UPDATE, JUNE 2013: Breakthrough In Fibromyalgia Research

At the 2002 Southern Comfort event in Atlanta, I struck up a conversation with an adorably charming man about our respective pursuits (Americans, and southerners in particular, are so wonderfully chatty; once we Canadians get over our horror of actually, gasp, speaking to strangers, it’s a lovely experience). After I mentioned Trans Health, we got on the subject of fibromyalgia. He said that in his experience, many trans men suffer from fibromyalgia, and often the condition is somewhat alleviated by supplementation of testosterone. This was the first I’d ever heard about this, and I was intrigued.

Fibromyalgia and FTMsNeedless to say, I am aware of no clinical data which is specific to FTMs. Chronic pain and myalgias are still relatively poorly understood, not necessarily in clinical terms, but in practice and treatment. Many doctors are still happy to suggest that it’s all in the patient’s head. Well, considering the neurological component to it, it is pretty much all in your head, but that doesn’t mean it’s imaginary.

Having fibromyalgia is not unlike living in a permanent state of having the flu. Recovery from activity is impaired, and there are widespread muscle aches and pains, as well as a general physical malaise and fatigue. The pain of fibromyalgia can take many forms: nonspecific achiness, burning, shooting, stabbing or throbbing. It may be worse in the morning, particularly in areas that receive a lot of use. It can be experienced as muscle or joint pain, or both. Common areas to experience the pain are neck and upper back, shoulders, hips, and knees.

Fibromyalgia can be part of a constellation of related disorders which appear to have a common origin and/or modus operandi. For example, folks with fibromyalgia are also more likely to suffer from anxiety disorders, irritable bowel and bladder syndrome, sleep disruptions, and chronic headaches. It could be said that fibromyalgia and these other related conditions are characterized by a heightened response to particular stimuli. If environmental and pain stimuli are TV signals, most folks are watching a little box with rabbit ears. People with fibromyalgia are hooked into a giant satellite dish and get 500 channels at full volume.

One of the more compelling hypotheses about fibromyalgia, particularly relevant to trans folks, is that it is related to imbalances in neurotransmitter regulation. The chemicals which send signals within the brain and all over the body appear to be disrupted in fibromyalgia sufferers. Most of us are familiar with the notion of clinical depression being a relationship between external stimuli and internal chemical balance. Events or incidents, physical and psychological, can trigger a depressive episode. It appears as if fibromyalgia operates in a similar fashion.

I say this is relevant for trans folks because while there are no observations about fibromyalgia in clinical literature, there are some about trans folks demonstrating various types of symptoms of anxiety disorders. Which makes perfect sense: for lots of trans folks, the process of coming to terms with oneself in a world which is not yet welcoming is a project which inspires plenty of angst. The chicken and egg question, of course, is whether trans people are inherently prone to experience higher levels of anxiety and anxiety disorders, or whether experiencing anxiety is a healthy response to an unhealthy situation (i.e. the difficulty of being trans in an environment which is generally hostile to trans-ness). In addition, fibromyalgia episodes can be triggered and/or exacerbated by psychological stress.

In physiological terms, sites of injury and trauma are often extra sensitive to future risk. If you injure your back once, for example, your chances of doing it again, and experiencing pain in that area, skyrocket. If you’re already in a weakened state from malnutrition, you increase your chances of getting diseases such as TB which are no real risk to healthy people. In the case of fibromyalgia the same might be true: either you have a predisposition to have this heightened awareness of pain, or some traumatic event (physical or psychological) triggers it. No doubt many trans folks can name several traumatic events or experiences which occurred as part of the process of self-definition and transition. Could there be a relationship, complex as it might be, between the various types of trauma which one is likely to experience as part of being trans in a trans-unfriendly environment, and a consequent heightened sensitivity to anxiety-related disorders and myalgias? The body speaks many languages and one of them is pain. Is the pain and fatigue of fibromyalgia a kind of narrative of trauma?

It has been demonstrated that pain is a highly subjective experience. Pain, rather than a thing, may be thought of as a relationship between stimulus and response. We have all had moments where we hurt ourselves and didn’t realize it. We may not have felt pain at all, or we may suddenly start to experience pain the moment we notice the injury. Different people have different levels of pain awareness, and pain tolerance. Non-trans men have been shown to have lower levels of pain awareness than non-trans women, though the jury is still out on who tolerates pain better. Not surprisingly, non-trans women are more likely to suffer from fibromyalgia. I have heard anecdotal reports about trans men feeling better once they transition and start hormones. Whether this is due in part to the psychological relief of transition, the effects of the hormones, or the suppression of some mechanism of formerly female physiology is as yet unclear.

Though it seems that fibromyalgia is primarily neurological in origin, its relationship to the mechanisms of inflammation, and its connection to other inflammatory disorders suggests that treatment for fibromyalgia might include treatment of the inflammatory state in general. Carbohydrate intake is proportionate to the inflammatory response, and decreasing carb intake has been shown to decrease inflammation. Omega-3 fatty acids, of which fish oil is a good source, are an excellent general anti-inflammatory supplement, and for therapeutic purposes may be consumed in large quantities, in the range of 5-12 grams daily. You could eat a can of mackerel every day, or just take fish oil capsules if you don’t want the neighbourhood cats salivating all over you. Vegetarians can try walnuts and walnut oil, evening primrose, or borage oils, which are also high in omega-3s, though not the same type as fish oils. Cut down on stimulants such as caffeine.

Managing anxiety and psychological distress is a trickier issue for trans folks. Medication may help, though between the injectables and the anti-androgens and the Propecia, etc., probably many folks feel as if they’re taking enough damn medication already. And trans folks may be in a situation where the source of their anxiety cannot, for the moment, be eliminated. If one is lucky enough to have a good counselor, then this is certainly worth mentioning, and attempting to work through. Many folks with anxiety, regardless of its origin, do benefit from habitual incorporation of conscious anxiety reduction techniques such as deep breathing.

Despite fatigue, exercise is nevertheless beneficial. It can help create a positive physical environment and assist in reducing anxiety and depressive symptoms, as well as fatigue. It does not necessarily reduce pain, though I have known folks for whom it does. The key is to choose the right type of exercise, the right frequency, and the right intensity. In the past when I have designed programs for people with these types of concerns, I have taken a few things into account:

  • what the client likes to do and feels good about; trans people often find gyms anxiety-provoking given the change room issues
  • what is gentle enough to do regularly but stimulating enough to be beneficial
  • what is versatile enough to incorporate “good days” and “bad days” in terms of fatigue and pain levels

The best activity program appears to be a combination of:

  • gentle cardio such as walking (or aqua-aerobics if one doesn’t have bathing suit/change room issues), to get the circulation going, increase energy levels, and control fatigue
  • yoga, which helps with relaxation and body awareness
  • weight training, which helps prevent the loss of strength and muscle tone that fibromyalgia sufferers experience

Walking is pretty self-explanatory stuff. For yoga, there are lots of classes and instructional videos available. One of my faves is the Ali McGraw Yoga Mind and Body video, and I’m not just saying that because of the cool Dead Can Dance soundtrack, the trippy desert visuals, and hot-looking people in it.

With weight training, however, it is essential to choose exercises and intensity carefully. A bodybuilding paradigm is entirely inappropriate for someone training with fibromyalgia. You do not wish to pump till you puke, go for the burn, go hard or go home, or any other crap like that. The trainee must figure out how much s/he can exert, and then work just under that level. So, let’s say you know that you can do 15 minutes of activity before fatiguing. Instead of trying to attempt a regular workout of 30-60 min, do one or two 10-min workouts a day instead, or even several 5-min workouts. In the same vein, if the trainee knows that 3 sets of squats at once will be a problem, try 1 set instead, done more frequently.

In terms of intensity, higher intensities should be avoided, as should large volumes of work. Think quality over quantity. A good warmup is essential. Free weights are probably better than machines, as they allow for greater flexibility in determining the range and movement of the exercise. Calisthenic-type exercises are great for folks with fibromyalgia, in part because they tend to be lower intensity (though the trainee can adapt as s/he likes), and also because they can be done with minimal equipment, at a time of the trainee’s choosing. This is another advantage of free weights too. A pair of adjustable dumbbells, a swiss ball, and a bit of floor space are all anyone really needs, and this setup allows folks to do a little exercise whenever they are able, at their own pace, without worrying about having to go out to a gym. See the workout for people with disabilities in this issue for ideas about gentle but challenging training.

This article represents some early thoughts about trans folks and fibromyalgia. If this is part of your experience, please write me and share. It’s essential to start compiling some anecdotal data on this so that we can puzzle through the complexities of this condition, and make better recommendations for treatment and care.

A good site for more reading is www.myalgia.com.

Other Related Articles:

UPDATE, JUNE 2013: Breakthrough In Fibromyalgia Research: Pain Is In Your Skin, Not In Your Head

“…mismanaged blood flow could be the source of muscular pain and achiness, and the sense of fatigue which are thought to be due to a build-up of lactic acid and low levels of inflammation fibromyalgia patients. This, in turn, could contribute to the hyperactivity in the brain.’ The hyperactivity in the brain may account for the insomnia many patients with the condition experience.”

With its vasodilation effect, could testosterone ultimately prove alleviating for trans men who suffer from fibromyalgia? (Editor’s note: Data on testosterone and vascular reactivity is limited and often conflicting and few related studies involving trans men exist to our knowledge.)