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.
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)
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