Brains Gone Wild

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.