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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. T

    5 emotions which turn into Chronic fatigue.

    My sense is that your comment does a good job of distilling the main spirit behind the collective resistance to investigating "stress." So I think it's important to emphasize what @pamojja already pointed out: that the primary resistance is basically political. My past life as a journalist...
  2. T

    5 emotions which turn into Chronic fatigue.

    If connotation is the problem, we should come up with a better term for "stress." How about "cursed by an evil sorcerer"? But I might argue that the term's malleability is precisely what makes it useful -- sort of like the umbrella term "disease." If you're a believer in mind-body...
  3. T

    5 emotions which turn into Chronic fatigue.

    I've seen this sort of rebuttal many times, especially when the topic of stress-as-trigger comes up. But I really don't understand it. Maybe I'm missing something. The charge is that I'm guilty of poor logic for wondering whether my stress may have triggered my illness (which, again, is not to...
  4. T

    5 emotions which turn into Chronic fatigue.

    Not to be argumentative, but note that when stress is mentioned as a possible trigger for susceptible people, the idea quickly gets reduced to simple causation, which is not the same thing at all. And blame is not an interest of mine at all; as I've said, my stress was severe, situational, and...
  5. T

    Never get colds or flus anymore? Here's one theory as to why....

    It's an interesting theory. I'd been thinking the reason I get a lot fewer colds than before is because I've been so adamant about managing my illness -- keeping stress low, resting frequently, stretching, etc. Plus, I've become a huge germaphobe. Like Kenny, I'll be interested to see if your...
  6. T

    Patterns of control beliefs in chronic fatigue syndrome: results of a population-based survey

    Yes, this is certainly a sensible way to view it, especially since I had many seemingly disconnected symptoms going back decades (all related to neuropathy, if you believe my neurologist). But, while I'm sure I was predisposed, the question I can't answer is whether, without a final trigger...
  7. T

    5 emotions which turn into Chronic fatigue.

    I have a slightly different take (after listening to the whole thing). I don't think they are frauds, exactly. And they seem genuinely empathetic. It's very plausible to me that their therapy might help certain people who are overwhelmed, depressed, repressed, exhausted, confused, etc. Their...
  8. T

    What helps your vibrating buzzing electrical symptoms? Meds? Herbs? What triggers them?

    These have been common symptoms for me for years, and they vary quite a bit. Sometimes they're pretty extreme -- flowing all through the body (including "brain zaps" similar to those from SNRI withdrawal) -- and other times they're limited to restless leg syndrome. I just assume they're all...
  9. T

    Fibromyalgia or ME/CFS?

    Seems to me some of us also have CFS as a symptom of FM -- but that assumes a chronic fatigue syndrome that is possibly distinct from ME. Also, I believe the tender-points test is no longer a necessary component of an FM diagnosis, as it can be expressed in other ways (including "burning" and...
  10. T

    Actual "brain fog" caused by low choline, leading to low acetylcholine?

    Do you know, then, if I've been getting premature acetylcholine breakdown, whether this explains my flu-like reactions to direct supplementation? I.e., when I flood the zone with extra choline, where in the process does that start making me feel worse than when I take no acetylcholine...
  11. T

    Actual "brain fog" caused by low choline, leading to low acetylcholine?

    I've never tolerated direct acetylcholine supplements like alpha GPC, or even ALCAR or alpha lipoic acid. This has been very puzzling, as these are widely recommended supplements. But I've been having some interesting results this past month with galantamine experimentation. Galantamine is not a...
  12. T

    Hello, Has Anyone Cured Their CFS by 100%

    Not wanting to hijack the thread, but as a new member I'm just wondering if this is the consensus. The top banner describes the forums as CFS/ME. I do not know if I have ME, but I certainly fit all the criteria for CFS (for which I have been diagnosed, as well as FM and three forms of...
  13. T

    did any of you have think you had other bad neourological disease??

    I'm not sure what you're asking. What I was saying is that from my experience anything that boosts gaba may take the edge off neurological outbursts.
  14. T

    did any of you have think you had other bad neourological disease??

    My first referral was to a neurologist who found I had peripheral neuropathy, small-fiber, and autonomic. I'd had symptoms like jerking, numbness, and restless legs for years and years, and the neurologist also attributed my years of other issues such as irritable bowels, GERD, apnea...
  15. T

    anybody get a brain mri???

    Early on I was convinced my MRI would show something extraordinary like MS or evidence of stroke -- since most of my symptoms seemed connected to (well-documented) neuropathies. But I was told they saw no abnormalities "for someone of my age."
  16. T

    My start to healing and how Tendonitis/Tendonosis/Bursitis/Gout can overlap and mimic each other

    So much great info in this thread. I'll be revisiting it often. Glad to get confirmation about how murky all these conditions are. I've been through many diagnoses, often conflicting. It never occurred to me that my gout symptoms might be related in someway to my more systemic connective-tissue...
  17. T

    WHAT DOES THIS POSITIVE EFFECT OF PREDNISONE MEAN?

    I do wonder about the OP's question regarding his specific low-dose, non-daily trial. It seems most of our conventional wisdom about steroids for ME/CFS/FM is based on larger daily doses. I've been using fairly conventional doses (with ramp-ups and ramp-downs) for, say, two-week periods when I...
  18. T

    Patterns of control beliefs in chronic fatigue syndrome: results of a population-based survey

    Personally, based on my own experience, I think it's possible that chronic severe stress (for example) may play a triggering role for some of us who are already predisposed to illness. In my case I think of the stress not as "behavioral" but as "environmental." I had various symptoms going back...
  19. T

    For POTS or for digestion: Instead of Parasym Plus, increase acetylcholine at low cost & naturally

    Wow, the race is on. Here's another trial hoping to actually reverse neuropathy (not just treat the pain). This one, instead of blocking acetylcholine, focuses on reducing gangliosides.
  20. T

    'Betwixt and between' Liminality in recovery stories from people with Myalgic Encephalitis

    Yes, it seems to me that our disease, more than most other diseases, allows many of us to experience periods of relative health in which we may not signal any particular "illness behavior" (assuming we've been practicing "illness management"). For example, I am able to go to work a couple of...
  21. T

    For POTS or for digestion: Instead of Parasym Plus, increase acetylcholine at low cost & naturally

    This current study intrigues me because A) I have never responded well to acetylcholine supplementation, and B) my neurologist believes my small-fiber neuropathy is causing my FM and CFS. Researchers found that by blocking specific acetylcholine (muscarinic) receptors, namely M1R, they can...
  22. T

    WHAT DOES THIS POSITIVE EFFECT OF PREDNISONE MEAN?

    I've never tried that kind of dosing strategy. I keep prednisone on hand because it's helpful for my semi-regular flare-ups of rashes and gout-type spells. I ramp from 5mg to 30 per day until the rash/gout has subsided, then ramp back down. Usually a two-week process. I do look forward to the...