Re: [GIWorld-Hepatitis] I've been lurking
- 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@...>
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
> 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.
> [Non-text portions of this message have been removed]
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