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Symptom / Lifestyle Management Program for FM / CFS

Discussion in 'Lifestyle Management' started by Diva55, Mar 26, 2010.

  1. Diva55

    Diva55 Member

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    I read this on another support board. Could be interesting if you have the time / energy to attempt it.
    Not sure about computer analysis though. But I suppose if a big enough database was built up it could lead to shared patterns and therefore shared strategies for help:

     
  2. PoetInSF

    PoetInSF Senior Member

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    An excellent project, thanks for posting. Something I've been thinking about creating when I have more energy. A little too complex for my liking though. Just filling in the initial questionaire took quite a bit out of me. I would've preferred a simple activity/symptoms log with self-learning statistical model to predict crashes. But I can replace my personal log with it at least. I'll try different strategies a few weeks at a time and see what it says.
     
  3. Diva55

    Diva55 Member

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    Hi Poet
    That's great you are giving it a go.
    When I get more energy...sigh. I hope to have a good look at it.

    Keep us up to date on what the program advises and if it's helpful.

    Best wishes
    Diva
     
  4. shrewsbury

    shrewsbury member

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    Hi Diva - thanks for this. I'm interested in Poet's experience with it as well.

    I'm always interested in the source of something.

    So I looked up William Collinge. On his website he offers his 1993 publication, "Recovering from Chronic Fatigue Syndrome: A Guide to Self-Empowerment", for free.

    I find that there he lists many of the strategies that I use for symptom management - here's the table of contents:
    My concern, of course, is that he is touting these techniques as a cure, rather than symptoms management, and actually uses this quote "Although it waxes and wanes, (patients) generally head slowly out of the woods with this illness. Recovery is... clearly the rule in the majority of patients..." (a different) Peterson summarizes his perspective by stating that "This is not an interminable disability. Patients do recover gradually."

    Now - this book is from 1993, and it is out of publication, so hopefully his understanding of the disease has grown since then. Dr Peterson did endorse the book (which I find odd).

    Collinge has built a successful career. Projects include:

    Partners in Healing: Simple Ways to Offer Support, Comfort and Care to a Loved One Facing Illness, published by Shambhala Publications; and

    the Caring and Cancer Project, sponsored by the National Cancer Institute, has been completed. The DVD program Touch, Caring and Cancer: Simple Instruction for Family and Friends is now being used by cancer treatment centers, advocacy organizations, and caregivers across the country. This exciting new program enables family members to become part of the treatment team for their loved ones living with cancer. The program is available in English, Spanish and Chinese language versions.

    The Fibromyalgia Wellness Project, sponsored by the National Institute for Arthritis, Musculoskeletal and Skin Diseases (NIAMS), is currently underway and accepting new participants. If you are living with FM and would like to participate please visit the project website for full details.
     
  5. shrewsbury

    shrewsbury member

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    A point I'd be interested in is how long the timeline for a correlation between an action and symptom is. For many of us, PEM can set in anywhere from during an activity to a few days later. And relapses can occur for no reason.

    I'm actually quite intrigued - but haven't got the energy to give it a go myself.
     
  6. PoetInSF

    PoetInSF Senior Member

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    Thanks. As I suspected, it needs polishing and simplification IMO. It's asking me to remember way too many things and I can't go back and edit entries... We'll see how it goes, but I'm not abandoning my personal log for now.
     
  7. PoetInSF

    PoetInSF Senior Member

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    This is a common claim, but I'm not convinced that is the case. Once I stabilized, I could always trace to previous activities whenever I crash. (Explaining, of course, is not much of a value; predicting is). If it appears random, it could be because your threhold is so low and there is a large variance in the delay of PEM depending on the activities.
     
  8. rebecca1995

    rebecca1995 Apple, anyone?

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    For me, five days is the maximum interval between an acitivity and the delayed crash/ post-exertional fatigue. Anyone ever have delayed PEM/PEF more than five days after over-doing it?
     
  9. Hope123

    Hope123 Senior Member

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    No, I agree with IF that relapses can occur for no reason and so does Dr. Lapp, who has been treating CFS for over 15 years. So people should and can look for causes but should also accept that you might not find one and not be too hard on yourself. No one knows for sure what causes relapses -- if they did, they'd have solved half this illness.

    Dr. Lapp: http://www.drlapp.net/resources.htm#Dealing with Relapses

    Relapse is an inevitable part of CFS and FM. Just as many of the symptoms come and go in a cyclical pattern, relapse tends to come and go also. When relapses are short lived, perhaps 1-3 days, then we generally refer to them as a flare. A flare is frequently triggered by an acute stress (for example, a death in the family) or overexertion. A relapse, however, may last days, weeks, or months, depending on its severity, the cause, and how it is managed. When a flare occurs, one is advised to review recent activities and events (such as travel, illness, or special activities) that may have triggered this temporary downturn. On the other hand, I and many patients have agonizingly searched for the cause for relapses only to conclude that the majority occur spontaneously. You just have to expect that no matter how hard you try or how “good” you are, relapses are going to occur. Thus, the first step in handling a relapse, therefore, is to accept, then deal with it.
     

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