The more you study neurological
problems the more you come to understand that we know very little
about them. The brain is still, by and large, a big mystery. When
things go wrong with it, it can devastate your life, and there are
usually no easy answers.
Fibromyalgia has such a wide range of
symptoms, symptoms that come and go, that it is very difficult to
diagnose. That is especially true when several of the symptoms also
afflict people without FM, such as restless leg syndrome, irritable
bowel syndrome, and chronic fatigue syndrome. These are also poorly
understood neurological conditions just by themselves.
Then you have things like Lyme disease,
which can have several FM like symptoms. Some people have both Lyme
disease and FM, and some researchers believe that Lyme disease may be
one of the triggers for bringing on FM. One theory is that FM may be
just waiting for some very strong stress, like a major accident or
disease, to activate it. Lyme disease is very difficult to detect,
although unlike FM, there are blood tests that can verify a
diagnosis. Unfortunately, these tests can produce false negatives.
Certainly people have been misdiagnosed with FM when they actually
have Lyme disease. Since you can have both, and it is not at all
particularly uncommon to have both, this has lead to a linkage
between the two in some people's minds.
This theory that trauma to the body can
trigger FM sort of makes sense. In my case, there was no particular
trauma, unless you count my pericarditis that happened 12 years
before the onset of FM. If you allow for that long a time period,
then you could blame it on the trauma that everyone has in their life
at some point, which does not seem very scientific. The idea that
trauma can be one of the triggers may explain why so many people with
FM also have other serious conditions along with the FM. Those
companion conditions might have been the trigger for the FM. No one
knows for sure yet, though.
FM is so staggeringly difficult to
diagnose because you have to rule out almost everything else first.
As I wrote in Smorgasboard - the Buffet of Symptoms, it seems like you get
a taste of almost every neurological disorder out there.
There is a new study from the CDC on a
fascinating condition that seems related to an FM symptom but takes
it much further. It is very strange and mysterious, and the study
does not provide a lot of answers.
It is called Morgellons disease. People
with it have a sensation of bugs crawling on their skin. I have
mildly experienced this myself, but only on occasion. I feel things
crawling on my skin but can look at it and there is nothing there.
Others with FM have reported this as a much more intense sensation.
With Morgellons, the problem is that
those who experience it have an obsession that it is real. Those of
us with FM just dismiss the sensation as a symptom and ignore it like
we do with everything else. Morgellons sufferers become obsessed with
the idea that threadlike fibers, larvae, worms, or fuzzballs are
growing out of their skin.
The CDC study has found no organic
explanation for this condition. Here are the main points from the
study:
- The condition appears to be uncommon, most frequently affecting middle-aged Caucasian women.
- The reported skin lesions seem to be self-inflicted from persistent scratching and rubbing.
- There is no evidence to suggest an infectious cause, nor is there an indication of an environmental link.
- Laboratory analysis of fiber and foreign materials found in skin lesions were mostly cotton, typically found in clothing or bandages.
- About half of the study participants had one or more co-existing medical, including psychiatric, illnesses. Treatment of these illnesses may improve symptoms.
- This unexplained condition has many similarities to a
psychiatric condition in which patients have unusual skin sensations
that they attribute to an infectious cause, known as delusional
parasitosis or delusional infestation.
So, is the CDC saying that this is a mental illness? Not at this point. The study did not specifically set out to demonstrate that. There does seem to be an obsessive component to this condition, similar to what is found in delusional parasitosis, where people become convinced they are infested with parasites.
In fibromyalgia, the pain sensations we have feel very real. We can accept that they are a symptom, though, caused by a misinterpretation of brain signals in the brain. If we feel bugs crawling on our skin, we don't feel a need to prove it is really happening. For Morgellon's sufferers, there is that added component of insisting that something is really there. They become obsessed with bringing in threads to prove their case. This adds an irrational and obsessive component that does seem to indicate a psychiatric condition.
This does not mean that the condition does not feel real to them, or that they genuinely suffer from it. What I wonder is if you remove the obsessive component, if you can convince people it is not an actual disease, do the symptoms go away or do they just cope better with them. In other words, is the insistence it is real a symptom on top of the symptom of the sensation itself?
There is still a long ways to go in understanding and treating this difficult condition, but the CDC study at least heads research along the right track.
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