Owning Life with Fibromyalgia

Fibromyalgia nearly owned my life. Recently, I realized that I have to take ownership of fibromyalgia, or I would have no life at all.

I can’t say that I had an actual “ah-ha” moment, but hitting rock bottom (and dwelling there for quite some time) required me to change or die. Lyrica has definitely set me on a more even, comfortable plane, and I now feel like I have the help I need to own my life as much as possible.

I’ve been spending a lot of time on my bicycle lately, and the freedom I feel on two wheels is priceless. It’s also a lot less pounding on my body compared to running, which is theoretically helpful for athletes with fibromyalgia. My bike is a hybrid that allows me to sit up almost completely straight, a necessity with my neck problems. I sold my road bike because my neck couldn’t handle the requisite hunched-over, looking-up position. The hybrid bike is a blessing on so many levels, and I’m finding myself able to ride it comfortably for more than an hour most days of the week.

Headphones and outdoor sports have long created controversy. Some people—including me—think it’s dangerous to exercise outside if your ears are plugged and your favorite music is blasting. But fibromyalgia changes everything. The disease process creates so many life-altering limitations that especially as an athlete, any sense of freedom (and maybe a little risk) is greeted with enthusiasm. I found myself blaring classic Linda Ronstadt songs on my iPod while pedaling around town yesterday, and I loved it.

As an athlete with fibromyalgia, I’ve learned that my life is limited by pain. I’ve also learned that an off-key sing-along on the bike can make my day. “Love is a rose!”

A Few Thoughts on Lyrica for Fibromyalgia

Three 50mg Lyrica pills per day. And yes, I have weight-lifting calluses on my hands.
Three 50mg Lyrica pills per day. And yes, I have weight-lifting calluses on my hands.

I have a complicated relationship with Lyrica. It has vastly improved my life, but has also turned me into a forgetful, emotionally foggy person. I hate taking medication, and am well aware that oftentimes our over-medicated society is burying itself in toxic pills. But there came a point when it was either live or die, and I decided to take my chances on Lyrica rather than giving up just yet. I’m only taking 150mg per day at this point, but will likely go up on the dosage soon.

What’s Good

I’m sleeping 8+ hours per night for the first time in a few years. I was agonizingly scraping through life on 0-2 hours some nights, and regularly 4 hours of sleep per night.

There’s no denying my psychological connection to fibromyalgia. Pain creates anxiety, and anxiety creates pain. It’s a real bitch. Lyrica definitely whittles away at anxiety.

Initially, as in the first week or so, I had almost no pain anywhere in my body. I slept like a character in a fairytale, and would’ve slept all day if not for needing to do basic things like go to work and be a mother to my dogs.

The debilitating muscle spasms have mostly stopped. My feet no longer cramp and feel like they’re folding in half, and my lower back and quads are mostly fine. My neck range of motion is better, especially when looking up.

I’ve been on it for a little over a month now, and have only had one day of paralyzing, flu-like fatigue.

Strangely, Lyrica seems to help my body respond well to ibuprofen. I try not to take ibuprofen (or any drugs, for that matter) unless I’m really hurting bad, and for years, it was like swallowing nothing. Now, combined with Lyrica, ibuprofen seems to take the edge off the full-body soreness and aches.

Lyrica hasn’t seemed to affect my athletic ability at all. In fact, since I’m hurting so much less, I can do more and not be completely wiped out.

Alcohol usage hasn’t seemed to change the way my body reacts to Lyrica, but I only drink 1-3 beers per week.

What’s Not Good

As far as side effects, other than the forgetfulness and sometimes feeling like I’m looking at life through beer goggles, my appetite is huge. Lyrica is reported to cause weight gain, but for me, it’s just caused a major appetite increase, which of course can lead to weight gain if I don’t practice restraint. Another aspect of the reported weight gain that I suspect is this: since Lyrica cuts down anxiety, I don’t obsess over food as much as I used to, which means I eat a bit more crap now, especially when out with friends.

A lot of the pain came back after two weeks of taking Lyrica. Mainly, my neck pain and spasms have returned, although they’re definitely not as bad as they’ve been in the past.

It’s expensive. Even with insurance and a manufacturer’s discount card, I’m paying $137 for a month’s supply of Lyrica. That number should go down some once my giant prescription deductible is met.

The forgetfulness and fogginess were so bad during my first week on Lyrica that I almost burned my house down. I’d put a pot of dry kidney beans on the stove to par-boil before putting them in the slow-cooker, then immediately forgot what I was doing.

I went outside with my dogs to enjoy a day off work and read in the backyard. After awhile, I started smelling foul smoke. I peaked over the neighbors’ fences to make sure their houses were okay. It wasn’t until I turned and saw white smoke pouring from the doorframe of my own house that I realized what was going on—sort of. Even then, I assumed it was an electrical fire. I ran into the house, fully intending to shut down the circuit breakers and see if the fire was something a household extinguisher could handle. It wasn’t until I saw the pot on the stove billowing smoke that I remembered it. FYI, extremely scorched kidney beans smell worse than a porta-potty. And no, the irony of a drug saving my life and almost killing me in the same week is definitely not lost in my fogginess.

The Five Ws of an Athlete with Fibromyalgia

Who

I’m a lifelong athlete, and a former college soccer and softball player. I’m a current participant in as many activities as fibromyalgia will allow. My favorites are running, biking, swimming, and going to the gym, although I’d love to be able to play soccer again one day.

What

Fibromyalgia has forever changed my life. As my rheumatologist said, “fibromyalgia won’t kill you, but it’ll make you wish you were dead.” Yep. I’m not sure if there will ever be a proven link between fibromyalgia and susceptibility to injury, but I know this: fibromyalgia can turn even the minutest injury into an agonizing ordeal.

When

I first started having symptoms at age 25 but wasn’t diagnosed until age 33. I suffered through years of fatigue, sleeplessness, injuries, and rashes. Each time I was hurt or sick, doctors treated the individual problem rather than the whole picture—until I met a life-saving rheumatologist.

Why

My rheumatologist thinks a combination of extreme stress and a badly timed foot injury may have brought on my fibromyalgia, or perhaps the pain from my three herniated cervical discs ushered in fibromyalgia. None of us may ever know why we have it, but it’s here, and it sucks.

Where

I live in the south, which is a good thing, because fibromyalgia makes me super sensitive to the cold. Some of my fingers go numb and turn paper-white even with our mild southern winters.