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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. Shakota

    How to handle daily frustration and boredom

    I subscribe to Acorn which offers (at 5 bucks a month) older British TV series. For me, it is a pleasurable distraction and the acting is superb. I like immersion in a story. If that interests you, I will name a few outstanding shows on offer.
  2. Shakota

    Fibromyalgia or ME/CFS?

    ... and I still do not have a diagnosis of fibromyalgia and sfc to be able to fight some pension in the future. At the moment I'm just focusing on finding the causal pathogen of this disease. never in my life I imagine that a virus causes so much damage to a person and the worst thing is that I...
  3. Shakota

    Comment by 'Shakota' in 'Thinking of My Mortal Coil...a Few Things'

    Great post, Runner 5. I searched for posts on travel because it's been more than 4 years since my last trip (a first world problem, I know). I have fibro and mild CFS/ME, a 40% of normal functioning. I want to go to Europe but i can decide where and why to go and if I want to endure all the...
    • Shakota
    • Blog entry comment
  4. Shakota

    Ambition and ME/CFS

    Soti, I can identify with "makes my head spin," (switching gears between ambitions to do things and ambition to rest). Rebecca: very interesting comment about New Englanders. I grew up with a father whose family settled in MA in the 1600s. And not only is there that push push push and to...
  5. Shakota

    Ambition and ME/CFS

    RebeccaRe: I get very emotional about not being able to work. When I hear others talk about a new job, I think: Oh, I could do that. Well, no, actually I can't and it still hurts after 17 years of not being able to work. I had pain associated with every part of my body, pain with cool air...
  6. Shakota

    Ambition and ME/CFS

  7. Shakota

    Ambition and ME/CFS

  8. Shakota

    Ambition and ME/CFS

    My computer just erased my elaborate reply. I guess it's my editor. Yes, that sleep variability and other stuff like it can make your reptile brain less optimistic about anything, much less recovery. I discovered this week (I've only had this fibro&fatigue thing for 20 years now) that I can...
  9. Shakota

    Ambition and ME/CFS

    I have fibromyalgia with PEM, dizziness, etc. I am not quite sure that I strictly meet the CFS/ME Canadian guidelines, but this website sure sounds like the right place for me; I'm at 35% normal (Bruce Campbell's scale). OK OK. I have been ambitious (still want to write that novel, learn more...
  10. Shakota

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

    And I'm partial to the drug methadone (in very very low dose, such as 1.75mg to 5mg) because it has a dual action, it doesn't make you want to escalate the doseage and doctors are more okay with it because of methadone treatment centers (methadone used for addiction treatment). Also, for me it...
  11. Shakota

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

    Being a former registered nurse, I would take you off of any ibuprofen as it can cause massive stomach bleeding. Another thing to look at is how much acetominophen (paracetamol) per 24hrs. you're taking. If you drink alcohol or take other meds you need to back off on the 24 hr limit, also. You...
  12. Shakota

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

    I have fibromyalgia and PEM, and was a practicing RN. I have a combo of drug that works for moderate pain and moderate cognitive problems (what I'd term confusion) on a daily basis for 15 years. I take 2.5mg methadone together with either tizanidine or baclofen (lowest dose). Methadone doesn't...
  13. Shakota

    EPO for stroke/CVA to increase oxygenation?

    Professional cyclists have been known to inject EPO to increase oxygen in the blood. I've injected it professionally to dialysis patients. Look up the side effects on drugs.com Pretty sure you wouldn't want your red blood cell level much above normal.
  14. Shakota

    Free Online Pain Management Course

    It seems I signed up that course and found that the main expert is a dentist. If I've got the right course in mind, it's all about treating pain without drugs. Yes! Good luck with that. I've run across MD-ridden websites that maintain that chronic pain sufferers (no mention of severity) must...
  15. Shakota

    Comment by 'Shakota' in 'For two hours only'

    Wow, fantastic!
    • Shakota
    • Blog entry comment
  16. Shakota

    What a f**ked up disease this is!

    Completely wiped out from a 3 hour visit to see family in same town. It was pleasant, grandchildren fun and very touching first-grader Christmas-crafts gifts. I thought it would be brunch, as was last year and I had brought the same requested food items but no. Got home. Could not make a cup of...
  17. Shakota

    Spain: ME/CFS situation in Spain

    ASSSEM has an interesting website. I'll read more of it later. Thanks for it!
  18. Shakota

    Spain: ME/CFS situation in Spain

    I listened to him again, and now I get it. Hombre, this guy is not up-to-date. Isn't there a researcher who is current with the international CFS/ME scene?
  19. Shakota

    Spain: ME/CFS situation in Spain

    I think I am understanding the Spanish of the video well enough to say that he seems to be talking about the chronic fatigue (and not chronic fatigue syndrome) associated with fibromyalgia. Or, if he is talking about CFS/ME, then all he does is outline very lightly some of the symptoms. He is...
  20. Shakota

    Fibromyalgia or ME/CFS?

    I can't supply a reference at the moment, but there is no longer a tender point criterion for diagnosis of fibro. It's more a list of symptoms from several categories.
  21. Shakota

    Any remedy for dry eyes?

    This might help: Systane brand eye ointment. You place a strip of it along your lower eyelashes before you go to bed. This helped me with constant dry eyes (due to aging, meds) and was recommended by my opthamologist. Good luck!
  22. Shakota

    Psychological Medicine paper: behaviours that perpetuate ME: Chalder and Ross-Morris

    Sounds like too much emphasis on meaningless research (publish or perish--I say perish). In PhD programs you have to come up with a research topic, however silly. There's an IQ problem here on the part of whoever funded or approved this. Sound like psychiatry doesn't have much relevance anymore...