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Re: [GIWorld-Hepatitis] I've been lurking

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  • wim landstra
    Hi.Thanks a lot Alley!!.t.s so bad that she is now on welfare because they don.t recognise this fibro thing as a disease otherwise she would get
    Message 1 of 7 , Mar 16, 2005
      Hi.Thanks a lot Alley!!.t.s so bad that she is now on welfare because they
      don.t recognise this fibro thing as a disease otherwise she would get
      sick-benefits.The only favour they granted her is that she does.nt has to
      apply for work.We.re now looking for partime work,couple of days a week
      because believe me even in Holland you cannot live a decent life on
      ----- Original Message -----
      From: "Shshonee (Alley)" <shshonee@...>
      To: <GIWorld-Hepatitis@yahoogroups.com>
      Sent: Wednesday, March 16, 2005 2:49 PM
      Subject: Re: [GIWorld-Hepatitis] I've been lurking

      > Hey William,
      > Fibro can be a catch-all term for any set of symptoms that act like it.
      > For many, there are specific pain points and symptoms, but there's nothing
      > written in stone. It can vary from person to person. A lot of hep C
      > people have fibro symptoms, and one could argue whether it's "really"
      > fibro or just a phrase used to term the side effects of HCV or some other
      > unknown culprit.
      > Regardless, fibro hurts like hell. I'm sorry your neighbor is having such
      > a problem. Some people have luck with special diets. I feel better when
      > I do fewer carbs and drink a lot of water, that sort of thing. That
      > doesn't cure it, but makes me feel better overall. I haven't been kept to
      > the bed with it, but there's days I sure wanna stay in bed, especially
      > when it's cold outside like today. I ache all over. Even lying in bed
      > hurts.
      > One thing I do is try to find out what triggers a fibro flare (what we
      > call it when we feel bad suddenly, for no explainable reason). Keeping a
      > diary for several months or even longer will help with that. It's a
      > nuisance, writing down how one feels at different times of the day and
      > what one eats and does, but sometimes that's the only way to see any long
      > term relationships we'd otherwise overlook. Then again, there may be no
      > relationship, but usually, most fibro sufferers find that there are some
      > "triggers" and knowing these and avoiding them, or at least being aware of
      > them, is one step closer to relief.
      > Depression is a big component of fibro, like it is with any chronic
      > problem, even Hep C. Our bodies get worn out from fighting the problem,
      > and our little pea brains (well mine is a pea brain lol), is part of our
      > body, whether we like it or not :), and it gets worn out too. Often,
      > people with chronic conditions are depressed and it's not the same causes
      > as other depression, which may have no identifiable phsyical cause (as
      > long as you're not counting brain chemistry other than that associated
      > with a known chronic condition an identifiable cause, because you know,
      > I'm no scientist about what causes depression and other mental illnesses).
      > However, it may not be the same, but it can manifest itself in the same
      > outward result.
      > I see a psychiatrist who specializes in people with chronic conditions. I
      > drive 40 miles across 3 towns to get to him (I live in Grand Prairie,
      > drive through Irving, past the Texas Stadium where the Cowboys play, and
      > across Dallas :). But he's worth it. He explained a lot to me, but that
      > was a few years ago. Suffice it to say, all this stuff is on the web.
      > Sometimes I have to go and read the fibro webpages to remind myself that
      > hey, it isn't in my head, I'm not lazy, that it's OK to take the
      > occasional pain pill so I can function.
      > Good sleep is also a problem with people with fibro (as it is with any
      > chronic condition). Her doctor may already be trying to work on the
      > different areas to relieve stress and good, regular sleep is one of the
      > biggest factors in fibro. The fibro disrupts whatever it is in the brain
      > that allows for a good rejuvenating sleep. The body needs an adequate
      > amount of stage 4 sleep to repair itself. When the body misses this stage
      > for long enough, muscles burn, the brain doesn't function properly, etc.
      > In people with fibro, this is absolutely essential. Even one night of bad
      > rest can make several painful days for a fibro sufferer.
      > I had to do sleeping pills for several years after doing treatment because
      > it had so screwed up my body's ability to sleep more than 2 or 3 hours at
      > a time. I still have my pills, but rarely use them anymore. I know when I
      > am stressed or don't get good sleep for a day or two, I have to take one
      > for a night or two until I can get back into a good sleep routine.
      > Excercise is another problem for people with fibro. We hurt, so we don't
      > move around enough usually. I'm still working on this as I am very lazy,
      > but things like Tai Chi, Yoga, and other stretching excercises are good. I
      > like to sit on the floor in front of the TV and just stretch my body while
      > I watch.
      > I find my fibro is worst in winter, in cold weather. Even with socks on,
      > my feet will ache from the chill. I have to wear triple socks around the
      > house, and extra warm clothes as well as keep the house warmer than most
      > people. I keep heating pads handy and a heater under my desk so I don't
      > go crawl back in bed to stay warm.
      > Restless leg syndrome is another biggy for fibro and hep C. Some docs
      > don't understand it, but the symptoms can be alleviated somewhat. The
      > symptoms can be helped with medication, usually muscle relaxers, pain
      > pills, that sort of thing. There are studies here in Dallas at
      > Southwestern Univ, where they also do Hep C research, on RLS. I hope they
      > find some good info. It will keep a person from getting good sleep and
      > make a fibro sufferer more painful.
      > No, there's no "cure" for fibro. We don't even know what causes it. My
      > advice: she needs to take her health into her own hands and figure out
      > what makes her worse and what makes her feel better and work from there.
      > Even here, many doctors don't "believe" in it, but it doesn't matter what
      > they believe, it's here and it hurts.
      > My computer is making funny noises, so that must mean to stop rambling and
      > see what's causing all this noise!
      > Hope that helps. I'll refer some links in a bit.
      > Alley
      > www.alleypat.com
      > [Non-text portions of this message have been removed]
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