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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.

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Vegan Update

The quick verdict thus far: a vegan diet is helping my fibromyalgia symptoms recede!

At the 2 ½ weeks mark, I’ve had a reduction in arm pain, muscle spasms, and generalized neck pain. I haven’t had any new rashes or random injuries, either, and I’ve been able to sleep fairly normally most nights.

breakfast bowl
Fruit and nuts = breakfast.

Breakfast has been one of the most challenging vegan meals, because I love scrambled eggs. I’ve found a good alternative, even though it’s not even remotely similar to eggs—a bowl of strawberries, pecans, and slivered almonds.

My favorite homemade vegan dinner so far is Indian-style vegetable korma with saffron rice. I used coconut milk as the base for the korma, then added plenty of curry powder, fenugreek, and garam masala. Sweet potatoes, kale, English peas, and cashews were delicious in the seasoned coconut milk.

Simple, vegetable-based sautéed dinners have helped me avoid what some vegans have warned is the “you’re always in the kitchen” trap. Cutting up sweet potatoes, onions, yellow squash, and zucchini and making a quick batch of egg-free cornbread doesn’t take any extra time beyond preparing a meat-based dinner at home.

I’m realizing more and more how dependent I was on dairy. I miss cheese like an old friend, but the loss is getting easier to deal with as time passes. Fibromyalgia really, really sucks. Dealing with it can be very hard, but having struggled for so many years with pain, the food-based sacrifices to become vegan probably seem a lot less challenging then they would if life had been easier the past few years. I’m going to keep going on this vegan train, and will continue to post updates for those interested in using diet to control their fibromyalgia.

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Product Review: CryoDerm

As a longtime athlete and fibromyalgia sufferer, I’ve tried almost everything imaginable to relieve the joint and muscle pain that I experience on a regular basis. I even once had a woman rub “dragon’s blood” on my neck. It was red liquid in a bottle with Vietnamese writing on the label. It didn’t work, but it had an interesting smell.

cryoderm
4oz bottle of CryoDerm liquid gel.

CryoDerm is a topical pain-relief product that comes in several varieties, including roll-on, spray, and gel. My chiropractor has used the spray on my back and neck a few times, and I have a bottle of the gel at home. As of this posting, a 16 ounce bottle is around $33 online.

The active ingredient in CryoDerm is listed as Menthol USP 10%, which is common with many topical, non-prescription pain relievers. Other ingredients that catch my eye are arnica, boswella (although most sources site “boswellia”), eucalyptus oil, and peppermint oil. All of those, as far as my research goes, are plant-based. There is a handful other ingredients, so read the label if you have sensitivity issues.

I’ve used CryoDerm for muscle spasms, herniated disc pain, aching knees, and tendonitis in my wrists and elbows. It’s a bit liquidy, and I’ve had the gel drip down my body before I could rub it in. CryoDerm definitely smells like a medicinal preparation, but I like its sinus-clearing properties. It takes about two minutes for me to notice any effects, but then there’s a nice tingling that gives way to a deeper, soothing feeling.

CryoDerm is no miracle drug, but it does a good job of calming acutely aggravated parts of my body. My right wrist was hurting too much to type this morning, but since using CryoDerm on my elbow, forearm, and wrist, I’m able to type again. It’s also calmed my neck spasms enough to allow me to concentrate on work.

The label says not to apply CryoDerm more than four times per day, but in my experience, it only lasts ½ hour – 45 minutes, depending on the severity of pain in any given area of my body.

I definitely recommend trying CryoDerm if you’re already a fan of topical pain relief treatments. It’s not as greasy as IcyHot and doesn’t tend to ball up like BioFreeze. And, their website claims “no animal testing,” so yay for simple kindness.

Disclaimer: Consult your healthcare provider before trying anything new.

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Fibromyalgia and Rashes

I’ve had a lot of people ask about the rashes I sometimes reference on this site.  I’m including an old picture from when said rash was pretty gruesome.

fibromyalgia rash
This is a view of my side, between hip and breast-level.

I never had skin trouble until everything else started going downhill with my body. For me, rashes are a nasty consequence of fibromyalgia. These pictures are from my first major rash several years ago. The one currently on my hip is much less evil, but definitely a nuisance. Clobex lotion is the only thing that makes the rashes disappear, but I hate using it. It makes my skin feel hot and thin and fragile, and it’s extremely expensive.

I’ve had the rashes biopsied twice, and the first biopsy showed a non-specific “reaction” (definitely one of those times when I wondered why I bothered to give over my flesh and money), and the other result came back “guttate psoriasis.” The psoriasis diagnosis sort of makes sense, except that sometimes my rashes appear at specific times—like within 12 hours if I take valium (so I obviously don’t take it anymore). But again, I never had anything like psoriasis before I started having other fibromyalgia symptoms, so for me, they’re inextricably linked.

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Vegan, Day 3

Newby vegan pitfall—tortilla chips. Yes, they’re unhealthy and fattening, but they’re also vegan, and they taste great with guacamole, which is also vegan. I gained two pounds from water retention overnight!

I didn’t sleep much last night. I couldn’t get comfortable, despite an impressive selection of memory foam and cervical support pillows. My right arm, both knees, both hips, neck, and thoracic muscles were unhappy. I can tell there’s a facet joint locked in the upper thoracic area, and I’ve been resetting it by rolling on a ball (not fun, BTW), but I couldn’t get it to stay unlocked last night.

This morning, I mustered a decent 48-minute run through a couple of local parks. I had trouble looking for cars, because I couldn’t turn my head or upper back enough to see behind me. Most of the other aches improved during the run, but the back and neck did not. And, as I thought about my newly minted veganism, I majorly craved a baloney and mayonnaise sandwich.

For the record, I think baloney is gross. But there’s something about “can’t” that makes me want all kinds of non-vegan fare. I don’t feel any different yet (and I don’t expect to), although the random cravings are odd. When I got back from my run, I had a big bowl of Mesa Sunrise cereal with fresh strawberries, peaches, and unsweetened almond milk. So far, it’s easy to eat a vegan diet, but the cravings are definitely wild.

On a more serious note, I understand that fibromyalgia is closely tied to inflammation in the body. Refined sugar, dairy, and heavily processed foods have been reported to cause or increase inflammation. It seems like a no-brainer that going vegan could help or even cure fibromyalgia. Personal results remain to be seen, but I’m hopeful.

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Vegan, Day One

Desperation—muscle spasms, joint aches, a persistent rash on my left hip—has led me to my latest attempt to cure fibromyalgia. The last reasonable solution I haven’t attempted is veganism, and as of today, I’m giving it a chance.

I was a vegetarian for much of high school and college, although not a particularly healthy one. My meal choices centered around cheese pizza, tater tots, soda, and ice cream. Not eating meat isn’t a huge leap for me, but veganism is. I’ve been on a mostly organic-based diet for years, but that includes organic cheese, free-range meat, and even organic ice cream. I cut out refined sugar for five months and saw minimal results, but I’m hoping that going with a strict vegan diet will finally kick fibromyalgia out of my life.

This morning, I had our local co-op’s version of energy bars for breakfast. They’re fig-based squares with cocoa powder, goji berries, sunflower seeds, and sesame seeds. I’ve eaten them for years before a long run, so this day so far hasn’t been much of a foray into veganism. I have a feeling that it won’t be for three or four days that I really notice how closely I have to watch my food choices to stick to the vegan way of life.

Pain can make a person crazy. Fibromyalgia combines pain with a special kind of erratic yet constant crazy. If almond milk, fig paste, and Brussels sprouts can fix this hell, then I’ll raise a glass of kombucha to the vegan cure.

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I Hate Rough Seams

Fibromyalgia sucks. So do rough seams.
Fibromyalgia sucks. So do rough seams.

Fibromyalgia and rough seams do not get along. I’ve worn my running socks inside out for years to avoid blisters, which gave me the idea for a solution to the daily fight with shirt and bra seams. Sports bras and wicking t-shirts have some of the most unforgiving seams on the clothing market. When fibromyalgia’s flaring, and my body gets that flu-like don’t-touch-me feeling, the seams dig into my back and shoulders like emery boards.

At the risk of looking stupid, I’ve started wearing most of my workout t-shirts inside out. Seam problem solved. Since I wear sports bras that don’t have individual cups, I’m also able to turn the bras inside out. It’s a whole new world. I can bike, run, and hit the gym without feeling like my clothes are sawing away at my skin.

I get very tired of making adjustments and lifestyle modifications to accommodate fibromyalgia, but I can live with inside-out clothes. If my workout clothes are going to be stinky and sweaty anyway, they might as well look funny, too.

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Running from Pain

Ever tried on pants that were several sizes too small, stretching the seams to the max? This morning, the muscles across my upper back felt like overburdened seams, straining and ripping. I was angry, depressed, cynical, and miserable. I begged my girlfriend to tell me everything would be fine. She couldn’t. So I went for a run.

I made it 61 minutes and 42 seconds in the Florida summer heat. An absolute fury built inside me while I ran. My upper back and neck felt like a feather being pulled apart down the middle, and I could’ve sworn someone stabbed me in the collarbone and left the knife there. The worse the pain, the stronger the fury.

I lucked out today. It’s hard to say that athletes with fibromyalgia luck out with much, but the fury cooking inside me allowed me to wrench loose some of the locked facet joints and muscles spasms. I swung my left arm at an odd angle while I ran, and by the half-hour mark, the tearing sensation gave way to crepitus and popping. And then release, physical and emotional.

Not all days bring such luck. I’ve run many miles where I couldn’t even turn my head to look for cars because muscle spasms locked me in a straight-ahead stare. Sometimes my hips and knees feel like they’re on fire when my bodyweight lands for a footfall. But not today.

I hate fibromyalgia. It may kill me one day, but I’m going to fight every second not only for my life, but for my lifestyle as an athlete.

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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.

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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!”