Questions I have for Fibromyalgia

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?

PatientWhy 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?

PatientI wish I could sleep . . . I am so tired . . . (poor sleep makes pain and fatigue worse)

ScientistIs 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!



6 thoughts on “Questions I have for Fibromyalgia

  1. There is something about the hormones when a woman is having her period that cause her joints to be looser. This causes more stress on the muscles, which can make them sore, tight, and painful. So extra pain during periods can be muscle related. For healthy women who are athletic/physically fit, the looser joints are not a problem and are often not even noticed. For women who aren’t as athletic (like me!) it can be a big cause of pain. (I always wondered why my menstrual cramps extended down into my legs). I have actually found that taking a magnesium supplement decreases the muscle pain, though that may be partly because I’m taking an acid reflux medicine that depletes magnesium.

    Liked by 1 person

    1. Thank you for sharing that! I did not know about the hormone-joint connection. But I have heard of increased pain during periods being partly due to low levels of oxytocin, which is one of the body’s natural analgesic molecules. It’s interesting what you said about magnesium. My exercise physiologist mentioned magnesium supplements to me the other day as well. I was going to give them a try soon.

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      1. Wow, the oxytocin thing sounds really interesting. If only there was something we could do to compensate for that.

        My PT told me one day about the hormone-joint thing. I didn’t take it seriously until I realized I had hypermobile joints and started reading up on connective tissue disorders, and all of the women who had it were saying they could predict their joint flare-ups based on their menstrual cycle.

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    2. I think there are some groups that are looking into using oxytocin as therapeutic agents. But it has been tricky because too little or too much of the hormone can mess up many other things in the body. I can usually predict a flare correlating with my menstrual cycle too, so I am feeling pretty strong about that connection.


  2. 🙂 The association of temp and humidity has been reported, but I have noticed in my case there is a third factor, wind. In my previous life, I am ashamed to say, I did not really believe that weather could affect someone’s pain SO much, especially if you dressed yourself well. A little may be, but not enough to make a difference of 5 points (1-10). Life taught me that it does. Inside all my winter gear, I actually wear heat patches at certain points. I have not only premenstrual flare ups lasting 10-12 days now, but now it also includes flare up of costochondritis, and on that there is no literature. During one of my worst phases, around 10 years back, there was also a period of a year, when each pm period would result in a herpes simplex outbreak with huge HUGE bullae on my lip (which got permanently scarred). There is no report of such huge bullae except in case of HIV or immunosuppression. I also had serious GERD from age 17 for 20 years, escalating to its worst peak during my pregnancy, when it was so bad that i suspect I had developed some sort of hiatal hernia. I spent the last 6 months of pregnancy unable to lie down at all (in spite of my excruciating spinal pain and pelvic dysfunction). But post delivery, I suddenly went back to the mild level of GERD I had in my teens. Mysteries of my disease! There is a serious need for research on this, more than that is being done.

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    1. Yes indeed! So many questions, and not nearly enough answers. Even the connections that have been reported, we don’t know what the mechanism is. Knowing the mechanism gives us a chance at drug targets. Without that, it is just trial and error to see what helps.

      I was really sorry to hear about all your painful conditions. I hope you are doing somewhat better now, from what you described. 😦 I never even thought about the wind! But I find myself more heat sensitive than cold sensitive (though I have never been in super frigid temperatures). The cold makes me stiff and achy, but the heat drains me in a way that I cannot fight the pain, and that is frustrating for me. I have heard that the upward pressure from the uterus makes many people’s GERD worse during pregnancy. I have GERD too (fairly well-managed for the most part, thankfully) but I have had bad periods where I felt like I was having heart attacks whenever I laid down, so I can imagine your pain. Glad that got resolved after delivery! 🙂


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