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ME/CFS and the Magic of the Canine Factor
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Sore Throat following physical activity

Discussion in 'Immunological' started by Waverunner, May 14, 2012.

  1. SOC

    SOC Moderator and Senior Member

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    judi --
    May I ask, in order to better answer your questions -- are you relatively new to the illness, or just diagnosed?

    I have students coming any minute, but I'll come back and answer your questions is a couple of hours or so.
  2. judi

    judi

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    I've been going to doctors and saying "somethings wrong since about '05" they kept telling me I was perfectly fine and I embraced that even though in the back of my mind I knew otherwise - then in '08 I had a day where I became so sick that I ended up in a hospital, in '09 I go the sore throat that lasted for almost 2 years and that's when I diagnosed myself with CFS. I spent the money to get tested for XMRV - they said it was positive for what thats worth in light of all thats happened since. Since then I focused on the medical community for help, I wanted to believe in doctors, they convinced me I was depressed and gave me a ton of pills, the pills made me feel better and then it turned ugly, I am newly off drugs and now I'm trying to learn the nuances of this illness so I can try to help myself and stop relying so heavily on doctors. I've read a lot of things on this forum and, most of what I read is over my head. I'm asking questions that most already understand, but I am desperate to understand how to take care of myself, because I feel that so far I've done more harm to myself than good and I don't want to continue down that path
  3. judi

    judi

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    Winfield, Illinois

    and thank you for anything you can share, don't tax yourself over it, but any bit helps
  4. SOC

    SOC Moderator and Senior Member

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    Thanks, judi, that gives me a context to work in. I didn't want to be telling you things "everybody knows" if you were an old hand. :)

    First, very few doctors know much about ME/CFS and what they do know is often dangerously wrong, so relying on your local medical community can be problematic. Probably the best thing you can at this point is get to an ME/CFS specialist. It appears that the sooner you get good treatment, the better your prognosis is. No guarantees. There are very few guarantees with this illness.

    Most of us came through the same pattern you described -- being told there's nothing wrong, then being told we're depressed -- so we know where you're coming from. We all had to get educated and it takes time.

    Try going here http://phoenixrising.me/ and click on the various tabs at the top of the page. About ME/CFS would be a good place to start. That should give you some background info to help you understand what we're all talking about.

    Good luck!
  5. nanonug

    nanonug Senior Member

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  6. judi

    judi

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    Winfield, Illinois
  7. ukxmrv

    ukxmrv Senior Member

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    I remember Dr Ramsay talking about exercise intolerance. He was the UK doctor who did a lot of the early work and was involved with the Royal Free outbreak.

    He spoke about how exercise reactions was the hallmark of the disease and how patients could react to tiny amounts. One of the things he spoke about was how more exercise especially when already suffering PEM could become culmulative and get worse and worse with the patient getting sicker and sicker, weaker and weaker.

    I've noticed that if I have PEM the best thing to do is stop and rest as much as possible.
  8. ukxmrv

    ukxmrv Senior Member

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  9. taniaaust1

    taniaaust1 Senior Member

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    relapsing- remitting pattern means one is pushing then crashing with symptoms... once a bit better pushing and crashing again etc
    That pattern can lead to a permanent worsing of the condition (base line level) if done often enough or hard enough.

    As you are very new to the condition and still learning the basics.. I'd like to say I suggest to work on gaining a good overall understanding of the condition before you go delving into the different "theories" for it.. there are a heap of theories out there, none of them proven thou. Get a good grasp of the basics and terminologies first or it will be overwhelming.

    eg .. here is a couple of things which will help give you a better overview of the whole condition. There is a good symptom list at http://wwcoco.com/cfids/bernesx.html
    The Canadian consesus Doctument for Medical Practioners also is quite easy to understand and will help you to gain some of the understanding you need. http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf (you could print it for easier reading.. also can be handy when dealing with doctors).

    Seeing you are also new to the illness, you need to find yourself a good knowable ME/CFS doctor as it's needed and even if you are doing okay now most of the time (.things can suddenly go downhill fast and leave you in a boat without a paddle one could say, also some of the experimental treatments can work better the less time some have had this illness).

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