I’m “blursed.” I have a loving and supportive family, an amazing wife, great friends, and that includes my dog, a career that is both secure and fulfilling, and yet there is something I carry with me that perpetually threatens to break my spirit. My fellow Reddit fans/addicts know the meaning of “blursed,” but for those that don’t, it’s one of my favorite portmanteaus – it means to be both “blessed” and “cursed” at the same time.
I have fibromyalgia. The “F-word.” Fibro for short. It sucks (understatement). My primary care physician calls it a “constant companion.” I’ve had it for a little over ten years, and during that time, my symptoms have gotten progressively worse (that’s the part of it that scares me the most).
To live with it means that it is quite complicated to try to answer the colloquial “how are you doing?” My mom was actually the one who recalled an injury I suffered that seems like the most likely trigger. I was helping someone move and, in my youthful bravado and sense of invulnerability, I did a very unsafe lifting/pushing motion with my neck and shoulders. It hurt immediately, then lingered for days to weeks, but I shrugged it off — pun most certainly intended — as a muscle tear. Many months passed before the weird and unnatural symptoms started.
My injury happened during my gap year between college and medical school. Soon after I started med school, I started to notice that my muscles seemed tighter than they should be — not just near my injury site but all over my body. There were what felt like little pebbles in between my forearm muscles; several areas of my body were very slightly tender; I knew something was wrong, but my symptoms had such a minor impact on my day-to-day functioning that I decided not to seek medical attention right away. I had other priorities, namely, trying to become a doctor, making new friends, scoping out girls.
Before I go any further, I should probably explain what fibro is. The name itself breaks down into “fibro” (fibrous connective tissue), “my” (muscle), “algia” (pain). It is a chronic condition that is characterized by widespread pain, especially at tendon insertion points, like elbows, hips, etc.
Neuralgia (nerve pain) and paresthesias (abnormal sensations such as numbness and tingling) can also be present. In fact, fibro pain can be thought of in three categories: achy, flu-like pain, fascial (deep) pain and hyperalgesia or “central sensitization,” which is increased sensitivity to pain. A lesser-known symptom is hyperacusis, which is a painful sensitivity to certain sounds, especially loud, harsh or shrill ones.
Fibro is often triggered by physical and/or psychological trauma. Fibro is associated with poor sleep, chronic fatigue and anxiety/depression. It appears to be linked to changes in how the central nervous system (CNS) processes pain signals. One prevailing theory is that it is caused by chronic inflammation. Some sources describe the body of a fibro sufferer as being in a constant “fight or flight” state.
Surprisingly, scientists and doctors have known about it for hundreds of years. In the 1600s, it fell under the umbrella term of “muscular rheumatism.” In 1904, British neurologist Sir William Gowers dubbed it “fibrositis” and described it in greater detail. The last 50 years or so have seen a significant acceleration of our understanding of fibro and available treatment options.
Fibro symptoms are highly variable and dependent on factors such as stress, sleep, ambient temperature and others. The prevalence is estimated at around 3 to 5 percent of the world’s population, making it incredibly common! It predominantly affects women, especially of middle age, and is almost certainly under-diagnosed in men. Children can have it, too, unfortunately. Fibro sufferers can experience significant disruption to their careers, social life, and relationships. There is no cure.
Back to my story.
In med school, my symptoms were still mild. I slept well (when I wasn’t cramming for an exam). And I was playing multiple sports, albeit with prolonged soreness afterward. I was doing great academically and socially. Fast forward to the end of med school — I had fallen in love with my future wife and we “couples matched” into pediatrics residency together.
My adult life was really taking shape.
That being said, I knew I had to get my fibro symptoms checked out. But I was in residency, and that means that my health and wellness took a backseat. I eventually scheduled a visit to talk about my pain. I was then referred initially to a neurologist then a rheumatologist.
After some basic tests to rule out other causes, I did brief trials of gabapentin and a muscle relaxant, but neither helped.
On a few occasions, I overheard conversations amongst my own colleagues who were questioning whether fibro was “real” or not.
My symptoms continued to slowly get worse. By the time I started residency, I had already completely given up on weightlifting since it caused severe and sustained pain for several days. It was around this time that I removed all the tags from the insides of my shirts because what once felt like gentle stroking against my skin (or nothing at all) was now a scratching/scraping sensation. I also started getting regular massages. It was around this time that I was really struggling with the “why me?!” question.
But life marched on. I graduated residency, and soon I was a practicing board-certified pediatrician.
The meaning of hyperacusis becomes painfully clear (these puns are just too easy) when you’re a fibro sufferer listening to the amplified high-pitched scream of an infant through a stethoscope. I started seeing a pain specialist who suggested taking Lyrica (pregabalin), doing physical therapy, and periodic trigger point injections. Regular aerobic exercise has also helped — think endorphin release.
Of note, Lyrica actually promotes deep sleep, and so it conferred me that benefit as well. It took me a while to realize that the combination of being dependent on melatonin, waking up several times per night, and waking up unrefreshed was not just “residency hangover” but that I, in fact, had insomnia! I weaned myself off melatonin and instead added a different non-prescription sleep aid that has served me well.
Since then, my fibro management has been a game of trial and error. I’ve sought out additional medical opinions, fervently read and researched, all while battling the formidable foe that is the psychological aspect of my pain. It would be difficult to exaggerate how profoundly fibro has impacted my quality of life. Amidst perseveration, regrets, failed treatments, etc. I’m constantly teetering on the edge of the abyss. Depression and defeatism are just ready and waiting to swallow me up. But my plight has made me a more empathetic person. I’ve also tried to maintain perspective on all the positive aspects of my life.
To my fellow medical professionals who are still undecided as to how “real” fibro is, I hope this gives you clarity. I hope that you will extend that extra bit of grace and compassion to patients who have it, or who are living with any form of chronic pain.
To my fellow fibro warriors, the struggle is real — but you are not alone, and there is hope. Our understanding of the disease process is constantly improving. Between traditional — aka allopathic and complementary/alternative treatments — there are many potential avenues to relief. Make sure that you get other things ruled out to ensure a proper diagnosis, and seek out a health care provider who has experience treating fibro and will form a therapeutic partnership with you. I strongly recommend “The Fibro Manual,” written by Dr. Ginevra Liptan, who has the disease. She outlines how to approach this monster in a step-by-step, evidence-based fashion.
And to everyone out there who has been in a situation where they don’t know what to say to a person in pain, my advice is to start with, “I’m so sorry that you’re suffering.” It may be the only thing that he or she needs to hear at that moment.
“To live is to suffer, to survive is to find some meaning in the suffering.”
Rahul Gupta is a pediatrician.
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