The best way is to accept it and moderate it in a moment-by-moment exercise. The stress of the “fight” will only make the pain worse for most with fibro. My new normal is that I am in pain every second of every day. I avoid unnecessary stressors which include movies and tv shows that are too intense.
If a sporting event causes “tension and release” that is excessive for me, I stop watching. If a food causes symptoms, I stop eating it. Part of fibro is a dysregulation of the peripheral nervous system which means that our bodies may overreact or underreact to strong inputs through our senses and emotions.
There are lots of normal things that are no longer normal for me. I have stopped fighting my new limits and have learned to accept what I can and cannot do. It is a process of grieving the loss of function and celebrating what remains.
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I have learned that I must do moderate movement and small amounts of rest continuously to function. I sleep because we all must even though I know that the lack of activity through the night will increase the cramps that must be worked out in the morning.
But I slowly work and move through the cramps in order to function. I want to remain in bed because I wake up exhausted, but I know that a lack of moderate movement will mean that my cramping will get worse instead of better.
I take Lyrica, Wellbutrin, Lexapro, something for sleep, and something for a learning disability. I am consistent with my medications and have tried many to find a good mix for me. I accept that this is all that the doctors can do for me.
The “battle” is one where people expect that there is an answer to get better, and there is no one right now. We can learn the coping mechanisms that work for us and use them. I have better days now than I had before because I move moderately, stretch mildly, rest often, set boundaries with people, and have lowered my expectations for what I am able to do.
Fibromyalgia and Chronic Fatigue are survivable, and I can honestly say that I am a very happy man who deals with grieving the life that I lost every day. It is a process. I had a therapist. We saw each other a lot. I have learned how to disconnect a bit from my pain. I have learned how to engage in activities where the pleasure and payoff are more than the pain and costs. Those are different for each person.
The pain seems unbearable at first, but we can habituate to it as we repeat to our brains over and over that it is not a signal that something is going to harm or kill us. If we can learn that this pain signal does not mean that a tiger is trying to eat us or that cancer is present, then we can help the body relax and attend to it less. It is a process, and it sucks. But it is better than the alternative.
Please also understand that most doctors do not understand the disease and that opioids like Vicodin and Percocet (hydrocodone) may make fibro pain worse instead of better for many people with fibromyalgia.
I also use downward social comparison to help my mental state. Can you imagine having this disorder a thousand years ago with no medications, no heating and air, no choice in foods, and no support groups? We are even way better off than the people who had this 30 years ago and who faced humiliation and shame for their lack of activity.
Acceptance is a key survival strategy. Grieving is the pathway to acceptance. I still grieve every day about the things that I once could do and no longer can. I grieve the things that a “normal” person my age can normally do. But I come back to acceptance and a place of well-being in the midst of my pain.
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