There are plenty of things I take for granted because I’ve survived with this illness nearly my entire life. I was lucky to experience more than a decade of living with minimal symptoms, from birth to age 15, not becoming a full-fledged #Spoonie until High School. Having Juvenile Fibromyalgia is tough. Predicting that the version of Fibro I had then would differ from the Fibro I live with now, just wasn’t feasible.
This illness is a living, breathing, evolving being. Fibromyalgia never stands still, so neither can we. I used to cross my fingers and wish it to suspend in time long enough for me to pin it down in one place. I never could. Instead, I strive to accept its vacillating nature by acknowledging new symptoms, and recognizing the disappearance of old ones. Now that I know change is inevitable, I can find a little bit of peace in its consistence transience.
What do I mean by that?
Something to consider: This illness changes, develops, regresses, and progresses. I’m now 35 y/o and have endured it for 20 years. Looking back, I can see that my Fibromyalgia has evolved by cycling and recycling. Sharp pain in my “tender points” marked my High school years, and a realization I was more exhausted than my buddies after regular teenage activities. When a group of my friends would have a sleepover at someone’s house, I had an internal anxiety around having to be the one to sleep on the floor or couch rather than a bed. I anticipated the pain and discomfort that would come of that, but assumed others had the same fear.
College was dotted with more acute inflammation in those points, extreme lethargy, and knee pain that lead to a humiliating tumble down a flight of stairs. But, I’d experience longer stretches of time between what I now know to have been “flares”.
After graduate school things spiraled downward. I experienced dizziness, loss of concentration, and weeks without sleep. Nighttime brought excruciating leg pain, conveniently occurring between 1:00 and 6:00am. (Sarcasm is a terrific way to cope!) My sensitivity to cold became more severe, keeping me out of the ocean on beach days back home in Santa Barbara, CA.
Suddenly, my 2-martini (straight-up) system on nights out had me falling asleep after four sips of my first cocktail. There was a joke I’d become a “cheap date”, using humor to mask the rapid advancement of my chemical sensitivity.
When I took notice of these changes, I met with my neurologist, and we created a medication regimen that actually helped my pain. I took time to accept the side effects of those meds and learn to cope. But, I took longer to find a way to explain those side effects to people in my life. (Imagine being the ONLY sober person at my bachelorette party!) Importantly though, my pain was more manageable because of this low dose treatment.
I was getting better. What happened?
5 years thereafter, around 30 y/o, the pain came back. I had enough living as a zombie, not being able to cope with the side-effects of the medications anymore. Maybe I was tired of fighting drowsiness, nausea, and unbearable dry mouth. Or maybe my illness itself was indeed becoming worse, but masquerading around as drug side-effects. Either way, I was beginning to feel the depression many Spoonies experience. My list of meds was longer than my grocery list… and I’m a chef!
Having been on this cocktail for roughly 5 years it became difficult to know if individual drugs were effective anymore. Gradually, and through partnership with my neurologist, I pulled off these meds one at a time. The intention was to determine which were effective, and which were more a habit than a help.
Lunesta for sleep; nope. Liquid Melatonin coupled with a “cleaner sleep process” was sufficient. I couldn’t fall into R.E.M. with Lunesta, so why be lethargic the next day from lack of sleep AND this drug in my system?
Savella for pain; nope. I was continuously sick with this medication. The nausea never went away. Several doctors insisted it’d disappear over time, but you’d be right to assume it never ended. Taking it with a meal or on an empty stomach didn’t help. Waiting an hour after eating, or pre-planning to take it an hour before dinner made no difference. Nothing helped. A chef who gets nauseous at the sight of food? Not going to work. I lost a lot of weight, and being thin to start, I wasn’t someone who’d needed a loss of body mass. My nightly dose of Savella became a dread, causing upset and anxiety. Once I was off of it, I realized it hadn’t been treating the pain.
Imitrex for migraines; nope. Given one can only take this a few times per month, it was clearly a dangerous drug. Occasionally it worked, sometimes it merely took the edge off. Eventually it did nothing. Most notably, Imitrex didn’t address the underlying issues leading to the migraines: muscle tension, constant fatigue, and chronic dehydration.
The list goes on.
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You want me to try that one medication again?! Fibro vs Conventional Pain
Through the experiences I illustrated above, I learned for myself that medicines that’d been effective for years, suddenly worked like sugar pills. Over time, I’ve spoken with many #Spoonies. Some lived with this illness since before it had a name. But most who reach out to me are “Newbies”, the newly diagnosed. When it comes time to develop a treatment plan with their doctor, I hear the same point time and time again. They tell me their doctor is suggesting they try meds that didn’t work for them in the past to treat migraines, menstrual cramps, etc. (What I call conventional pain.) Why try them again for Fibro when they didn’t prove effective for these other issues?
It’s crucial to recognize treating Fibro vs conventional pain is profoundly different. There may have been medications that were ineffective for your headaches, pulled muscles, arthritis, etc. Those same meds may indeed be helpful now to treat the pain specific to Fibromyalgia. Maybe not. But trying various drugs, doses, and combinations under the supervision of a physician, can be vital to your quality of life.
The inverse is true as well. What do I mean by that? Well, you may discover a few medications with tolerable side effects give you relief from some Fibro pain. You are set, right? Maybe. In a few years you may detect one or more of those pills just don’t work the same anymore. That’s when it’ll be time to try something new and yes, initiate the process of testing meds and doses again. The best way to guarantee an outcome YOU can live with is to be the captain of your #Spoonie team. After all, you are the only one who feels the benefits and shortcomings of any wins or losses. Take control, advocate for yourself, and bring your list of questions (WRITTEN) to every doctor appointment.
As I mentioned in my introduction, this illness is a living, breathing, evolving being. If you have a diagnosis of Fibromyalgia, it’s part of you now. For the time being, this malady isn’t going away. So as we wait for a cure, our best bet is to understand that it’s continually changing and roll with the punches. Follow its lead and deal with it as it comes. Take time to mourn the changes while never falling too far behind as it develops and evolves.