• 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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Search results

  1. otherworldly

    Are there skills from your education or career that have helped you as an ME/CFS patient?

    was brought up 2 always plan ahead & b prepared (keep gas tank at least half full, always, bring an extra layer of clothing, etc) both being a girl scout & being super creative helped immensely with being very resourceful, being a trained scientist helped in some ways 2, even tho i am far more...
  2. otherworldly

    Leg pain

    is it lactic acid build up from over use (which would b a burning pain)? that the 1st thing that comes 2 mind. if so, theres nothing u can do 4 it but stop overusing.
  3. otherworldly

    Poll: What Gives You the Most Hope for a Cure?

    toss up b/w ron davis & et's, but i voted Medicine from an advanced extraterrestrial civilization only b/c i feel it is they who truly know whats going on w/us. in all seriousness. i 've spent my free time these past few yrs exploring exo-politics & such & i've recently concluded that this...
  4. otherworldly

    Things I'm grateful for, feel free to add

    being very severe, i can no longer relate 2 much if any of things ppl commented on......however, i'm grateful 4 plastic forks, straws, electric toothbrushes, baby wipes, that i can still eat & feed myself. my cat who keeps me company & weed, can't 4 get the weed, b/c w/o it, i would no longer b...
  5. otherworldly

    Who are the 10% that get better

    not bizarre @ all. exercise is not synonymous w/health. keep in mind that some kind of stressor, whether virus, surgery, vaccine, etc, preludes this disease, & exercise is certainly a huge stressor, esp. if diet isn't supportive in relation 2 activity. also some ppl who exercise r adrenalin...
  6. otherworldly

    Who are the 10% that get better

    damn straight! in a recent & very rare moment of succinct clarity i came up w/that last paragraph. its my proudest contribution 2 the severe community, & u saw it here 1st!!!......& prob. last!!!:woot:
  7. otherworldly

    Who are the 10% that get better

    the problem i have is relating 2 most ppl, if not all on this forum. i am very severe. & even the difference b/w severe & very severe is vast, never mind compared 2 mild & moderates! whole other solar system! i am in a living hell & when i hear the moderates say the same, i think 2 myself: oh...
  8. otherworldly

    Pursuing treatment again

    idk, its the 1st/only 1 i tried! have u tried any h.pylori protocols such as mastic gum? just thinking out loud here...... i did gaps 4 ~3 yrs & it did nothing. this really could just b a vagus nerve thing. damn vagus nerve!!!
  9. otherworldly

    Pursuing treatment again

    wow, even a gaps dr......i'm so sorry. this is tuff stuff 4 sure i was taking the hcl even w/miniscule amounts of food w/no issues...perhaps u can still give it a whirl.....hugs
  10. otherworldly

    Pursuing treatment again

    simple, noninvasive, do it urself advice from a naturopathic pt. of view: whatever the cause, ur gi symptoms scream INFLAMMATION! inflammation causes early satiety as does low hydrochloric acid (hcl) especially. 1st try some betaine hcl w/meals then some proteolytic (systemic) enzymes such as...
  11. otherworldly

    Pursuing treatment again

    i do have very helpful info 4 u but 2 weak 2 type now...will get back 2 u in few days @ least, k?
  12. otherworldly

    The Lost Years

    22 yrs. half my life. after initial onset @ 60% functioning, took 10 yrs 2 reach 80%, mind u i had no idea what i was dealing w/@ that time & used mostly nutritional therapies. i was able 2 work full time & have a fairly normal life w/next 2 no social life, but i'm an introvert & i love my...
  13. otherworldly

    Pins and needles

    i found taking vit b5 made my pins/needles in feet disappear.
  14. otherworldly

    Ben and Claire's adventure to Davis-Dafoe land!

    i was a girl scout 4 many yrs (it was a family thing!) my mom was my leader & the "cookie chairman" 4 my town, so all the cookies ordered from my town ended up in our basement, stacked 2 the ceiling!!! any how, since they were a once a year thing (& yes we stashed boxes in the freezer...never...
  15. otherworldly

    I need your first month/season/year of illness for research please?

    august 26, 1995 new hampshire, usa
  16. otherworldly

    Medical cannabis for making existence more bearable?

    i am very severe. i smoke pot ~4x a week not only 4 the escape but 4 the ability 2 have a creative process & daydream. not that i can do anything w/my creative ideas, can't even write them down, but i'm just present w/them & its fantastic. its the most fun i have being so disabled. w/out pot i...
  17. otherworldly

    Ben and Claire's adventure to Davis-Dafoe land!

    oh ben! i recognize ur sense of humor as being quite similar 2 mine as it once was, b4 getting 2 severe 2 even get that stuff out in writing....ur a HOOT! ty 4 providing us w/such a well written account, not 2 mention entertainment!!! many of us r living vicariously thru u! also, & a big ty 4...
  18. otherworldly

    Ben and Claire's adventure to Davis-Dafoe land!

    i am loving every damn bit of this play by play! ty does not eve suffice.....xx
  19. otherworldly

    A unofficial update on Prof Davis and Janet Dafoe...

    yes, i figured as such...my brain is like mush so there was a delay in that consideration! yes, i'm certain the possibility of whitneys stress level always being high is spot on.....ty!
  20. otherworldly

    A unofficial update on Prof Davis and Janet Dafoe...

    @Ben Howell , @Rose49 ..... i'm really curious... as a former lab tech & researcher & now very severe patient, won't the stress of the situation on whitney having trouble w/the PICC skew the results? or does the stress not so much effect this particular test? or perhaps it doesnt make a...
  21. otherworldly

    A unofficial update on Prof Davis and Janet Dafoe...

    this is just so exciting! i almost can't believe it! but then again, the instant i heard about the davis/dafoe family, i said out loud, which is rare b/c i can only speak 3 monosyllabic words spaced out thru the day "THIS man is gonna figure it out. i just know it" :)
  22. otherworldly

    In Memory of Jodi Bassett

    she did die from breast cancer.....cancer being a complication of her ME. cancer is much more common in PWME, as r heart issues, hence they r considered complications
  23. otherworldly

    In Memory of Jodi Bassett

    reply from the Facebook ME/CFS Memorial Page: "According to a posting by xxxx Jodi died from breast cancer that could not be treated in her severe condition. Jodi died from complications of her ME."