Episode 26: Rediscovering the Path to Healing - "My Fibro Life" - a Year in Review.
As I sit down to capture the essence of this moment, I'm struck by the realization that "My Fibro Life" has officially hit the one-year mark. It's kind of surreal! This blog, my digital companion, has been witness to a year of highs, lows, the messy, and the chaos of learning to live my life to the fullest with fibromyalgia. In this blog, I've embraced my vulnerability, explored my resilience, and navigated the twists and turns of my discoveries. So here's to the one-year anniversary - a celebration of growth, introspection, and the unpredictable rollercoaster that is My Fibro Life.
A year ago, I decided to embrace my writing passion to the fullest with the intention of understanding and sharing what I learn about the disorder that haunts me: fibromyalgia. And since, I have written 25 blog posts that have brought me, and I hope others, a sense of optimism and inspiration in the face of this challenging condition. Exploring the depths of my own experiences and delving into extensive research, each blog entry serves as a testament to my commitment to raising awareness and fostering a sense of community among those grappling with fibromyalgia.
So what have we learned? Here are some highlights from the most popular posts of the year:
I began the year by asking "Fibro-what"? and not really understanding that I had a chronic pain disorder that has affected me since (probably before) my pre-teens. After months of testing, I had come to the realization that fibromyalgia was real and a need to share the importance of awareness:
The reality of fibromyalgia and its symptoms cannot be understated. I, too, once overlooked and masked the signs, pushing through pain and fatigue until I found myself breaking down from sheer exhaustion. It didn't need to be this way, and now, armed with awareness, it never will be again. If you suspect you may have fibromyalgia, I urge you to consult with your doctor or healthcare professional about your symptoms. While there are no specific tests for fibromyalgia, a diagnosis is often based on widespread pain persisting for at least three months, coupled with negative results from various blood tests and examinations. Take your symptoms seriously; it's not a figment of your imagination. You may be dealing with fibromyalgia, but there is assistance available, and most importantly, there is optimism for the future.
Spending more time with the research and learning what my options were, I continued by writing about medications and therapies my doctor and I discussed. I also sought support from online communities where individuals shared their experiences managing fibromyalgia. Armed with new knowledge, I worked closely with my healthcare team to create an initial personalized treatment plan tailored to address my individual needs and challenges. In time I came to learn, that most of all, MOVEMENT IS MEDICINE!
My doctor's approach to prescribing medication for my fibromyalgia initially seemed experimental, acknowledging the challenge of treating varied symptoms. He gave me three medications that he both liked and didn't like: Gabapentin, Pregabalin, and Cymbalta. He ruled out Cymbalta because of my negative experience with antidepressants in the past. Despite his inclination towards Gabapentin, I opted against it as it wasn't approved for fibromyalgia. Ultimately, we settled on Pregabalin and essentially "hoped for the best." While he emphasized the trial-and-error nature of medications, he also recommended alternative treatments like chiropractics, acupuncture, and massage therapy. What stood out was his insistence on me consulting a physical therapist specialized in fibromyalgia, who was instrumental in prescribing targeted movements to alleviate pain and strengthen specific areas of weakness. As I am a dancer, this approach aligns with the concept of "Movement as Medicine," providing a promising and familiar path for managing my condition.
Along the way, I had to learn some things about myself as a person living with fibromyalgia. There is such a thing as "too much". Although this was not unfamiliar territory, now with fibromyalgia taking center stage in my life, I needed to learn that too much activity, too much stress, too much of anything was going to send me into a repeat of a cycle I had been perpetuating for most of my life. This cycle consisted of 7 weeks ON "driving hard" in work and play, and 3 weeks of an absolutely mind and body meltdown - a CRASH.
I had to learn about the concept of "PUSH & CRASH," also known as Post-Exertional Malaise (PEM), a common experience for people living with fibromyalgia. The debilitating effects of PEM, involving prolonged periods of shifting pain, fatigue, loss of appetite, gave me a sense of being hit by a metaphorical truck. The emotional toll is exasperating, particularly the probable descent into depression as I lay on the couch recuperating. When this happens, during a fibromyalgia crash, the activities that bring joy and vitality become challenging . Here are the 5 strategies I learned to navigate the complexities of fibromyalgia and PEM:
Pacing is Key: Break down activities into smaller, manageable segments to conserve energy. Precise pacing can significantly impact symptom management.
Strategic Planning: Treat your energy like a finite resource. Schedule daily activities based on your energy levels, and be mindful of the energy withdrawals each task entails. This method can help prevent overexertion.
Incorporate Exercise: Engage in low-impact aerobic movements, such as swimming, walking, or yoga. Despite initial reluctance, exercise is considered an effective non-pharmacological therapy for fibromyalgia, aiding in pain reduction and overall symptom management.
Mindful Energy Expenditure: Consider your energy as a limited bank account. Be cautious not to overdraw by strategically choosing when and how to spend your energy. Rest serves as the essential deposit to maintain a positive balance.
Listen to Your Body: Recognize and respect your limits. Fibromyalgia symptoms vary, and understanding your body's signals is crucial. On days when you feel good, avoid overexertion to prevent the subsequent crash.
I still have yet to master these 5 steps. As of this post, I was in the throws of experiencing PEM because, I did not manage my energy expenditure. In fact, the CRASH was what prompted me to write that post. My hope was that, these five tips will help you do the same.
I also investigated my diet, particularly my relationship with sugar. Most of my life I have eaten a LOT of sugar. Turns out, sugar could be one of the culprits. Should I stop eating sugar? Does sugar trigger fibromyalgia flare-ups? The Internet would certainly insist this is true. Or is it?
I had been bombarded by the internet shouting, "STOP EATING SUGAR! It causes inflammation, it's bad for fibromyalgia!" It left me super confused because fibromyalgia isn't definitively an inflammatory disorder. So, I started wondering: what's the real deal with sugar and fibromyalgia? The connection between fibromyalgia and sugar is intricate and often surrounded by conflicting advice. Many suggest cutting out sugar entirely. But, it's important to understand that our bodies require a specific type of sugar, glucose, which comes naturally from whole foods. Excessive sugar intake, however, has been linked to various issues, including inflammation, anxiety, depression, fatigue, and the triggering of fibromyalgia flares. My personal experiences also told me that sugar highs and crashes could impact my mood significantly. In light of these facts, my doctor advocated for reducing sugar intake to manage fibromyalgia symptoms. Here is what I learned on my journey through the "interwebs":
Inflammation: Does sugar cause it? Yes, excessive sugar can lead to metabolic disorders causing inflammation, which intensifies pain for us with fibromyalgia.
Anxiety and Depression: Does sugar make them worse? Absolutely. That sugar high and crash messes with our mood, intensifying anxiety and depression, common symptoms for those with fibromyalgia.
Fatigue: Does sugar cause it? Yep, sugar can give you a quick energy boost, but it's followed by sleepiness and tension, contributing to fatigue—another common fibromyalgia symptom.
Fibromyalgia Flares: Does sugar cause them? Well, it contributes. The inflammation, anxiety, depression, and fatigue from sugar can create a perfect storm for fibro-flares.
In this post, I had highlighted the ongoing research in this field and I stressed the importance of consulting healthcare providers before making significant dietary changes. All of this is to suggest that there is a complex link between fibromyalgia and sugar and that there is a benefit in reducing sugar intake for symptom management.
Midway through this 1st year of My Fibro Life, I had done enough research and writing to have a good idea how fibromyalgia acted in the body and what possibly triggered my flares. What I was unsure of was WHY I had fibromyalgia. If you have been reading my blog you know the role childhood trauma has played in my life. And if you are new to my blog, I am a survivor on many fronts including: emotional, physical, and sexual abuse. This abuse took place within my adoptive family and carried over into my young adult life. The trauma is as layered as an onion. Working with my therapist, I learned that trauma had a big part in triggering the pre-teen onset of my fibromyalgia and that trauma has altered the way my brain sends and receives pain signals.
The deep connection between childhood trauma and fibromyalgia has become a profound aspect of my personal journey. As a survivor, I've navigated, and still am navigating the devastating impact of past abuse on both my physical and mental well-being. In this post, I explored the profound link between childhood trauma and fibromyalgia. As a survivor, I use my story to shed light on the intricate relationship between past traumas and the emergence of my fibromyalgia. I shared how unprocessed trauma imprinted itself on both my brain and my body. In fact, I found out, fibromyalgia often occurs after a trauma has been sustained either by significant psychological stress, physical trauma, a surgery, or in many: symptoms accumulate over a period of time. In my case, I experienced the trifecta: emotional, physical, and sexual trauma. As I found out, persistent stressors stimulate the sympathetic nervous system, the system responsible for our flight, fight, or freeze response and if this system is overstimulated, as is the case with many people living with fibromyalgia, the spinal cord and brain chemistry can be changed. This change may increase the chemicals in the brain that signal pain and in the case a fibromyalgia these signals are firing too often causing persistent all-over body pain and exhaustion.
Finally, my most read blog post of the year was about medication withdrawal. By this time, I knew the most probable reasons why I had fibromyalgia, I knew how it was triggered, and I had a modicum of understanding on how to take care of myself, but something was still amiss. I wasn't feeling good. I was doing ALL the therapies: physical therapy, mental health, pelvic health therapy; I was even doing alternative therapies like massage, yoga, and "float" therapy. I was taking the medication, I was watching my sugar intake, but I was still in pain and exhausted. In fact, I had such an increase in pain and exhaustion that my concern was that the pregabalin I was taking had stopped working - and it had. It is not unusual for mediations to work and then not work. I believe that the side effects got in the way of the medication doing its job. But what was even worse was the medication withdrawal.
I never aimed to become dependent on any drug! But, must to my chagrin, pregabalin dependence can occur at even low doses. As previously stated, initially, the medication provided some pain relief and improved sleep, but after four months, it stopped working for me. Because of the side effects: weight gain (to the tune of 12 pounds in 4 months), loss of balance, and confusion, and the fact that I was getting no pain relief from it, I chose to stop the medication. However, this was not going to be as easy as I hoped. I was wholly unaware that I would probably experience withdrawal symptoms. Thankfully, I was able to work with a pharmacist because the withdrawal process proved difficult, with symptoms such as headaches, anxiety, nausea and extreme bouts of diarrhea. In fact, I experienced most of the following symptoms: Headaches, Anxiety, Confusion, Agitation, Sweating, Rapid heartbeat or palpitations, Seizures, Difficulty falling or staying asleep, Behavioral changes, Mood changes, Depression, Suicidal thoughts or behavior, Nausea, & Diarrhea. To quote my post: "I am experiencing most of these with the exception of: confusion, seizures, mood changes, and suicidal ideation. But this still means I am dealing with a significant number of symptoms from withdrawal that are interfering with daily living. As a matter of fact, I am on the couch again for the 3rd day in a row "resting" with a headache, nausea, bouts of diarrhea, surges of anxiety and sweating, lots of sweating. Eating is quite the challenge as I have no appetite and my energy is non-existent. In other words, I am not at any risk, but I am miserable".
It took a total of 6 weeks to taper off of pregabalin. Even at that slow pace, I was in a world of hurt. My final thoughts on this post were, "I will never take pregabalin or a drug in this class again if I can avoid it. I do not want to ever take a drug that is harder to get off of than it is to get on. But, I would also never advise anyone against this prescription. As with most medication for fibromyalgia, what works for one person may not work for another, and vice versa. These are my experiences: it stopped working shortly after I started taking it, I lost my balance which was detrimental to my job, and I gained a lot of weight. None of this is good for me. The process of getting off of pregabalin was brutal, and had I not followed my pharmacist's advice, it could have been dangerous. I am glad I do not take it anymore and I am glad I survived the withdrawals unscathed".
RECAP
So there you have it. As I mark the one-year milestone of "My Fibro Life," it's surreal to reflect on the journey filled with highs, lows, and the chaos of navigating life with fibromyalgia. This blog, my digital companion, has witnessed a year of growth, introspection, and the unpredictable rollercoaster that defines living with this chronic condition. The past year saw 25 blog entries aimed at bringing optimism and inspiration to fellow fibromyalgia warriors, exploring aspects from medications and therapies to the profound impact of trauma on the mind and body.
Beginning with the question "Fibro-what?" and a lack of understanding about my chronic pain disorder, the journey unfolded to delve into the complexities of fibromyalgia, Post-Exertional Malaise (PEM), the connection between sugar and symptoms, and the challenges of medication withdrawal. Each entry serves as a testament to my commitment to raising awareness, fostering community, and sharing insights gained through personal experiences and extensive research. As I celebrate this one-year anniversary, I am grateful for the lessons learned and the supportive community that has emerged through My Fibro Life.
If you enjoyed this post, share it with your friends and colleagues, and consider becoming a subscriber. If you have any tips or suggestions about how to better cope with chronic pain, leave a comment. I would love to hear from you!
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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Sources:
Palmen, Karen L. “Childhood Trauma: Does It Cause Fibromyalgia?” My Fibro Life, WIX, 24
Palmen, Karen L. “Fibro - What?!” My Fibro Life, WIX, 29 Dec. 2022,
Palmen, Karen L. “Fibromyalgia and Medication Withdrawal.” My Fibro Life, WIX, 28 July
Palmen, Karen L. “Movement Is Medicine!” My Fibro Life, WIX, 20 Jan. 2023,
Palmen, Karen L. “Sugary Suffering: The Link between Sugar Intake and Fibromyalgia.” My
Fibro Life, WIX, 23 Apr. 2023, www.myfibrolife.com/post/sugary-suffering-the-link-between-sugar-intake-and-fibromyalgia-flares.
Palmen, Karen L. “The Crash!” My Fibro Life, WIX, 27 Jan. 2023,