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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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Search results

  1. Z

    Lyme Disease, a severe epidemic condition the medical establishment refuses to acknow

    I'm in BC and have CFS, FM and MCS as some of you already know :) But I got dx'd in the US long ago (been ill 31 yrs now). My husband here also has same and my youngest daughter just got dx'd with FM too... plus i have older kids in the US with one who's had cfs/fm since he was 15 (he's...
  2. Z

    Applied kinesiology?

    Muscle Testing, Chiro et al I was sick for 10 yrs before I got a dx of CEBV... that was in 1989 btw before they called it CFS :) I did have a dx when I first got ill but that was pesticide poisoning... didn't know about CFS til much later tho I did have it from '80 or '83... That said...
  3. Z

    Fragile Skin ??

    Do any of you have fragile skin? I know easy bruising is not unusual with CFS. What I've been getting for the last several years appears mostly on the upper side of my right arm (I'm right handed) above my wrist and up maybe 6", in that area. It's like bruising, if i barely scrape against...
  4. Z

    Article: Lightning Strikes a CFS Patient

    recovery stories as encouragement Cort, I for one am thankful for any recovery story you publish here. It is encouraging to know that some people do get better and hearing about what treatment they used is interesting too, even if it's not my cup of tea. Please continue to post these...
  5. Z

    Comment by 'Zona' in 'In Depths of Despair'

    I'm so sorry to hear that. You sure have my sympathy. Wish I had an answer but I don't. I get heart palps sometimes and times it speeds up a lot real suddenly and flutters. UGH! Yup these things sure can drive us crazy! The palps...feels like skipping but they're actually extra beats...
    • Zona
    • Blog entry comment
  6. Z

    R U Amygdalized?

    His name was Norman Cousins :)
  7. Z

    Why is Mayo Clinic doing Amygdala Study?

    I agree. The two don't have to be in opposition ie brain/miind vs body. The brain IS part of the body and they do influence each other both ways too. I though Gupta believes that a virus or toxin injure the amgydala, which would be a physical thing? I don't think any treatment like this...
  8. Z

    Can you trace your illness back to about 1980?

    1979 - Pesticide poisoning I got ill in the fall of 1979. I then found out I was pregnant (4th child) and didn't realize just how ill i was for a few months. But my son was born early and had birth defects and by then I was flat out sick. Found out later I'd been exposed to pesticides -...
  9. Z

    The Gupta Program and XMRV: discussion

    Don't Throw out the baby... In my case I have no question about CNS. I had pesticide poisoning (first dx) which affects the CNS. My son also has CFS. He didn't develop CFS until he was 16, which has nine years after we were exposed to the pesticide. However, I was exposed more than the...
  10. Z

    Ken Lassesen's comments on XMRV

    Robin LISTSERV is an old email program used on a server (probaby a unix server) and was used by CFS-L, CFIDS assoc email group (still is). I met my husband on that list and IRC group in 1995. Might have seen you there too? :) Both my husband and I have CFS,FM and MCS. Me since 1979 and him...
  11. Z

    Dr. Charles Lapp

    If it will make you feel any better about all this... my girlfriend has had cfs/fm almost as long as i have (28 yrs for her) and was a patient of dr cheney and now dr lapp. She was a guinea pig for both ampligen and then aclyvair <?> and neither of them helped one iota. One made her feel...
  12. Z

    CFIDS and Pregnancy

    I had my daughter after I'd been ill for 10 yrs already. She's 19 now:) I actually felt better after the first couple of months of pregnancy than I had for years (except for the MCS stuff) and stayed that way until she was about 3 months old. I had older kids who helped out a bit when she was...
  13. Z

    Weird symptoms by Sandy Johnson

    most of the above Don't we all have weird symptoms? As a matter of fact that's how I have tagged this illness, the "wierd symptoms disease". I've had the anxiety thing, the tremblin' and shakin' thing, the shortness of breath thing, the light sensitive thing (at times). I have a lot of...
  14. Z

    HEADACHES - What's your treatment?

    Depending on what type of headache: * lay on the floor and have someone lightly brush your hear UPwards from the nape of the neck up (trick told to me by cfs friend that works for some kinds of headaches :) ) * tap lightly between eyebrows (husband does this one) * for sinus -pressure...
  15. Z

    Vertigo

    ...and another kind of vertigo/dizziness Years ago Dr Katrina Berne wrote a book "Running on Empty". In it she recommended another book to learn more about sensory overload, actually about the vestibular system and what all can go wrong etc called "Phobia Free". Sorry I've forgotten the...
  16. Z

    Don't qualify for Disability

    similarities USA & Canada There's a lot of similarities in attitudes etc between getting US and Can disability assistance. The ones you paid into: Canada Pension Disability ----- Social Security Dis. those it doesn't matter how much you own or if you spouse works etc. Once you have...
  17. Z

    Don't qualify for Disability

    getting disability and not My husband got ill in 1989 and should have gotten private disability at that time except for a boss who pulled a fast one (long story). After trying to go back to work several times he ended up having to get provincial help- they didn't call it disability back...
  18. Z

    Where Finances and Treatment Cross Swords

    Cort - yellow pages Check this out - http://members.shaw.ca/zs_zone/ . It's a site I started to put together several years back for a group I have for being ill and working from home. It may give you some ideas on what you could do. Mind you it is a very rough site which I never have...
  19. Z

    The Healing Power of Solitude

    My mom had a heart attack which permanently damaged her heart two years after I got ill. I used to marvel at how she could do more than I could with her damaged heart. As a matter of fact it wasn't until she got down to 15% heart function that she matched me - at which point she finally really...
  20. Z

    Listen ME: An Amazing Recovery Story

    alternative drs I've been ill almost 30 yrs now. My first Dr, who dx'd me with pesticide poisoning, was sharp, and into suppliments, health foods etc. I was fortunate enough to read about someone who'd had aluminum poisoning in the newspaper and met her. From her I learned about detoxing...
  21. Z

    Listen ME: An Amazing Recovery Story

    Hello from BC Thanks for the welcome :) I'm in BC, 11 yrs now, however I'm an american. I married a canadian who also has CFS, FM and MCS (as do I) and here I am! I also have a 36 yr old son who got CFS/FM when he was 16. Anyway we make a pretty fine pair here LOL. Shall we say life can...
  22. Z

    Listen ME: An Amazing Recovery Story

    Interesting! Wish I had more time now..but it's late :) Very interesting blog! It sounds similar to things I have wondered over time... Would love to hear if more have same results. I've known a few people who have had some improvement and always was one lone Dr. who used his own...