As a scientist suffering from a poorly understood condition and as a patient frustrated by its unpredictability, I have spent many miserable days and nights wondering about the many idiosyncrasies of fibromyalgia. On sleepless nights, the patient in me has a conversation such as below with the scientist in me:
Patient: Why does bad weather (actually, a change in temperature/pressure in any direction) make my symptoms worse?
Scientist: Do humans have atmospheric sensors in their body like some animals? How does that signaling work to affect pain perception?
Patient: Why does the pain get worse during my periods?
Scientist: What is the connection between hormonal levels and pain signaling?
Patient: Why does the pain get worse at night, right when I am trying to sleep?
Scientist: Is there any connection between the circadian rhythm and pain sensitivity/signaling? If so, what is it?
Patient: I wish I could sleep . . . I am so tired . . . (poor sleep makes pain and fatigue worse)
Scientist: Is there a feedback loop between the circadian rhythm and pain sensitivity? Why do patients with fibromyalgia experience alpha intrusions and not get restful sleep?
And the quintessential:
Patient: Why me? (yes, I know it’s cliche)
Scientist: What causes inter-individual variation in pain sensitivity? What genes are involved in those pathways and how does environment play a role in the development of the chronic illness?
As an epigeneticist (one who studies modifications on genes responsible for fine-tuning their function), that last question is especially close to my heart. I have a suspicion that a significant fraction of the population is probably born with genes that make them sensitive to pain perception. But only 2-4% of the U.S. population has fibromyalgia. So what factors are involved in determining who with the disposition actually develops the condition?
These are just questions for now. I have no answers for most (if not all) of them. But we need to find the answers. The more answers we have, the better we can treat ourselves, future patients, and perhaps even take preventative steps. So until then, perhaps that “why me” question is worth asking after all!