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.
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.
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.
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.
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.
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.
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.
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!”
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.
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.
