The Unwinnable Battle

I fight fibromyalgia every step of the way. I have adapted, found workarounds, and figured out how to be productive even under some of the worst of the symptoms. All of them, that is, except for one.

So far, there is one symptom I can't beat. It takes over and renders me helpless. I have discovered nothing that I can do about it. Once it hits me, I am down for the count. I can do nothing.

Unfortunately, it is also one of the big three main symptoms- fatigue. While the fatigue common in fibromyalgia is often referred to as chronic fatigue, what I am talking about here is better described as super fatigue. Yes, the pain of fibromyalgia keeps you tired much of the time. But that is not what I mean here. This is not about just being tired.

I can feel it approaching like a rushing freight train bearing down on me. With some sustained effort I can fight it off for an hour or two, but it will eventually hit me, and once it does, that is it. Imagine suddenly feeling like you have not slept in days. That by itself is physically painful. I ache all over. I have to lie down. Once I do, I am gone. Unconsciousness comes quickly, and usually lasts for two or three and sometimes more hours.

When I awake, I do not feel refreshed. It is more like coming to after a beat down. I still ache all over. I move sluggishly. I often feel some nausea. The image that has often popped into my head is of Han Solo falling out of the carbonite capsule and plaintively uttering “I feel terrible”.

Many people with fibromyalgia deal with fatigue, and when you look at lists of symptoms, they typically include Chronic Fatigue Syndrome. CFS is a similar, perhaps overlapping or related condition to fibromyalgia that is also little understood. Many of the symptoms of CFS are often found in fibromyaligia sufferers, but that could also be due to the fact that fibromyalgia has so many symptoms that it is bound to have many in common with other conditions as well. CFS is also almost impossible to diagnose. Unraveling CFS from other conditions that can cause chronic fatigue is also difficult.

Like fibromyalgia, there is a lot of controversy about what exactly is going on. Right now, even less seems to be known about CFS than fibromyalgia. There is no approved drug treatment. The few treatments they do have, like cognitive behavioral therapy and graded exercise therapy, have limited results and make some patients worse.

One therapy for CFS that does seem to help is called pacing, a form of energy management. It is based on the observation that patients become worse after minimal exertion, so they essentially teach people to learn when to stop and rest so that they do not do a level of activity that triggers their symptoms.

A study published in the journal PLoS One last October from Haukeland University Hospital in Bergen, Norway, seems to provide evidence that CFS is an autoimmune disease. Injections of the cancer drug Rituximab, a drug that suppresses the immune system, relieved chronic fatigue symptoms in 10 of 15 patients. There were also studies in 2009 and 2010 that seem to link it to a viral cause, thus boosting the autoimmune theory. This also makes a lot of sense since so many have reported flu like symptoms before the onset of CFS. The research is not conclusive, yet.

For me, though, I have not observed any relationship between physical activity, the amount of rest I have had the night before, or any other factor. The super fatigue comes, usually in the late afternoon, and usually in a cluster of several days in a row. It then goes away for awhile. It may come during periods of pain, or even during periods when my pain levels are relatively low. I may already be feeling tired, or I might be feeling fine. I am skeptical that there is a specific easily observable trigger for it.

When I read about CFS, I don't feel that it really describes what I go through. I am tired a lot, but I am in a lot of pain much of the time and my sleep does get disrupted from that, which would also be a reasonable explanation for fatigue by itself. When I get hit with the super fatigue, it is nothing like just being tired. It is like nothing I have ever experienced before, except perhaps for the time in my twenties when I worked three straight days without sleep doing the hard physical labor of rigging and lighting a stage show. At the end of that I was also down for the count, unable to think clearly, unable to remember if that round thing I last ate was a hamburger or a donut. I hurt all over. The difference was that I can get a similar feeling not in three days of constant labor, but in a very short amount of time no matter how rested I am.

While fibromyalgia and CFS are often linked, my personal experience leads me to see them as two very different things, and the body of evidence seems to be moving in that direction as well. I do not feel that I actually suffer from chronic fatigue. Ii makes more sense for em to explain that I suffer from bouts of super fatigue, and it is the one thing I can't beat or overcome.