7 things about fibromyalgia

I ran into an acquaintance yesterday I hadn’t seen in several years. We used to work in the same building. I’ve always admired her. She is poised, calm, mega-smart, the boss of the place where she works. 

She came to yoga class yesterday at the studio I regularly attend. We chatted briefly and, while I was introducing her to the instructor, she shared that she had recently been diagnosed with fibromyalgia. This took my breath away. I think I sort of see her up on a pedestal, and the news that we shared something so impactful stunned and excited me.

We’re getting together for coffee in a couple weeks. I am anxious to hear her story. I have been putting together a list of things I want to share with her when we meet. I don’t want to overwhelm her, but this list is the most important stuff I’ve learned in the past year and I think it’s important to tell her. I want to share it with you, too!

1. When I was diagnosed in August 2016, my doctors at Mayo Clinic talked a lot about the importance of relaxation, social activities, art, hobbies, reading and other things. It angered me at first. You’ve just told me I have a chronic illness (which felt like being handed a life sentence), and you’re saying I should color and read and go out with friends to make it better? How does that make sense?? Here’s the thing I learned a short time later that made it click. 
We have a front brain and a survival brain, and only one can work at a time. The survival brain, the thalamus, turns on pain signals. The front brain handles this artsy stuff they talked about, like coloring, reading and socializing. The more I use my front brain, the less my thalamus is engaged. It is the essence of the art of distraction. Another thing about the thalamus: the more it turns on (with pain), the easier it is to turn on. Nerves send pain signals to the brain. The more often that occurs, the stronger those signals get. Pretty soon, those nerves have so much work to do, they bring in help to keep up with the demand of sending pain signals to the brain. They recruit other nerves to send these pain signals. What should look like a gravel road going to the thalamus turns into an eight-lane neuro-superhighway. Coloring, reading, — blogging–, socializing, help your brain put its attention toward the front brain instead the thalamus. Over time, giving your thalamus less attention regarding pain can actually reduce the number of lanes on that superhighway.

Resource: Mayo Clinic Fibromyalgia and Chronic Fatigue Clinic, Rochester, Minnesota

2. Observe what noise does to your energy levels. I think we are all accustomed to being around a lot of noise, whether it’s loud music in a restaurant or the noise of 40,000 people at a Major League Baseball game. The more I pay attention to the presence of noise and protect myself from it, the better I feel. Noise overstimulates my brain and that exhausts me. I keep earplugs in my purse at all times and have used them at sports games and even restaurants.

3. I wear a Spire. It tracks my breathing and gently buzzes me when I haven’t taken a deep breath in a few minutes. Deep breathing is one of the only reset buttons we have for the vagus nerve. Deep-paced breathing and its impact on the vagus nerve have been shown to reduce pain in fibromyalgia patients (Mayo Clinic). Spire has made me aware of times I’m feeling tense, such as when I’m driving or sitting in intense meetings at work. It reminds me to breathe and stay calm. As their commercial states, it’s like a Fitbit for my emotions.

Resource: https://spire.io/

4. I didn’t know much about fascia a couple years ago. Largely ignored, it is one the largest systems in our bodies. It encases and envelopes all our muscles and organs. Fascia consists of connective tissues. If you’ve ever processed a deer during hunting season or cut up a whole raw chicken, fascia is all the white stuff you see in and around organs and muscles. Fascia plays a huge role in fibromyalgia pain, or at least it does for me. Learn more about it. And check out yin yoga, which provides great benefits for fascia health.

Resource: The Complete Guide to Yin Yoga by Bernie Clark

5. Sugar is an inflammatory substance. I have been eating a no/low-sugar diet for a year and it has reduced my pain significantly. I have a sweet tooth, so this isn’t always easy or fun, but the benefits are well worth it for me.

6. Read this book: The FibroManual by Ginevra Liptan. It’s written by a doctor who has fibromyalgia and treats people with fibromyalgia. I refer to mine regularly; it is full of highlights and flags and notes. I love it.

7. My friend, Katie, is a nurse. She recently attended a continuing education class on chronic inflammation and came back with loads of amazing information. I’ve heard lots of talk about probiotics over the years, but have always chalked it up to another health trend. After talking to Katie, I started taking probiotics. Here are some reasons why. A) Nintey percent of our serotonin is made in the gut, not the brain. Serotonin is a neurotransmitter. Us fibro folk need to pay attention to this. I’m reading more about it. B) Our gut contains tons of different microbes that live in various territories. If our gut balance is off, different microbes move into other microbes’ territory and take over. This isn’t how the system is supposed to work and it can mess up our system. Probiotics help keep the right microbes in the right territories. B) Microbes release GABA, which have anti-inflammatory actions. I’m still reading about that one, but anything I can do by way of ant-inflammation, I’m going to do. D) Last one. Microbes and gut health can impact REM. I don’t get enough REM, so I’m tracking my REM with a Fitbit to see if probiotics make any difference.  

This list isn’t a guarantee and it’s not going to work for everyone, but these things have made a positive difference in my life in the past year. I hope they might help you, too.

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