If you look at a list of symptoms that indicate an autonomic dysfunction (the autonomic nervous system controls heart and breathing rates, body temperature, and digestion), you might mistake it for yet another list of fibromyalgia symptoms.  Take a look (from http://www.healthline.com/health/autonomic-dysfunction#overview1):

1. Dizziness or fainting on standing up
2. Exercise intolerance (inability to alter the heart rate during exercise)
3. Sweating abnormalities – either too much or too little
4. Digestive difficulties – bloating, diarrhea, constipation, loss of appetite…
5. Urinary problems – incontinence, incomplete bladder emptying
6. Sexual problems in both men and women
7. Vision problems – blurry vision, inability of the pupils to react to sudden bright light

It’s not a slam dunk, but the components are there, and I have problems with 6 out of 7. So I found an article looking at the levels of autonomic dysfunction in fibromyalgia patients compared to “normal” people.

The study at autonomic symptoms both objectively and subjectively. In other words, they looked at signs, which are measurable or verifiable (such as the presence of hives – hives is a sign), and they looked at symptoms, which are not measurable, and rely on self-reporting by their study groups (mostly by questionnaire).

Bottom line: Patients reported more significant symptoms than the measurable signs picked up.  There were lots of symptoms, but few signs.  Isn’t that the story of fibromyalgia right there? We have all the symptoms but none of the signs.  It’s the same with thyroid.  They can test my thyroid until the cows come home, but it’s never going to show an abnormality, even though I have all the symptoms of a hypothyroid disorder.

The second bottom line is that the researchers suggest that therapy for fibromyalgia should focus on function rather than symptoms.  They suggest that they look at how well patients function rather than how they feel.  They point out that most of the patients were not as deconditioned as they expected to be, although more patients were eliminated from participating in tests due to other physical problems.  Patients were able to perform the incremental exercising needed to measure VO2max tests, to do the 6-minute walk test, and the other physical activities they needed to do, and they did it without experiencing significant increases in pain.

I like the idea of therapy focusing on function rather than symptoms. Chasing symptoms is like Alice chasing the White Rabbit down the rabbit hole, and taking medications can be like her nibbling on the cake and growing or shrinking uncontrollably.

However, there’s a drawback to that focus, and the researchers very quickly and possibly inadvertently point it out: looking at psychological factors as being the cause for patients not engaging in “vigorous physical activity.”  Specifically they mention “fear avoidance.”  Not moving for fear of exacerbating pain.

While I would argue that definitely patients should always focus on function over symptoms because focusing on symptoms exacerbates them, I have to come down on the opposite side with physicians.  Fibromyalgia has been proven to have physiological causes, even as it gets worse with psychological factors such as stress.  Physicians, I personally think, need to acknowledge to patients that yes, fibromyalgia is a physiological disorder and not call it a psychological disorder.  It’s like telling someone they’re hypersensitive.  It doesn’t do anyone any good.  Yes, patients should acknowledge that their frame of mind will make a difference, and they should be screened to depression or other factors that would impede symptom alleviation, but physicians shouldn’t only focus on it.

Symptoms without signs is possible, and there needs to be a study that can explain why people can suffer the symptoms of disorders such as dysautonomia or hypothyroidism without exhibiting the quantifiable signs of those disorders. Maybe fibromyalgia is really just that. A disorder characterized by symptoms with a lack of signs.  Huh.  I’ll have to think on that.