Posted on

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.

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

Whole30, Day 1

whole30
Salmon with roasted sweet potatoes and Brussels sprouts.

Day one of Whole30 hasn’t been too bad. I’ll break it down for you.

Current fibromyalgia symptoms: both hips ache, and muscles in right buttock are in spasm just enough to provoke pain down my leg, presumably from the sciatic nerve. Left-sided neck and upper trapezius feel sore and tight. A bit of fatigue, possibly from not sleeping well due to hip pain last night.

Today’s exercise: two-hour walk around the neighborhood. Nothing major, just strolling and enjoying the weather.

Breakfast: 2 organic chicken eggs scrambled with sautéed kale and onions, plus 3 strawberries. I had a slight stomach ache after breakfast, which never happened when I was vegan, but it wasn’t too bad.

Lunch: 90% lean beef (organic, pastured) cooked in organic coconut oil with diced onions and a tomato, served atop a heaping bed of romaine lettuce and topped with a little plain yellow mustard. Sort of like a hamburger without the bun, ketchup, or mayonnaise. I also ate 8 baby carrots.

Snack: After walking for a couple of hours, I had 4 big spoonsful of organic almond butter (fresh from the co-op churn—no sugar or salt added) and 4 organic strawberries.

Dinner: Wild-caught salmon cooked in a little olive oil with oven-roasted sweet potatoes and Brussels sprouts. YUM. I only wish I’d remembered to buy fresh dill for the salmon.

General Feelings So Far: It sounds crazy to already have a lot of thoughts about Whole30 since it’s only the first day, but my mind is very much on my eating habits. First, I’m still morally uneasy about consuming meat, and only take some comfort in knowing my food was raised and slaughtered by farmers using as humane practices as possible. The grease of the ground beef, even though it was 90% lean, was a little gross, although the beef tasted great. I’m just not used to grease since I’ve been vegan for months. I’m very glad that Whole30 doesn’t allow dairy. Cheese and milk would be too much to stomach at this point, and I truly believe that some of my fibromyalgia symptoms improved once I gave up dairy and became vegan.

The cravings are insane. I’m not much of a sugar-eater, or at least not in the cupcakes-brownies-cookies sense, but obviously my body is used to refined carbohydrates. Throughout today, I’ve found myself craving banana nut bread, refried pinto beans, sweet cornbread, and pecan waffles. Wow. The “sugar dragon” mentioned in the Whole30 book, It Starts with Food, is no joke.

I also found that I didn’t buy enough food at the grocery store. I’ll have to stop at the co-op again tomorrow for more fresh veggies and meat. One more observation—it’s not easy dealing with special occasions and staying true to Whole30. There’s always a friend’s birthday or a holiday on the horizon, and with those special days come pizza, cake, and alcohol. I’m pretty sure my first test is coming within a week, but since I’m hoping to slay the God-forsaken beast that is fibromyalgia, I’ll stick to my guns and eat my own food, no matter what the occasion. But I might still dream about buttermilk biscuits.

Posted on

Relieve Fibro Symtoms Whole30?

I’ve decided to try the Whole30 diet for a month starting tomorrow. I’ve been vegan for several months now and have noticed improvement in my fibromyalgia symptoms, but there’s still too much pain in my body. I’m going to keep a fairly detailed log of the Whole30 experience in case any of you are interested in trying it, and also so I can chronicle the ups and downs of transitioning to zero processed foods.

For anybody who hasn’t read about Whole30, check out their website. The basic premise is to eat no sugar or sugar substitutes, eat no dairy or grains or legumes, and drink no alcohol. Essentially, balance your plate with a big pile of vegetables and a palm-sized protein source— in other words, eat real food, not crap.

Since I already don’t consume dairy as a vegan, that part won’t be hard. I’m also a minimal drinker, so the lack of alcohol isn’t a big deal (although I’ll miss my occasional beer). I already cook with olive oil and coconut oil and enjoy fresh vegetables, so I’m on board there. What will be challenging for me is the meat consumption and the lack of potato chips.

I love potato chips. They’re a serious vice. I get the slightly healthier kind—organic and seasoned with only salt and pepper—but I can’t have a single chip on Whole30. That one’s going to be rough.

I’m sure the meat and eggs will taste good, but I have major ethical and moral hang-ups about consuming animals. There’s a local farm that uses the most humane slaughtering methods possible, and I vow to only buy from them. But still. Killing is killing, and I’m struggling with this one. I’m certain I’ll predominantly be eating wild-caught fish rather than beef, pork, and chicken. None of it warms my heart, but at least the salmon got to swim freely and enjoy life before landing on my plate.

Tomorrow’s the big day. I’m very much hoping for a major reduction in inflammation, and thereby a major reduction in muscle spasms and pain. My right hip has been keeping me up (I set a new personal sleepless record—84 hours awake), so something’s got to give.

Breakfast will likely be a scramble of eggs, kale, and onions cooked in olive oil. Lunch and dinner, I’m not sure. I shopped for all kinds of fresh organic ingredients at the co-op today, and it was weird to be buying meat again after being vegan. But with the hope that Whole30 can knock down fibromyalgia, I’m going all-out with it tomorrow.  You’re not supposed to weigh yourself during Whole30, but I’m going to because I’m already on the low end of healthy and need to make sure I don’t get skeletal. I’ll let you know how it goes.

Posted on

Runner’s World

Raining and running along the bayou.
Raining and running along the bayou.

I’ve been a longtime believer in exercise as a means of keeping sanity. I’m vegan. I prefer to live without prescription drugs whenever possible. If you’ve been reading this blog, you know these things already.

Some of you have asked to know more about Fibro Athlete, so here’s your answer. I’m in the online edition of Runner’s World. Check it out if you’re interested, and keep running, friends! 🙂

Posted on

Physical Therapist and Chiropractor to the Rescue

I sometimes undervalue the effectiveness of physical therapy and chiropractic work. In my latest bout with back and hip pain, I was reminded of something that I ironically tell my patients and friends regularly: non-invasive treatment can be the best kind of medicine.

After my sacroiliac joint pain progressed into gluteal spasms and a rotated pelvis, sitting became impossible. I stood for as many hours of the day as I could, and laid prone with a pillow under my hips for the remaining hours. I couldn’t sleep because of the pain, and I finally had a “duh” moment. I work at a spinal rehab clinic. My bosses are a top-shelf physical therapist and an awesome chiropractor. Time to ask for help from the best.

I’m sometimes too passive in asking for help because fibromyalgia makes me feel like I need help way too often. But when I couldn’t sit or sleep, it was time for intervention. My boss /physical therapist put me through a thorough evaluation, and I started treatment two days later. It can be a little strange to be a patient in my own clinic, but the tradeoff is knowing that I’m getting great treatment. The decrease in my pain, progress in flexibility and mobility, and renewed ability to sit (and sleep) are testaments to how well chiropractic care and physical therapy can work together to heal even chronic pain suffers.

I’ve been to two PT/chiro sessions this week, and am currently able to sit pain-free on the floor. I had no idea how important sitting is until I couldn’t do it for a few days. I ran 6 ½ miles on Monday and was able to concentrate on the blue sky over the beach rather than the pain in my back and hip. Tuesday, I could do light weightlifting at the gym and actually sit down for dinner rather than standing through meals. Today, I ran 5 miles, walked the dogs, and was able to sit for 15 minutes in the hot tub without feeling like my sacrum was about to stab through my skin.

Forgive the pun, but fibromyalgia is a pain in the ass. I think the best way to sum up fibromyalgia to people who don’t understand it is to say this: it’s not just a cluster of random and sometimes unexplained painful symptoms (although there are definitely those). Normal injuries happen, but the aftermath is abnormal. The consequences from a healthy runner falling on a trail run are usually some bruises and scrapes. The consequences from a fibromyalgia-suffering runner falling on a trail turn into weeks of muscle spasms, misaligned bones, and exhaustion. It’s like fibromyalgia makes a worst-case scenario out of every situation.

The longer I live and the longer I fight chronic health problems, the less faith I have in pills and surgery. While those things are good options for some people, I prefer to stay as minimally invasive and drug-free as possible. Luckily, I have access to extremely competent and like-minded health practitioners who can stretch, massage, and manipulate my body into a good enough place to keep me out of the pill bottles and out from under the knife. I’ll never again underestimate the power of a physical therapist and a chiropractor—or the convenience and comfort of sitting.