• 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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. rwinsmom528

    Is there anyone on this site who is recovered?

    Antivirals don't kill virus, they only prevent them from replicating. I believe that over the past 13 years the viruses have been replicating to their heart's content. All we can do with antivirals is to slow or stop the replication- it does nothing for the virus that is already there. My immune...
  2. rwinsmom528

    Is there anyone on this site who is recovered?

    Perhaps since you are so early into this you may want to explore antivirals. At this early stage in the game they might keep you from getting worse. Dr. Daniel Dantini has a book/ebook on Amazon. I have forgotten the title, but it has the word Fibromyalgia in it. I started out with mono...
  3. rwinsmom528

    August 8th, 2018: Understanding and Remembrance Day for Severe ME

    Thank you @Jody! I spent 5 years severely ill with nearly every symptom on the Canadian Consensus list, but I have had a couple of short-lived remissions and long relapses through the years since. Presently, I am housebound. POTS and pain are my main symptoms, POTS being the most...
  4. rwinsmom528

    Hyperbaric without extra oxygen

    Was it perhaps just due to the fact that he was male? 85% of people with ME/CFS are female, the majority of people with Fibro are female as well.
  5. rwinsmom528

    very important question!

    If you think there is even a possibility you might have ME/CFS, please don't push yourself to do any physical activity that makes you feel bad, even though you can push through it. My first doctor recommended exercise for me, convinced it would make me feel better. I pushed myself by...
  6. rwinsmom528

    ME/CFS researcher Derya Unutmaz's hypothesis on cause of ME/CFS....

    "causes the immune system to perceive that there is still a danger in our bodies – even when an infection is long gone" There we go again with saying something (such as bacteria or virus) isn't there just because the researchers can't find it. Reminds me of how Dr.s of old were so resistant...
  7. rwinsmom528

    ME/CFS researcher Derya Unutmaz's hypothesis on cause of ME/CFS....

    Yes, and how about when just thinking or reading crashes us???
  8. rwinsmom528

    trying a new method after being diagnosed with protomyxzoa

    Any updates since starting treatment for protomyxzoa?
  9. rwinsmom528

    how to explain ME/CFS to people

    Kinda feels to me like heart failure, MS, adrenal insufficiency and acquired immuno deficiency all wrapped up in one.
  10. rwinsmom528

    Article: The Obama Promise on Chronic Fatigue Syndrome

    Any news yet of the President following up with his promise?
  11. rwinsmom528

    Article: Bad Wiring? State of the Knowledge Workshop III: Systems Biology

    Regarding the decreased phenylalanine metabolism or pathway Dr. Broderick said was the main or biggest problem of the 5 main differences in pathway activity in Post Infectious CFS: The only supplement that I have ever taken that I actually feel a difference within an hour or so of taking it is...
  12. rwinsmom528

    Pacing with a Heart Rate Monitor

    Thank you for your help, paclabman. It helps to keep in mind the goal is avoiding PEM. Yes, after getting chilled I have had some PEM symptoms yesterday and today, but severity is a hard thing for me to judge. I feel like my life is one big PEM with a couple of OK times in between. My last...
  13. rwinsmom528

    Comment by 'rwinsmom528' in 'Chronic misunderstanding and overwhelming fatigue of the most miserable syndrome.'

    Sonja, You are quite a wordsmith. You have eloquently expressed my exact feelings. Your entire poem is relevant to my circumstances. "Even death has lost it's darkness and sting. And became my unreachable friend ."(Steyn) This concept has been hard for people to grasp. I remember a Pastor...
  14. rwinsmom528

    Pacing with a Heart Rate Monitor

    My aerobic threshold is 90 BPM- how do I keep under that? My HR goes to 120 to 130 just from getting up to go to the toilet and back. Does that mean I should get a bedpan? According to the Pacific University (I hope I got the name right) the HR monitor should actually be set 10% below the...
  15. rwinsmom528

    How did XMRV enter humans?/Vaccines and XMRV

    Our governemnt has already protected big pharma in that regard and has protected itself as well in that it is extremely hard to prove vaccine injury to get compensation from the government with their vaccine comensation program- mostly because docs won't acknowledge the connection between...
  16. rwinsmom528

    XMRV and MS - articles or research references

    And was it Dr. Cheney who said that the MRIs (or was it some other type of brain scan like PET?) of CFS patients looked just like those of AIDS patients?
  17. rwinsmom528

    Good News From The NIH..Patient Advocate for NIH State of Knowledge Workshop

    I agree, and I even have a son and a brother on the Autism spectrum. No offense taken here.
  18. rwinsmom528

    Good News From The NIH..Patient Advocate for NIH State of Knowledge Workshop

    Whoever is nominated, this fact needs to be emphasized as loudly as possible. We need doctors and others to know that by pushing us to do things causes permanant damage. We need doctors and others to remind us to take it easy and not stress oursevles instead of pushing us to our deaths. We...
  19. rwinsmom528

    Retracted autism study an 'elaborate fraud,' British journal finds

    I know personally (no media influence here) at least three CEOs who have told me that they were prohibited from hiring more workers at this time because of the health care law. In fact, one CEO was planning to hire someone who wanted a part time job who was already covered by her husband's...
  20. rwinsmom528

    Retracted autism study an 'elaborate fraud,' British journal finds

    Look how Dr Myhill was treated. Yes, today she won out, but look what they did to her!
  21. rwinsmom528

    Myhill wins Judicial Review at High Court

    That's the best news I have heard all day!!!!! Hooray for Dr. Myhill and all of her patients!
  22. rwinsmom528

    Age Of First Symptoms?

    You may be interested in looking at the case definition of ME/CFS you can find it here: http://www.cfids-cab.org/MESA/ccpc.html This is the Canadian definition. The CDC also has their version which you can google if you like.:Retro smile: IMO the Canadian definition is better.
  23. rwinsmom528

    Age Of First Symptoms?

    Thank you for caring. Just to clarify, I did not fit the case definition for ME/CFS until I was 42. Up until then I didn't really realize that I was that far out of the norm. (But, after I got really sick at 42 some of my friends commented to my mother that they felt like there was something...
  24. rwinsmom528

    Age Of First Symptoms?

    Looking back, I think I first noticed symptoms when I was 25 right after (or even during) the birth of my first child. (The midwives were alsomst ready to transfer me to the hospital even though the birth itself had gone just fine because I was too drained to deliver the placenta.) It took an...
  25. rwinsmom528

    Showers are very bad for me

    If you start a topic i would also be interested in following it. I want to get a heart rate monitor. Any reccomendations as to brand and model?
  26. rwinsmom528

    Comment by 'rwinsmom528' in 'Transforming NIH: Mangan Sets up NIH Email Listserve for the ME/CFS Community'

    Just signed up and plan to send a thank you card to Dennis Mangan to the address you provided. Hope that helps,too. These changes sound like something we really want to encourage. :victory:
  27. rwinsmom528

    new on empowher: "Chronic Fatigue Syndrome: Old Year/New Year Reflections"

    Thanks for the article, Jody. I am glad you are able to articulate what so many of us go through. On your blog you mention that you found a treatment that works for you and you are doing better. Do you tell much more about it on your blog somewhere? What treatment are you talking about that...
  28. rwinsmom528

    Wheelchair for people with CFS

    Thank you for your reply, Sushi. Do you know if she usues the recline feature and elevating foot rests when she is not riding in the van? If so, does it seem to take up a lot of space or get in people's way? A tilt in space wheelchair looks like this: (sorry I couldn't figure out how to get...
  29. rwinsmom528

    Wheelchair for people with CFS

    Anyone use a tilt in space wheelchair? I have a manual transport chair that people push me in, but I find that (due to POTS, I guess, or to ME/CFS) I still can't sit up for very long at all without PEM. I really went over m limit when I went to my daughters' music recital and stayed for the...