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Ten Things I Did Before Fibromyalgia

10. I played soccer—a lot of soccer. It didn’t even seem like a big deal when I’d take off my cleats after a game and find a bloody sock. Pain was temporary before fibromyalgia.

9. I ran around mountains, up mountains, and once down a mountain.

8. I tried new sports, like rollerblading, just for fun. There was no fear of the repercussions of taking a stiff, broken body through a new routine.

7. I took ibuprofen for pain and it actually worked.

6. I sat in a chair and read books for hours without my back hurting.

5. I ate ice cream and brownies and cookies and knew nothing about total-body inflammation.

4. I planned my days around choices rather than obligations—choices like when to go to the gym rather than obligations like having to see the chiropractor just so I can stand to be alive.

3. I travelled, and didn’t have to plan trips around muscle spasms and pain. I carried fun stuff in my luggage rather than needing a carload of pain-relieving props (Back Buddy, camping mattress in case the hotel bed is too soft, cervical pillow, Tiger Balm, etc.).

2. I went to sleep like a normal person. No handfuls of herbal supplements, no piles of pillows to ease back pain, no special cervical pillow. I would just lie down and pull up the covers.

1. I was free without realizing it—free to live as boldly as I wished and without pain—free to explore, to take risks, and to relax.

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Lightning and a Return to Running

The wet evidence of my storm-plagued return to running. Honestly, it was kind of fun.
The wet evidence of my storm-plagued return to running. Honestly, it was kind of fun.

Remember the song Maybe God is Tryin’ to Tell You Somethin’ from The Color Purple? I made my return to running today after an almost two-month break because of my hip. I’d been jogging along for about forty-five seconds when the sky broke open. I’d been looking forward to trying to run for so long and have had so many setbacks over the years, and I’m not very good at giving up. So I kept going, even when the flashes of lightning and blasts of thunder got closer together, which I’ve read means they’re getting closer to me.

At minute 13, lightning came down with a massive, simultaneous thunder clap. It was more like an explosion than thunder and lightning. I jumped into the middle of the road (not the best solution) and hollered. The hairs on my arms and neck felt like cactus spines, and my teeth felt like they were buzzing. “God is tryin’ to tell you somethin’” got stuck on repeat in my head. I changed course for home.

I made it 17 minutes before deciding not to overdo it with my comeback. My rain-soaked clothes are airing out on the porch, and my hip is throbbing, but it was throbbing before I left for my run. Considering I got caught in one of our famous Florida summer thunderstorms, ran longer than I expected, and didn’t end up a scorched piece of meat, I’m pretty happy. If no one can help me with my pain and spasms, I might as well live and die how I choose. These days, I feel like I can survive anything (until I can’t).

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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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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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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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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.

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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! 🙂

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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.

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Sacroiliac Dysfunction and Exhaustion

I ran 10 miles on Sunday and felt like a million bucks. I drank sips of sugary tea every 20 minutes and was able to maintain a pace of 8:40 per mile for all 10 miles, which is pretty fast for me at that distance. I was on top of the world that night and felt motivated and energized for more.

The next morning was a different story. My right sacroiliac joint felt off, and my back was stiff and extremely sore. My walking gait was awkward, and sitting was very uncomfortable. I went to my boss/chiropractor/friend for an adjustment, and he confirmed the problem in my right SI joint. He had to use a lot of force to get a proper adjustment, but the relief was immediate. However, so was the fatigue.

I barely managed 15 minutes on the elliptical that evening, and today, I’m totally wiped out. My back is holding its position, which is great, but I feel like I’ve been run over by a bus. The actual SI joint is majorly inflamed and has palpable swelling, and when the alarm went off for my 6:30 a.m. run, I opted to stay in bed with an ice pack instead. Work was pretty torturous the rest of the day, and I laid down as soon as I got home.

We all know that fibromyalgia causes fatigue. My questions are these—has anybody else experienced SI joint dysfunction along with fibromyalgia? If so, has extreme fatigue come along with it? Have any other fibromyalgia patients had massively increased fatigue after chiropractic adjustments? Thanks for your input! I’m going back to bed with an ice pack.

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Raynaud’s After Running

raynaud's
White, cold, and numb. Yuck.

I ran six miles in 58-degree weather, and even though it was sunny and beautiful outside and I never felt too cold, my hands told a different story. Raynaud’s Phenomenon sometimes turns just one or two of my fingers white and makes them go numb, but this particular run provoked several pasty appendages. I know there’ve been suspected links between fibromyalgia and Raynaud’s, but I wish there were more information for patients. I don’t want to take medications or have surgery or do anything else drastic, but I would definitely like for my fingers to stop going numb when it’s not even extremely cold outside.