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.
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