Surviving Fibromyalgia: How I’ve dealt with this overwhelming disease

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Fibromyalgia is a disease that causes severe yet mysterious symptoms and effects 3-6% of the world population. It is as serious as Multiple Sclerosis (MS) or any other autoimmune disease. However, no lab test has been developed for its detection at present. Someone who has this disease is not just being lazy or cranky or hysterical. Also, it affects women predominantly which makes it easier to write off by the largely male medical establishment. It has disabled me since I was 21, but I am a survivor.

To adapt to this frustrating reality, I’ve had to learn boundaries for myself. People have called me selfish, for example, for getting the extra amount of sleep that I need, but I know that if I don’t get that sleep, I will be a mental zombie and in serious pain. It has been excruciatingly hard to hear loved ones complain that I didn’t care about them because of the limitations of my fibromyalgia. Yes, there are other things that contribute to my fatigue. It’s not all because of the fibromyalgia. But quite a lot of the time it is. Here are the symptoms I’ve lived with for 20 years:

  1. Widespread muscle and joint pain that doesn’t respond to painkillers and feels like electric shocks shooting through my body
  2. Poor circulation and numb feet and hands
  3. Unrefreshing sleep (sleeping for 8 hours and waking up feeling like you slept an hour)
  4. Insomnia
  5. Chronic fatigue and weakness
  6. Confusion and memory loss
  7. Prostatitis and chronic UTIs
  8. Depression and anxiety (full body anxiety if that makes sense to anyone)
  9. Total energy breakdown after major stressors, needing to sleep for days to catch up
  10. Digestive problems
  11. Poor wound healing
  12. And more!

When I got the disease at 21, I knew that I felt strange, but I didn’t really look different, and my tests were all “normal.” So they told me it was just allergies and that I should see a therapist. I remember hearing loved ones reject my complaints as nonsense. If I was diagnosed with MS at 21, I would have been showered with assistance. Instead, I had to walk alone through the desert, trying to feel better and dealing with my inability to keep up with others through Herculean efforts. Then, when I was 30, I found a good treatment for my condition, Dextromethorphan, which is the primary ingredient in cough medicine. It is now being studied for fibromyalgia as an effective treatment, but at the time it wasn’t. So when loved ones found out that I was using cough medicine, they treated me like a junkie and ostracized me. I was also denied Social Security disability payments because they said I was a cough medicine addict. I had no other treatments at the time, and so I used what I could find to survive. It was medicine.

Now, I know without a doubt that I have fibromyalgia, not because of a fancy lab test but because I have found treatments that eliminate 80% of my symptoms. I know what it’s like to live mostly without the disorder after suffering with it for 20 years. I’ve had to find these treatments outside of the medical establishment, but thanks to my gods, guides, and real friends, I’ve been able to forge a path to health.

I still have really bad days, like today because of an avalanche of stressors that have overwhelmed me. But I know that I can at least survive. I have 20 years of debt and baggage that I have to drag behind me, because when I had no answers, I had to go into debt to survive by purchasing countless alternative treatments out of pocket. And on top of this, fibromyalgia definitely contributed to my losing court battle for visitation with my kids because being attacked for being transgender in court led to full body breakdowns. I can’t deal with stress like the average person. My whole being breaks down. And yet, here I am, a survivor.

There is no fancy ad campaign or “would you like to donate a dollar to fibromyalgia research?” at the grocery store. We as a tribe have had to find treatments for ourselves. My chief treatments are meditation, low-dose naltrexone, lyrica, exercise, vitamins, herbs, sleep meds, CBD, dextromethorphan, a TENS unit, and self-compassion. I’ve had to learn that surviving is ok. I don’t need to be whatever “success” society is telling me I have to be. I’m pretty proud of myself for just surviving to this point with this condition, let alone my being born transgender and bisexual which complicates this to another level entirely.

If someone tells you they have fibromyalgia, listen to them, because it is an important admission. If someone said that they had cancer, you would give them your open attention, so I urge you to do that with this condition. We need help. We are suffering. Some of us have found a patchwork of solutions to get a modicum of peace and stability. But others haven’t.

Because we are not able to withstand the thousands of daily stressors in modern mechanical/industrial society, we often have internalized shame because we cannot contribute to the collective productivity as much as our fellow citizens. But, I have had to accept that sometimes, I’m going to let my boss down; I’m going to have to call in sick more than the average person; and I’m going to have to listen to the voice in my head that says “fuck them, you need to rest!” There is such a feeling of alienation in modern America when you are viewed as someone who is not being a proper slave to the machine. Most people wouldn’t state it that way, but when you’re on the bottom, certain realities of modern society become glaringly obvious.

If you have this disease, be strong, keep fighting, and don’t close yourself off to love. It can be overwhelming. It can be frightening. It can be awful. It can fill you with rage and resentment. You might look at others and be jealous of the health they take for granted, but I don’t think this will help. I’ve been there. It hurts. This is hard. But peace is a wonderful medication, and it requires letting go of resentment. I try to do that every day. People give me shit for things I can’t control, and I get back up and keep going and don’t forget to laugh and smile.

As Martin Luther King Jr. famously said: “If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.”

Keep going. In surviving this disease, you can learn lessons about existence that others can’t. I’ve learned acceptance. And now I know how to love.

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