I've never really though about it before tonight. I was reading through the list of sub-categories and it just hit me.

I suffer from an undiagnosed chronic pain in my abdomen. At times it can be very severe. I also have a few other symptoms, such as a constantly high WBC, and the fact that my normal body temp has changed to 97.9.

But from the beginning my doc has insisted that it's very important for me to control my pain as much as possible. I haven't agreed with him, figuring that taking pain meds were at best going to give a little comfort, but not have any effect on my general health.

Well everytime I get stubborn and stop taking my meds for a while, I start to develop unexpected complications. The first time it was fibro. Then MPS. And the last time I developed a severe stomach infection.

Do ya'll think this could be due to CFIDS? When I'm in more pain, then of course I don't sleep very well at all. Could it be that lack of sleep that's making me more vulnerable to other conditions? Has it happened to any of you? I'd sure appreciate any thoughts or ideas anyone could give me about this. Thank you all.

Idealist

Idealist,

I have similar problems - the more fatigued I get and/or the more pain I have the more vunerable I am to developing new symptoms and complications.

In my case, my doctors believe it is because of the underlying autoimmune illness -- at this point they don't know what autoimmune illness it is, they just know that something autoimmune is going on, but they can't define it except to call it "undifferentiated connective tissue disease" (a fancy name for "we don't know what it is").

Anyway, I can relate to your experiences.

Have you ever tried treating the fatigue?

My doctors treat my fatigue 2 ways. The first way is that I take Klonopin and Trazodone at bedtime to help me sleep better, and the second part is that I take Provigil every morning to help me wake up and stay awake. It helps a LOT, because the crushing fatigue was constantly causing pain/symptom flares, and now that the fatigue is better the fatigue-related flares have subsided.

Have you ever been tested for autoimmune stuff? A high WBC and lower body temp can be a sign of autoimmune illness ---- they can be a sign for a lot of things, but autoimmune is one of them and a lot of people with autoimmune problems are usually mis-diagnosed with fibro, myofascial pain, CFS, etc... before the doctors stumble upon the autoimmune aspect.

Hi,

You may want to check you Thyroid function and Iron level. I am always looking at Round Earth Publishing for information. I have no affiliation with them but do appreciate the information listed there.
http://roundearth.stores.yahoo.net/relaxers.html
Click on the TSH kit and Iron kit just to read the information.

Thanks for the replies, guys.

I'm really not sure if I've been tested for auto-immune deficiencies or not. I've had an awful lot of tests done over the past four years. When I had my bone-marrow aspiration, the hematologist told me they ran nearly forty different tests on that alone. And I've had multiple scans and procedures of just about every kind.

Wittesea...I've always heard that if you start depending on meds to get to sleep, very soon your body will become accustomed to them and they won't work anymore. Then you really get messed up because you can't sleep at all. Is that just a myth? Has the klonopin worked for you long-term? I ask because my PC suggested that med once for me, but I declined based on what I had heard about it.

Anyone who knows me knows that sleep-deprivation is a very major problem for me at times. I will occasionally go up to 72 hours without any. But I'm very cautious about drugs, because until a year ago the docs had me on so many, and I really went through a lot getting myself off them. Now all I take is one pain med, xanax, and amitriptylene to help me put on weight.

This is something that I'd really like to be able to resolve. So if anyone has any practical advice, I would sure like to hear it. And don't worry, I know that you're not all doctors. I take advice for what it is...

Sleeping meds...

I have been on the klonopin for 2 years at the same dose, and it still works exactly the same.

Previous to the klonopin, I was on Ativan for 7+ years at the same dose, and it took that long for the Ativan to become slightly less effective (hence the switch to the klonopin).

I have been on the Trazodone for about 6 years - works the same now as it did back then.

I have heard of some people who have trouble with sleeping meds becoming ineffective, but I have really not had that problem. If I take my meds I sleep well. If I forget to take them I can't fall asleep, and if I do fall asleep by some miracle I have the most horrible, restless, unrefreshing sleep ever... most of my sleep problems do seem to stem for the anxiety that I have, but also from the pain and other physical stuff.

So, for me, I think bedtime meds are necessary for life.

I spoke recently with a physician who has "chronic EBV" and symptoms we all know . Anyhow, part of his treatment is to use Klonipine to help sleep at night -- he said he is dependent on it, and was not worried by it. I think we tend to shy away from "addictive" meds because they make us think of heroin addicts. Dependence is a better term -- kind of like diabetics are "dependent" on insulin.
Hope you get the help you need.

Hi Idealist -- I suffer with a myraid of autoimmune problems as well. I was diagnosed with mono at 15, again at 18 (with liver complications), and again at 21. Each time I had new antibodies. I was then told I had EBV. At 22, I gave birth to my twins, and did much better overall. At around 35, I began having abdominal pain, sometimes I would be doubled over. My OB/GYN said I was fine. I kept telling my PCP that I was having to get up several times a night to pee, and he told me "don't drink so much pop." I only drank one soda a day, and no coffee. After complaining several times (gotta love that HMO) he finally referred me to a urologist, who said I had symptoms IC (interstitial cystitis). He performed a test on my bladder (out-patient, non-invasive surgical) and diagnosed me. I wish I could say I don't have any more pain, but at least I know what it is. And I was able to cut down on the severity by watching my diet and cutting out caffeine completely. Have you ever been checked for this, or do you need to urinate often? Also, my sister suffered for years with endemetriosis, which was misdiagnosed time and time again. Just some thoughts...