Posted 10/18/2004 9:52 PM (GMT -7)
Hi Cara
Snap ! Me too, Crohn's and CFS. Plus the occasional side order of Seasonal Affective Disorder, 'cos I live in the North of Scotland. (Famous for sea fogs and rain. cool )
Where I am, there's virtually no specialist help - the GI clinics are swamped with work and underfunded, and there are no specialists on CFS or ME in Scotland, quite possibly the whole of the UK. (One just gave up - no funding.) Mention CFS here and you get tagged as a malingerer. A few more years and I'll retire, if they don't stop !
So I've done lots of reading - I'm a science and medicine inspired bookworm - and I'd agree with everything Brynn says. He obviously has in-depth sources I don't, but everything he says fits in with the theory I go by. This is that sometimes a pathogen comes along and bypasses the immune system by virtue of having cell wall receptors like the body's own cells have. Then the body starts to attack all receptors of that type, and hey presto! you have an auto-immune disease. (Or maybe the pathogen manages to linger on undetected, and causes CFS. Who cares ? Same result.)
Whatever. Keep researching, cross-reference your sources to check reliability, listen to the patients (here) and ask the doctors to give their reasoning, most of them will be floundering. They do try, but it usually takes a good ten years for the truth to sink in...  yeah
Posted 12/23/2005 12:02 AM (GMT -7)
KLONAPIN HELPS ME SLEEP LIKE A BABY IT HELPS ANXIETY AND RESTLESS LEG SYNDROME WHICH MOST OF US HAVE. REG SLEEP PILLS WONT WORK HALF AS GOOD AS THIS!!! I TOOK SEROQUIL- FAVOROTE MED I NEVA SLEPT SO WELL IN MY WHOLE LIFE AND I HAD NO PAIN EITHER BUT I WAS SLEEPING ALL DAY 2 SO I HAD 2 GIVE IT UP!!
love to hear from u.
                           
                          joci
 
28 yr old from mass. i got fibro, migraines, anxiety scholiosis and ibs-d.i also have difficulties with tollerating meds! and having major chronic fatigue also acid reflex, astma, allergies and insomnia-at night. im tired all day.

Posted 1/9/2006 2:57 PM (GMT -7)
Klonopin & ambien is the absolute best for sleep take them both at bedtime & you will sleep like a baby!!!
Posted 1/9/2006 3:29 PM (GMT -7)
i Cara,

I'm actually house mouse's daughter but I'm writing because I hope to encourage and help you if I can.

I'm 17, almost 18, and have had CFS for four years. This isn't any indication of how long you'll ha ve CFS for, of course, despite the similarity of our ages. During my time with this condition, I've learned several things that I'd like to pass on. I'm not too good on the medical side, but there are a few pieces of advice I'd like to offer.

First of all, remember: you WILL get well. It's a question of when, not if.
Secondly, this may sound weird, but if you feel like crying, try to find a place where you can do it and do so. Don't keep your feelings bottled up if you can help it. Sometimes after you cry you can feel better, too; something to do with chemicals released by the brain or something. I dunno. :P But it just helps to cry; sometimes I've wondered whether it's okay to feel sad when my chemicals get messed up and there's nothing to feel mad, sad/whatever about, but in the end I've come to the conclusion that even though my feelings can sometimes be put down to just chemical reactions, rather than how I really feel about my life in itself, it's okay to cry to let it out. This may be a weird piece of advice, but please keep it in mind.

If you're having trouble sleeping, it's good to be able to find the right medicine to help you to get a better night's rest. I'm on melatonin tablets, something naturally produced by the body, and it just helps me to relax. It took a little while to work but now it's helping me get to sleep easier. There are a few different medicines out there that can help with getting to sleep, though; if you decide to try one be careful and I hope you find what's right for you.

I don't know if you have the same trouble, but I find it very hard to express how I'm feeling, yet I almost unconsciously really want to do so. But I just can't seem to find the words to explain it, since sometimes I don't even really know what it is that I'm feeling. What I find helps is to write poems (usually using imagery to convey how I'm feeling, but not always), stories, play the piano, or sing/compose songs. Of course, I don't let other people see/read/listen to them, but it helps me just the same. It doesn't matter if you're a great writer/poet/singer (I'm not, lol) or song writer, it's just that it might help; especially if you feel, either now or in the future, like how I feel about not being able to say how I feel or explain it to anyone.

As well as this, try to rest. It can be hard, frustrating (something I find the hardest), and etc, but if you do too much it's easy to go back. I'm not sure what stage you're at, but I just want you to be careful so that you feel better quick. Sorry if that sounds weird. :P

As well as this, if you can find a good community online (like this one, and there are others on all sorts of topics too, from games and anime to practically anything and everything else) with good people, then it can help you feel like you're getting interaction with people, even if you can't get out for socialising as much as you like. Diversion is a great, great thing. Reading, watching TV, games, writing and listening to music can help. Of course, I don't know where you're up to, so this may or may not be so important for where you are right now.

All the best. Hope you feel better soon, and I also hope this has helped. Again, I can't offer medical advice very well, but I hoped this has helped to address or partly address any other worries you might have.

Cya!

-House mouse's daughter.

P.S Sorry, I rambled on quite a bit, huh? ;P
Posted 1/11/2006 2:40 AM (GMT -7)
Hi Cara
Sorry to hear you are troubled w/ this DD. (That's message-board speak for darned disease.)

I took sleeping pills for a while, but my dr. told me they can only be used for a short time. I have found relaxation or self-hynosis tapes are very effective at putting me to sleep, altho I seldom sleep for more than a few hours.

I have been trying various supplements for the past 20 some years to try and get some of my old energy back. So far, I have not found the magic bullet. But I did have an interesting experience some years ago. I tried some Chinese mushroom pills. It was incredible. I was energetic, felt 20 years younger. Alas, the effect only lasted one day. I continued w/ the pills, but they had no more effect than M&Ms.

Keep researching and posting. Good luck.

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