Welcome to HealingWell, and the CFS message board. We're glad to meet you! Although it's sad to hear you have so much pain and other health issues.
I guess I will start by saying research has shown that people who have an autoimmune disorder (which Crohn's is), have a greater chance of developing other autoimmune diseases. CFS research indicates that CFS is probably an autoimmune disease, but they haven't found out for sure. (Autoimmune illnesses happen when someone's immune system decides that some normal part of the body is a germ, and starts to attack it. No one knows exactly how it happens. For example in Crohn's, your body's immune system somehow starts to believe that the lining of your intestines is foreign, like a germ, and starts to attack it. Signs of autoimmunity are usually inflammation, swelling, and pain. The signs of autoimmunity are just how tissues react to the things the immune system is doing to it. In some kinds of arthritis, the immune system attacks something in the joints, like wrist, elbow, fingers. In Lupus, it attacks something in muscles. In MS, Multiple Sclerosis, it attacks a certain type of nerves.)
One thing that you may find, as you research CFS more, is that there are several other syndromes/illnesses which are associated with CFS. For example FMS, which is Fibromyalgia Syndrome, until recently was thought to be a unique illness unlike any other. But now, many researchers believe they might be the same illness. Then there are several others which OFTEN occur along with them. See if you notice anything interesting here. Several types of sleep disorders, migraines/other headaches, anxiety and/or depression, IBS which is Irritable Bowel Syndrome (quite similar to Crohn's, wouldn't be surprised if they diagnose you IBS instead of Crohn's), MPS which is Myofascial Pain Syndrome, IC which is a long word that means Irritable Bladder Syndrome, IE which means Environmental Illness (really, really bad allergies), and the list goes on. But those are the main ones.
So I'm not surprised to hear you mention all of those things. The 2 things that surprise me are your age, and that you were told you would be better in a few years. THAT, I have never heard. HOWEVER, I have not kept up with Pediatric CFS research (which, I know you're an adult, and after having CFS for a few years already, I conclude you are an adult--but by medical definition you're pediatric, and quite frankly CFS is different in certain ways at your age--I just have not kept up with research.)(I'm 47.)
Before I finish, I will post several links to websites that you might find helpful. Hopefully you will be able to find a doctor who understands CFS and how all these different illnesses fit together, and how to treat you. With CFS, sometimes the only thing one can do is treat each symptom as best one can. But most of the time, it is very important to look at and treat the complex of symptoms as a whole .
Wow, you are the youngest person I have ever "met", who is interested in taking charge of her medical situation. I mean, I've talked to people your age before, about CFS, but most don't seem ready to take charge. This is a wise thing to do, and I compliment you. And I also have to compliment your parents who have taught you such maturity. A couple of things that you can do now, that you might find helpful in the future, are:
1. This one, you can do yourself. Start to keep a diary, or journal, or log, or whatever you want to call it, just get a notebook and keep track of your symptoms. If it's easier for you to make a chart, then do that. Or if it is easier for you just to write sentences and paragraphs, then do that. The main information you want to write down, are 1-the Date, 2-the Symptom you're having, 3-how bad it is (use a 0 to 5, or a 0 to 10 scale, where 0 is no symptom, you feel fine, and 5 or 10 is the worst it can ever be.), 4-what you do to make it better (if you take anything, put it here), and 5-how did it work.
There are a few advantages to doing this: 1-you might notice something that either you're doing, or that is happening to you, which might be causing a particular symptom; 2-you can more easily and clearly tell, or even show your doctor what is happening; and 3-you will have a record of which treatments you've tried, and how they work.
2. This one, your parents will have to do for now. The other thing you can do now, which might be helpful in the future, is to start keeping a copy of all your medical records at home. It's a long and complicated explanation, which you will completely understand in a few years. But the sooner you start, the better.
Ok, now I will just post a bunch of links to websites that have helpful info. Some of them have lists of doctors that understand CFS and how to treat it. So maybe you can find one near where you live.
Pediatric Pain, Science Helping Children
The Pediatric Network for CFS and FMS
The CFIDS Association of America
(has a Youth Home Page, and I think youth message board)
NIAID Fact Sheet on CFS
(National Institute of Allergy and Infectious Diseases--the federal government's main CFS research agency--this is a good report)
National Sleep Foundation
I've never heard of Seroquel at all, so I don't even know if it's only for sleep or what. But the link above to the Nat. Sleep Foundation should have some good info about it.
I hope some of this info helps. Sorry if I got a little carried away. Take good care, and good luck finding support. Hopefully some of the youth sites I gave links to will turn out to be good ones.
brynn, Moderator for Chronic Pain forums
and Chronic Fatigue Syndrome forums
Posted 10/18/2004 9:52 PM (GMT -7)
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. )
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...
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.
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'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.
-House mouse's daughter.
P.S Sorry, I rambled on quite a bit, huh? ;P
Posted 1/11/2006 2:40 AM (GMT -7)
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.