Episode 6: The Exhausting Cycle of Fibromyalgia
As if out of no where, suddenly I would be down for 3 weeks, chastising myself for my weakness and unaware of a 10 week cycle I had been perpetuating for most of my life. For 7 weeks of this cycle, I would drive myself hard at work or play, then like clockwork, at the 7 week mark, I was down. Either an illness would get me, or my body would give out and could not get out of bed. I was done. Until now, I always thought that it was normal to work, dance, exercise, or whatever activity I was doing until I dropped.
I have since learned this is called PUSH & CRASH.
The technical term is "Post-Exertional-Malaise", or PEM, characterized by the worsening of fibromyalgia symptoms after pushing beyond personal emotional or physical limits. When PEM hits, it can last for hours, days, weeks, or even months. For me, it usually lasts for a period of 3-5 weeks. In that time, I have shifting pain head to toe; my hair follicles all the way down to the tips of my toenails ache. I am fatigued - as though I am in a foot race uphill that never ends, my appetite is gone, and the only activities that appeal to me are sleep and doom scrolling. Basically, I feel like I have been hit by a MACK Truck and I just have to wait to "recover".
The Fibro Crash:
What this means for me is hitting the breaks and stopping EVERYTHING. I do the things I have to do: I get up, I go to work, I come back home, I sit, I cook, I eat, and I go to bed: "Lather, Rinse, Repeat". But sometimes even that seems like too much. This is when my depression sets in. I am an active person. I need to move.
But when this happens, when the Fibro Crash happens, the very thing that makes me feel alive seems to be out of reach and I nose dive into depression. In this state, I feel like I am a burden and I start to go down the rabbit hole of everything in the world that is wrong with me. It is a sinking feeling for me to think that I am not living up to the world's expectations of me. Like I said, it's a rabbit hole, and I just spiral my bippity boppity brown self down it emotionally until that one little voice in me says STOP! Pause, and ponder: why am I here? It could be days before I get here, or weeks. But it is in this moment that I somehow peel myself off the couch and try to do something about it. In my recent experience, which is right now, since I now know what this is, it is a real thing, and it isn't "in my head" I want to discover how to avoid this Push and Crash. Here is what I found out.
5 Steps to Avoid the CRASH:
1. Pacing. As I said in my previous post, "Movement is Medicine", pacing is KEY. Pacing for fibromyalgia should be as precise as possible. That means pace out activities and break things down into smaller parts.
For example, I don't need to write a blog post all in one sitting. Maybe I focus on the intro one day, the research the next, writing the findings after that, filling in the body of the blog the 4th day, and finally, on the 5th day, add the pictures (the most satisfying part), edit, and post.
This is also true for my exercise routine which consists of 5 different sets of movements. If I do each set sometime during the day, and NOT all at once, I have a better chance of having success and not sending myself into PEM than if I do all 5 of them at the same time.
2. Planning. Because pacing is key, planning is imperative! Knowing that energy is a finite resource, being aware of what is ahead for each day can help to manage that resource.
Scheduling the days activities based on energy stores will help avoid doing too much. I am aware that my energy is a finite resource. And for me, that resource needs to be conserved and monitored closely. When I use my energy, it is like withdrawal from a bank account. I need to pick and choose how and when I will spend my energy and like money, that takes planning, scheduling, and clearly identifying what needs my attention and what does not. Scheduling and plotting out how the day will look gives a visual representation of the days activities. William Collinge, a scholar of chronic illness, describes the 50% solution: think about how much has to be done, how much energy you have, and cut it in half. Oof! That's depressing, especially if you are used to operating at 120% as I am. But! If I am trying to avoid the CRASH, this advice is a good start.
3. Exercise. This is absolutely counterintuitive to what I want to do when I am hurting. But! Again the BUT! Exercise is the most effective treatment that does not include prescription drugs. Experts say exercise, strength training, and stretching can reduce pain and help manage this disorder. According to Álvaro Murillo-García et al., "physical exercise is the non-pharmacological therapy with the highest level of evidence to reduce fibromyalgia symptoms...[and] dance has emerged as a relevant therapy to improve quality of life"
The choices are limitless, but low impact aerobic movement is best. Another key is to avoid overexertion. Swimming, walking, and cycling are good options. However, so is dance therapy and yoga. As I wrote in a previous post, Movement is Medicine!, dance is a natural pain reliever because it releases endorphins which interact with the same receptors as opioid medications.
And Yoga engages the parasympathetic nervous system which is responsible
for slowing the body's systems down, conserving energy, and countering the "flight or fight" response of the sympathetic nervous system. I cannot say enough about movement as medicine. It works, and a good physical therapist can help you design a program that is sensitive to your bodies needs.
4. Reduce Energy Expenditure: I covered most of this in the "planning" section of this post. I had mentioned earlier that I think of my energy as being stored in a bank account and each activity is a withdrawal. As some point, if I am not careful, I am going to overdraw that account and the result is a fibro - CRASH.
The only way to recover and refill that account to a positive balance is to rest. Rest is the only deposit that this account will accept. But how do I know when I have reached my limits and to avoid being overdrawn? Well, I have to know my body and listen to it. This is where I fall down. This is still my learning curve. Let's learn together.
5. Listen to your Body. Dr. Susan Higgins, a doctor of physical therapy, implores her fibromyalgia patients to remember to listen to their bodies, "Patients with fibromyalgia have good days and bad days. It’s important to not over exert yourself on days you’re feeling good". Overexertion is the "PUSH" and the result is the "CRASH". Limits are different for every person .
Knowing your limits is essential for living a healthy and satisfying life with fibromyalgia. Listening to your body encompasses everything we have already talked about in this post: pace yourself, plan your activities, find exercise that is suitable for your personal needs, and keep a positive balance in your energy account so that you are able to do the things you want to do.
I have yet to master these 5 steps. As of this post, I am currently experiencing PEM because, I did not manage my energy expenditure. In fact, this CRASH is what prompted me to write this post. I want to do my ever-lovin' best to steer clear of the pain and exhaustion I am experiencing today. Hopefully, these five tips will help you do the same.
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Karen Palmen, EdD is a veteran educator in Saint Paul, Mn. She teaches Dance and English at Saint Paul Central High School. She has an active TikTok page that features humorous, political, mental health, and educational content (kickin it with karen). And a a dormant YOUTUBE channel with the same name, featuring fermented foods and other cooking oddities.
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