that does not mean that I intend to take this medication every day for the rest of my life, either. As you say, it is a risk-benefit analysis. You indicate that the steroids produce a "high" that can mask all sorts of...
  6. trails

    WHAT DOES THIS POSITIVE EFFECT OF PREDNISONE MEAN?

    It seems to me that "comparable value" would have to take into account the level of symptom relief experienced by the patient, yes?
  7. trails

    WHAT DOES THIS POSITIVE EFFECT OF PREDNISONE MEAN?

    @Jonathan Edwards I appreciate and thank you for your frank sentiment. Forgive my lack of medical knowledge...I'm genuinely curious as to what you might attribute the remarkable results I've experienced with prednisone. Is it common knowledge (and I've somehow missed it) that prescription...
  8. trails

    WHAT DOES THIS POSITIVE EFFECT OF PREDNISONE MEAN?

    At this point, I'm taking it month-by-month. I just ordered another month's worth of pills, so will re-evaluate after those are gone. That will have been a total of 90 days on the medication. As stated earlier, unless I become aware of something more dire than an increased risk (or even...
  9. trails

    WHAT DOES THIS POSITIVE EFFECT OF PREDNISONE MEAN?

    About two months ago, during a follow-up appointment with my sleep specialist, the doctor noted that many of my symptoms sounded to him like inflammation. Despite the fact that previous inflammation blood test results were negative, he prescribed me prednisone. He started me at 20mg/day for...
  10. trails

    Eye fatigue and strain

    I've been experiencing this same symptom, concurrent with the sudden onset of cognitive and other difficulties, for the last three years. Like you, I had other CFS symptoms (PEM, etc.) that had been going on for quite a while before this. I agree that it difficult to describe. My eyes...
  11. trails

    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    @nandixon Thank you for passing along your insights to Dr. Fluge!
  12. trails

    Whey protein powder to address ME/CFS metabolic issues being identified by researchers - which one?

    Wow! I guess I just jumped in with both feet, starting (per the container instructions) with one huge scoop (about 30g) added to 5-6 oz water. Thanks for the reply. Hope to hear from others how many drinks they are mixing up per day.
  13. trails

    Whey protein powder to address ME/CFS metabolic issues being identified by researchers - which one?

    So, I went with the Dymatize ISO100. How many drinks per day are you guys doing?
  14. trails

    Dr. Bateman: Global Progress Report Nov 2nd

    @A.B., @Simon, @Sidereal, @alex3619 Are these references to pyruvate dehydrogenase starting to come together in a meaningfully significant way? See especially, A.B.'s Wikipedia excerpt above this.
  15. trails

    does your urine smell of ammonia sometimes?

    Mine smells musty, like laundry left in the washer too long. Very distinctive. Unfortunately (for me), my doctors have shrugged it off, and I've never heard anyone else on this forum report a similar odor.
  16. trails

    Mitochondrial and Energy Metabolism Dysfunction in ME/CFS — Myhill, Booth and McLaren-Howard Papers

    @Hip, thank you so much for taking the time to put this together! I always find your posts extremely helpful.
  17. trails

    Support OMF through Amazon and iGive! Each purchase a % goes towards OMF research!

    Done! Thank you very much for bringing this to our attention, Ben!
  18. trails

    Getting your eyes tested when you have M.E. variable eyesight

    I have very similar issues regarding fluctuating visual acuity. Along with the symptoms listed by Dr. Shepherd, I would add that I have a near pervasive tightness (or stiffness) in the muscles surrounding the eyes. Though almost always present, this symptom does wax and wane in terms of...
  19. trails

    What do You think is your most disabling symptom?

    Cognitive, also...without question.
  20. trails

    Gordon Medical Community Sponsored Metabolomic Study (Individual Data)

    Yes, I saw that. I interpreted your original statement as referring to a specific supplement. I see now that you're referring to the entire online supplement store in general. Thanks.
  21. trails

    Gordon Medical Community Sponsored Metabolomic Study (Individual Data)

    Which supplement are you referring to?
  22. trails

    Links to media coverage of the Naviaux study (Aug 30, 2016)

    Not the best editorial summary in the world, but this article was in the Health section of Fox News yesterday: http://www.foxnews.com/health/2016/09/12/people-with-chronic-fatigue-syndrome-may-be-fighting-hibernation.html
  23. trails

    POTS, OH, CFS: List of labs which test for adrenergic and muscarinic receptor antibodies

    Thank you for your efforts in researching this, Lolinda!
  24. trails

    Verapamil - an effective mast cell blocker

    I've been taking a very high dose (360-480mg/day) of Verapamil for almost 30 years as a doctor-prescribed prophylactic treatment for cluster headaches. For that purpose it works great, though it is not without significant side effects (chronic and severe constipation). If it has been helping my...
  25. trails

    Verapamil, a calcium-channel blocker, eases my symptoms

    I've been taking a very high dose (360-480mg/day) of Verapamil for almost 30 years as a doctor-prescribed prophylactic treatment for cluster headaches. For that purpose it works great, though it is not without significant side effects (chronic and severe constipation). If it has been helping...
  26. trails

    ME/CFS Test? Can you raise your legs when lying down?

    @Gingergrrl, now that you mention it, I don't recall ever taking any antihistamines other than Benadryl...so for me, thus far, I can only attest to the reaction to Benadryl. It is quite severe and as a result don't (can't) even use common cold medicines that contain it. @anciendaze, I...
  27. trails

    ME/CFS Test? Can you raise your legs when lying down?

    @anciendaze, I have always had a fairly severe paradoxical reaction to Benadryl and other histamines. That is, they make me extremely wired, agitated, and genereally feeling as if I'm crawling out of my own skin. Is this the "exaggerated response" to which you are referring? If not, do you...
  28. trails

    OMF update....CDR suggested to be implicated in M.E

    Can anyone see a way to tie in the apparent success that Fluge and Mella have had with Rituximab with these latest findings from Naviaux and Davis?
  29. trails

    Update from Haukeland on the genetic predisposition project

    Same here. Mother and both of my sisters.
  30. trails

    Alkaline phosphatase maintains microbial balance

    No, it was a blood test, and i have no idea if there's any relationship between intestinal alkaline phosphatase and blood levels.