Goodbye, Lyrica

Lyrica is not the drug for me. I gave it a few months, and after some ups and downs, the bad outweighed the good. I only got to 150 milligrams per day, partly because my rheumatologist is conservative, and partly because I was reticent to take Lyrica in the first place.

Titrating down wasn’t fun, but it wasn’t the worst thing ever. I went through a week where I alternately felt like Lyrica made me wide awake and obsessive or knocked me out. The last two weeks, I’ve been down to one 50mg Lyrica per night, and every time I took it, I started feeling increasingly more like I was losing my mind. And it was that scary kind of mind loss—like the stories you read about where people are going crazy, but they’re still sane enough to know it.

Two nights ago was my last time taking Lyrica because of the unbearable psychological distress combined with a complete lack of effectiveness at relieving my fibromyalgia symptoms. I felt like I’d need a massive dose of Lyrica for it to be effective, but I also felt like I’d lose my mind entirely if I took the necessary dose. My memory had gone to hell, I’m certain my IQ had dropped significantly, and I felt like an addict. But the going crazy thing is what tipped me over.

Insomnia has plagued me for years. Sometimes my body (in whole or part) hurts too much for me to get comfortable in bed. Other times, my mind races and I can’t stop thinking about the herniated discs in my neck. Then I get so mad about not sleeping that the frustration keeps me awake. I was very worried about returning to completely sleepless nights post-Lyrica.

I bought sublingual melatonin at the health food store in hopes of sleeping somewhat normally. It tastes like orange-flavored cough syrup, but it helps some. I’m only trying 1.5 mg per night for now, but they had 10 mg pills. The first night off Lyrica and on melatonin, I didn’t feel crazy at all, and I even slept for 6 hours. The next night, I got less sleep, but I still didn’t feel crazy. And I’m gradually losing the tough case of the stupids that I’d gotten while on Lyrica.

Exercise-wise, my first day off Lyrica started with an hour-long run. My second Lyrica-free day included a 35-minute bike ride in a thunderstorm (fun, really), 15 minutes of modified Crossfit, and 20 minutes of low-intensity weightlifting. My neck has been sore constantly for several days, and my left hip and knee are tender, but nothing’s majorly flared at the moment. The harder I exercise, the better I sleep, no matter what hurts.

I’m continuing with a vegan diet, and am soon going to add yoga to my exercise repertoire because I’m ridiculously inflexible and unable to relax. I’m weening off caffeine, and one of these days I hope to give up tortilla chips and rice crackers.

I’m so tired of being on drugs. Even when they’re legally prescribed, pills make me feel beholden unto a toxic substance, which in turn makes me feel even less in control of my life. Fibromyalgia has already stolen so many of my choices, and drug addiction—albeit legal—is something I’m trying to avoid. And at this point, I think I’ve tried almost every drug anyway, and none of them work for longer than a few weeks. I’m so, so tired of prescription drugs and their side effects.  After years of trying everything else, “vegan exercise fanatic and melatonin user” doesn’t sound so bad.

Fibromyalgia and Sleep

Sleeping is vital to life. It promotes recovery, which is something athletes need especially after hard training days. For athletes with fibromyalgia, sleeping can be less of a restful experience and more of a nightmare.

I experienced the nightmare for almost three years before starting Lyrica. Various medications and supplements would help a little, but for the most part, each night was a painful battle to sleep as little as two hours. Physical pain and anxiety are a deadly, sleep-robbing cocktail.

I tried everything within reason, and a few things outside of reason. Natural cures. Iridology. Acupuncture. Valium. Fancy pillows, cheap pillows, cervical pillows, no pillow. We paid a fortune for a memory foam mattress. The mattress put me into the 4-hours-per-night range, but nighttime still brought extreme anxiety. It’s really crappy when all you want to do is go to sleep, but your body won’t let it happen.

Lyrica allows me to sleep, and is especially effective if I’ve had a very long, hard workout during the day. I still have to plan every single aspect of a night’s rest, from pillow position to clothing (tags or screen prints irritate my overly sensitive skin and even cause muscle spasms) to the should-I-or-shouldn’t-I-take-ibuprofen-question. I can’t travel much, and I desperately need to be on a memory foam mattress. My cervical pillow goes with me everywhere if I have a chance in hell of sleeping.

There’s nothing quite like the deep depression and hopelessness that comes from not sleeping. Fibromyalgia has taken me to depths I never thought I could reach. Sleeping again has made those depths much more bearable.

Athletes need sleep. We blissfully destroy our bodies with strenuous repetitive motions, maxed-out weights, and ambitious endurance training. If we don’t sleep, we die. As an athlete with fibromyalgia, I was dying. Now, I’m sleeping—even if it is a ridiculously planned and choreographed event. It’s entirely life-changing to say “goodnight” as an actual pre-sleep ritual. Goodnight.

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.