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What the Hell is Dystonia?

“What the hell is dystonia?” I’ve heard that question enough times to get rich if I were paid to answer it. In a not-very-scientific nutshell, here’s my definition.

Dystonia is a condition that causes intractable muscle spasms that result in pain, limited range of motion, and often bizarre postures. Those spasms and postures and pain make it hard to do anything normally. I have cervical dystonia, which means my neck muscles are very tight—sometimes so tight that I can’t do anything but lie flat on my back and yell curse words.

Dystonia can be in different parts of the body, and I’m afraid mine has spread to my right hip. Some days I can’t walk normally, although that’s usually remedied by forcing myself to walk until my gait straightens out, which sometimes takes an hour or more. A few weeks ago, I had debilitating calf spasms in both legs, and I had to crawl to get to the bathroom. I upped my magnesium dose and have thankfully had no more calf problems, although I stretch them obsessively. I’m headed to yet another specialist five hours from home in August.

Sitting is one of the worst things I try to do. I stand whenever possible, often through meals and all day at work. I also have to be very careful with my head and neck. I sold my road bike a couple of years ago in favor of a “grandma” hybrid, because the aero bar position was impossible with cervical dystonia. Now I can ride my bike as long as my hip allows me to sit, or as long as my legs can handle standing while pedaling.

Some people have such severe dystonia that they are stuck twisted sideways, or an arm or leg (or both) are flexed abnormally and locked in a way that looks impossible. I’m one of the lucky ones, although it doesn’t feel like it sometimes, which brings me to my final non-scientific definition of dystonia: it is an unpredictable, life-changing bastard that can make you a prisoner in your own body.

My rather cynical definition aside, I refuse to let dystonia lock me in bed. When I wake up and am slow and stiff, I either go straight to the gym and get on the elliptical (the weird movement of that machine loosens my joints) or walk around the neighborhood. Exercise doesn’t help the pain very much, but it definitely increases my mobility. It’s also a huge psychological victory to be able to still do something I want to do even when my body doesn’t want to cooperate. There are some days when I can’t do much of anything besides feel like a leech, taking up space and resources, but I can almost always force my body into walking.

I recently found the Dystonia Medical Research Foundation, and it’s a pretty awesome organization. Check out their website if you want more information. I’ve been sitting too long, and I have to go for a walk now.

 

 

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Paraphernalia for the Fibro Sufferer

It looks medieval (if you ignore the blue plastic), but it's actually a great took for working out trigger points in muscles.
It looks medieval (if you ignore the blue plastic), but it’s actually a great tool for working out trigger points in muscles.

What images do you have to describe fibromyalgia? When I look around my house, I see signs of it everywhere. Three bottles of Crystal Star Natural Muscle Relaxers are on my kitchen counter. Two jars of Tiger Balm are on my nightstand and a Back Buddy is on the couch. A cervical pillow is on my bed. My fridge is full of GT’s Kombucha and organic vegetables, and the bathroom looks like an infirmary supply closet.

I took a few pictures of some of the various symptom-relieving paraphernalia around the house and will compile a comprehensive list later this week. Do you have anything you swear by to get through bad days? Nothing in my arsenal is a cure, but each piece has helped at some point.

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Comfortable Shoes: Brooks Ghost 7

I’ve always been bothered by the bones that stick out on the outsides of my forefeet, but I didn’t know until recently that I have what’s technically called “tailor’s bunions.” What that means for me is trouble finding comfortable shoes. Wide shoes are too wide throughout, and regular shoes put pressure on the tailor’s bunions and make my feet hurt. I’ve even gone so far as to use a scalpel to excise a bothersome piece of rubber from a pair of running shoes to allow my bones to spread out instead of feel bound in pain.

brooks ghost 7
Brand new and blue!

I’ve been a big fan of Altra shoes lately, although they’re still not wide enough for me in the tailor’s bunion area. They have soft, stretchy mesh in the forefoot though, which allows my feet to push out to their required width. Since my muscle spasms have been so bad in my right hip, I haven’t been able to run in two months. I’ve been walking a lot, and Altras don’t do it for me as walking shoes. Their zero-drop platforms work well with my running style, but I’m a slow, heel-toe walker and prefer traditional running shoes for walking.

I spent an hour this morning trying on shoes from Asics and Brooks, and finally stumbled upon the Brooks Ghost 7. I hate buying the latest model of anything because it’s always marked up so much, but the Ghost 7 is superior to everything else I tried. The toe box isn’t nearly as rounded and wide as a pair of Altras, but the area near my tailor’s bunions doesn’t have a bunch of stiff overlays, so my feet can push the mesh out and relax. Sold!

Normally I wear a size 8.5, but I opted for a 9 in the Ghost. My feet are probably bigger than usual since it’s July in Florida and I’ve been walking a lot, and the 9 felt just right. I can’t wait to start putting some miles on my new shoes. They feel surprisingly light for traditional (not minimalist) running shoes, and I’ve read that they weight around 9 ounces. The heel offset is 11mm, but I don’t feel awkward in them like some shoes with big offsets. I really like that the heel collar is well-padded and covered in what feels like non-abrasive fabric. The color—“blue/eclipse/lime”—is not something I would design in a perfect world, but it’s not hideous. There are other color options, but my local running store only carries blue.

As far as the outsole goes, I’m glad to see full-length rubber. I don’t like the trend of leaving rubber off the soles in order to save weight and provide flexibility. If I’m wearing shoes, I want them to last a long time. If I want to feel the ground more, I’ll take off my shoes. I also like the Ghost’s lack of plastic plating on the sole. The hard, smooth plastic that connects the heel to the forefoot on some shoes is dangerous. I’ve slipped on the edge of a curb and slid along a fence because of that plastic. The Ghost looks like it uses a pretty thick dose of rubber on the outsole, so I hope this pair lasts for many hundreds of miles. I’ll update this post or write a new one after I’ve put a bit of distance on my new pair of Brooks Ghost 7!

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Kombucha and Probiotics

gt kombucha
Gingerade flavor is the best I’ve tried.

Has anybody tried probiotics to help with the myriad symptoms of fibromyalgia? I’ve been enjoying ½ a bottle of GT’s Kombucha every night for a while now, and I’m feeling a bit better in general. I definitely swear by the magnesium supplements that I started taking a few weeks ago, and I’m pretty sure the combination of kombucha and magnesium is a good one.

Flavor-wise, I’m definitely a huge fan of Gingerade. It’s delicious. I tried Original and thought it tasted like watered-down apple cider vinegar. Stawberry Serenity was good but a little too sweet-tasting, and Gingerberry just made me wish I’d bought Gingerade. But seriously… this stuff is raw and organic, theoretically good for us, and tastes great. Any kombucha users out there?

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Dystonia Nightmare

I’m worried that my dystonia is spreading. I’ve only been diagnosed with cervical dystonia, but the muscle spasms in my back and right hip have gotten worse in recent months (despite a few breaks). And in the last two weeks, I’ve woken up multiple times with my calf muscles knotted into agonizing bundles.

I’m still diligently taking magnesium supplements, which curiously seem to have helped relieve some of my neck spasms but haven’t touched my lower body. I bought another variety today—Bluebonnet Magnesium Citrate—and hope that if I up the dose and take different types, I’ll stop having so many spasms.

That said, I’m no fool. I know that the increased fasciculations, cramps, and full-blown spasms are a serious issue. I found a movement disorders clinic at a big city hospital five hours from me, and I’m headed there in August for a workup. I don’t know if fibromyalgia or dystonia came first, but at the moment, the dystonia is the scariest thing I’ve faced after years of mysterious symptoms. To not know if I’ll be able to walk normally (or at all) from one minute to the next is a unique kind of torture.

I haven’t run in 9 days because last Sunday when I ran, I felt great in the morning, but later locked into an all-night battle with spasms through my torso, hips, and legs. Dystonia, like fibromyalgia, is often poorly understood, and I’m just hanging in there the best I can. Slow walks and time on the elliptical seem to help me stay mobile and sane, but I feel like my body is getting away from me. I’ll keep y’all updated on how this plays out, and if you have suggestions, please let me know.

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Magnesium for Muscle Spasms

I didn't really know the difference in brands beyond the labels, but I chose to buy the magnesium from the co-op so at least there was some form of quality control.
I didn’t really know the difference in brands beyond the labels, but I chose to buy the magnesium from the co-op so at least there was some form of quality control.

I’m still feeling stronger in general from cutting out every bit of processed food, but I’ve been having really bad trouble with muscle spasms again. My neck, back, and hips are so tight that I can’t move normally. The orthopedist dry-needled my hip and back last week and shot steroids (which I HATE) into my hip. The chiropractor gave me a couple of a major back and pelvis adjustments earlier this week, and the massage therapist tried to work through my concrete-like muscles. Two nights ago, I had one of the scariest episodes of muscle spasms ever.

I went to bed with my usual grouping of pillows—cervical pillow under my head and neck, memory foam pillow under my knees, thin synthetic pillow under my ankles and feet—and thought I might be able to sleep with minimal back and neck pain. That part was true, but around 4 a.m. I awoke to what felt like someone tearing my left calf muscles off the bone.

Normal calf cramps are something I’m quite familiar with, and this episode was nothing like the post-workout, dehydration-induced cramps of the past. The pain was so intense that I was yelling, and I’m usually pretty controlled since I’m used to fibromyalgia. No amount of squeezing the muscle and trying to stretch it was working, and I was terrified that something was happening to my body that could not be undone. My neck’s been spasming for 3 ½ years. My back’s been bad since October 2013. And now my lower leg?

The excruciating pain finally subsided and the muscle unwound a bit after two of us nearly squeezed it to death. I couldn’t straighten my knee or dorsiflex my ankle, and I had to crawl to the bathroom. Every time I tried to do anything but keep the leg bent and guarded, the spasm would start again. I’ve never experienced pain like that—not even when I was kicked in the face and broke my nose and cracked my jaw. I knew I wouldn’t die from a leg spasm, but it was the kind of pain that makes me wish it would kill me swiftly.

Fibromyalgia is a cruel game of trial and error. I’ve got the diet thing down pretty well, although there’s always room for tinkering with specific foods. I thought I was getting plenty of nutrition since I eat only fresh meats and vegetables and fruits, but now I’m considering magnesium deficiency as a possible spasm cause (or contributing factor).

Has anybody else tried magnesium supplements? As soon as I was able to get out of the house, I carefully loaded myself into my SUV and drove to the local co-op for organic bananas (potassium) and magnesium supplements. I noticed a decline in muscular tightness within two hours of taking the first magnesium pill. I’m hoping that a buildup of magnesium will finally stop the recurrent spasming in my body.

I’d love to hear from anybody with magnesium supplement experience. As always, y’all can private message me on Facebook or leave a comment here.

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Less Pain, More Life

I had the awesome experience of living like a normal, fibromyalgia-free person over the weekend. Two friends and I went overnight backpacking on The Florida Trail, and I’d been a nervous wreck before the trip. In my younger, healthier days, I’d have packed my old backpack full of necessities and luxuries without a lot of thought to total pack weight. Sure, the lighter the better, but there wouldn’t have been scales involved. For this trip, because of the toll fibromyalgia has taken on my body over the years, I used both a luggage scale and a kitchen scale to drop every last unnecessary ounce from my pack weight.

Less pain means more time outdoors.
Less pain means more time outdoors.

While it seems ludicrous to weigh shirts and record their ounces in a notebook, I persisted. I popped off every removable item on my backpack until it was pared down to little more than a giant stuff sack with a hipbelt and shoulder straps. I chose calorically dense, lightweight foods like dried coconut and Chomps grassfed beef jerky. (Yes, I’m still adhering to Whole30 and getting great results.)

The payoff was an overnight trip that exceeded my expectations. The section of the Florida Trail that we hiked was flooded by the recent massive storm that hit this area, and some of the trail was underwater up to my thighs. The hiking was at times hot, hard, and challenging, and despite carrying 16 pounds in my backpack, I had an almost otherworldly awesome time.

Maybe it was the diet—Whole30 is powerful medicine. Maybe it was my determination—I haven’t given up from pain when many times it seemed like the best option. Maybe it was the friendship— support is a great thing. Realistically, it was probably all three. Without clean eating habits, strong willpower, and love, I’d probably have been home in bed or dead.

When I think about my incredible weekend hike, it’s hard to imagine that at times I’m in misery, homebound and unable to stand my own body. We walked roughly 16 miles, maybe a few more—a feat that would be challenging to somebody who doesn’t have fibromyalgia. Before the trip, I was terrified that I’d end up in so much pain that I couldn’t complete the hike, and worst of all, become a burden on my friends. The confidence I got from an almost pain-free experience in the wilderness is unlike anything I’ve ever experienced. Fibromyalgia so often tells us we can’t, but this weekend, I told my body yes, we can.

Going vegan was a great decision that began to improve my painful fibromyalgia symptoms, but it wasn’t quite the right fit. A clean diet isn’t a cure-all. But for me, changing my eating habits to follow Whole30 principals and paying closer attention to how food effects my body has been better than any prescription drug.

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Week 1 of Fighting Fibromyalgia with Whole30

Dinner was chicken with homemade pest, raw carrots, and raw cabbage. All organic ingredients.
Dinner was chicken with homemade pesto, raw carrots, and raw cabbage. All organic ingredients.

Day seven of Whole30 has been the best day yet. My carb flu is receding, and the debilitating hip pain that had me yelling and crying on the floor two nights ago is almost gone. Today is also the first day I’ve almost caved to an unapproved item—wine. I have a hard time relaxing because so many things hurt, and while I’ve been a light drinker for years, I found myself really wanting a glass of white wine tonight. I even went so far as to smell some freshly poured wine. But I abstained, and I’m glad I haven’t blurred the lines of the program.

Today’s exercise: 45 minute run; 15 minute walk; 15 minute self-massage and stretching routine.

Breakfast: Almond butter and half an apple before workout, then 2 scrambled eggs and coconut water after workout.

Lunch: Grill time—hamburger over lettuce, tomato, and cilantro with sweet potato and onion.

Snack: Nothing today, probably because I ate a big lunch.

Dinner: Baked chicken with homemade pesto and raw cabbage and carrots, finished with a frozen banana and frozen blueberries blended with almond butter.

General Feelings So Far: Like the designers of Whole30 say, it’s not hard to follow their plan. Living with fibromyalgia is hard. Eating healthy food can be frustrating, inconvenient, and time-consuming, but it isn’t hard.

I don’t have any new aches and pains, just a few standard ones, but I’m starting to feel better overall. I was even able to fasten my backpacking pack today and walk around the yard for a little while without intense pain, and I was able to sit through both lunch and dinner without having to stand mid-meal to relieve hip pain. When I woke up this morning, I couldn’t move my head at all because of neck spasms. I laid in bed and gently pushed my head from side to side with my hands, then progressed to turning it (supported on the mattress) slowly without my hands. After a few minutes of that routine I could turn further and was able to get up. A small victory, but a victory nonetheless. My hopes are still high that Whole30 will help me beat fibromyalgia.

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The Hidden Danger of Corn

I learned a great lesson in what not to eat today. Was fibromyalgia causing my persistent dental pain? Did I have my first-ever cavity? NO! I went to the dentist rather urgently this afternoon, only to find that my teeth are fine, but a popcorn hull was lodged deep within my gums. Embarrassing (I really should floss more thoroughly) and awesome (no cavities!).

Now that I’m doing Whole30, corn of any kind is forbidden, which means the offending hull is from roughly a week ago. Wow. If that’s not inspiration to clean up your diet, then by all means, head for the corn trough, but I’m sticking with Whole30.

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Whole30, Day 3

Current fibromyalgia symptoms: Right buttock/ low back/ hip pain still hanging on. Stiff neck but better than two days ago. Major brain fog—possibly related to switching to Whole30 from vegan. Tired but not exhausted, and worried I won’t sleep again.

Today’s exercise: 20 minute run; 30 minute walk; 30 minute light weightlifting and stretching routine.

Breakfast: 1 egg; 1 apple

Lunch: Ground beef cooked with onion and tomato; sautéed broccoli; and raw carrots

Snack: Smoothie made with canned coconut milk, ½ frozen banana, ¼ cup frozen blueberries, 2 tablespoon almond butter, and ½ scoop Garden of Life Perfect Food. Between lunch and dinner, I had four small sheets of Sea Snax seaweed.

Dinner: Ground beef sautéed with onion, green pepper, and jalapeno pepper served atop 6 big leaves of buttercrunch lettuce; Wholly Guacamole; and ½ roasted sweet potato.

General Feelings So Far: This is the most radical diet change I’ve ever made so quickly, and I definitely feel weird—like I’m living on a level somewhat removed from reality. Perhaps this is the “carb flu” spoken of in It Starts with Food.

I’m still not morally on board with eating animals, and that’s going to always bother me no matter how this diet change goes. I think it’s definitely a good idea to look for health benefits by cutting out wheat, corn, and processed food. But I’m still unsure about the rest of it.

I didn’t sleep last night and got out of bed at 3:45 a.m. to eat several spoonsful of almond butter. I found out the hard way that it’s easy to accidentally consume too few calories on Whole30. I remedied that today with more sweet potato and avocado, plus a coconut milkshake. I definitely don’t feel like I’ll be hoofing it to the kitchen in the middle of the night tonight. I’m not one to wish life away, but I’m definitely eager to see how I feel in a few days. The second week is supposed to be when more of the positive feelings (and less carb flu) happens.