I’m curious what you do when you want to do something so bad but you know it’s potentially disastrous for your health. Bottom line—with every fiber of my being I want to return to running, but I’m scared to death of the post-run nighttime pain that made me howl like a wounded animal the last time I ran.
When I see people running, I feel a mixture of hope and bitterness and excitement and disappointment and jealousy. I’m happy for them that they get to experience the joy and challenge of running, but I desperately want to return to one of the last things I had to give up. Soccer is unrealistic. Tennis is probably unrealistic, too. Same with rollerblading. But running was my holdout, the final thing I kept for myself for peace, clarity, adventure, and release.
My internal debate gets more heated every day. I’m walking several miles (and sometimes as many as 5 hours) daily, so it seems like running a few minutes in the midst of all that walking wouldn’t be a big deal. But every time I almost embrace freedom and take off, I think about the way my hips and back felt the night after the last time I ran, and I keep walking instead.
Is there anything you’ve given up for fibromyalgia that you’ve reclaimed? If so, did it come with a price, and is the price worth it?
5. Wash your hands frequently and thoroughly. This seems like a no-brainer, but I stayed well through the entire fall season when a lot of people were sick. I think a lot of my wellness had to do with washing my hands with warm water and soap more often than I wanted to—especially after grocery shopping, checking the mail, and at work.
4. Sleep. Having fibromyalgia or any kind of chronic pain can make sleep very difficult, but do what you can to get as many hours as possible. I’ve taken to sleeping on my camping mattress on the floor with my legs on three pillows. I look ridiculous, but my back hurts less and I’m able to rest.
3. Try herbal supplements and teas. I like spirulina and Counter Attack. They taste bad and require a quick swallow and lots of water, but they make me feel energized. I also like Throat Coat tea. Of course, make sure your healthcare provider clears you to take supplements before you try them.
2. Exercise outdoors. Even if I only go for a short walk in the woods, I immediately feel better physically and mentally. The clean air and peacefulness helps me connect to the planet, and the movement helps with my stiff joints. I feel sick in general if I don’t get time outdoors.
1. Avoid processed foods—especially sugar. There are lots of studies that show the negative effects of processed sugar. Yes, it tastes good, but feeling like crap and/or getting very ill isn’t worth the momentary blissful taste. Fresh blueberries will taste super sweet after you get used to abstaining from processed sugar, so go for fruit if you need something sugary. As a side note, I ate some candy and cookies as the new year approached, and caught a very bad cold within a few days. Coincidence? Maybe, but I’d been healthy for 14 months before, and those were 14 processed-sugar-free months.
After ditching Lyrica, I resolved to do whatever I could to stay off prescription drugs. Very rarely, I took one Skelaxin for muscle spasms. The side effects weren’t worth it most of the time, but sometimes I would be so bad off that I had to take one. As the one-year anniversary of my back and hip issues neared, I couldn’t take the daily pain and stiffness anymore. I made an appointment with the doctor who’s worked on my neck in the past. He’s smart, isn’t afraid of the latest medical technology, and perhaps most importantly, he actually spends time with his patients and listens like a human rather than a hurried robot. Unfortunately, those attributes make it very hard to get an appointment, and I waited two months despite being an established patient.
When I did finally see him, he examined my back and hip and told me a few things I already know, like I have tight muscles and joint laxity. He decided to order a lumbar MRI, which wasn’t a surprise. He also talked me into filling a couple of prescriptions because he was very worried about my high pain levels and lack of sleep. I left his office with two scripts I’d never heard of before—Piroxicam and Tizanidine.
I thought I might not fill the drugs, but pain wore me down and I headed to the pharmacy. I figured I could try them once or twice and get off them quickly if they sucked. Piroxicam is an NSAID pain reliever and Tizanidine is a short-acting muscle relaxer. I was given instructions to take the Piroxicam once per day and the Tizanidine up to three times per day. I took one of each the first night, and was asleep within an hour.
Going to sleep quickly is a big deal with a body wracked by chronic pain. Hell, going to sleep at all is monumental. When I woke up the next morning, I didn’t feel hung over at all—I just felt better. I felt genuinely rested, unlike the crappy, forced sleep that comes from some drugs.
For several days, I took one Piroxicam in the evening and one Tizanidine before bed, and I felt great. I hiked 21 miles one weekend, and began to feel hopeful about a mostly pain-free back, neck, and hip. As always, I follow a healthy diet and use my hot tub as much as three times per day. The good food, warm water, and new prescriptions gave me a feeling of freedom from pain, and it was priceless.
That feeling was also short-lived. After almost a week, I noticed my back pain was getting more intense again, and my neck felt badly out of alignment. This seems to be the curse with my fibromyalgia—something new helps for a little while, but before long, I’m back to hurting.
I took a break from my nightly muscle relaxer routine and didn’t notice much of a change. However, I’m now on day two of no Piroxicam, and I feel like crap. I haven’t decided yet if I’m going to start taking it again, but I’m leaning toward yes. I’m scheduled for the MRI this afternoon, and if I get stiff having to lie still for it, I’ll probably come home and pop a Piroxicam.
Have y’all tried either one of these medications? If so, what’s been your experience? I’d love to hear from you.
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.
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.
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.
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.
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.
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.
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 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.
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.