Sep 20

Food, Pain, and Guilt

“The psychology of guilt and illness—consuming sugar increases inflammation, but constant denial doesn’t feel good, either.” I wrote that note to myself during my lunch break at work last week. I’d been craving a Milky Way bar for three weeks without giving in to temptation. As the forth week loomed, I caved and bought the last Milky Way in the vending machine (which I took as a sign from the food gods, that it was there just for me).

I never eat sugar except the kind that naturally occurs in whole foods. I love sweet foods, but because of fibromyalgia, quite some time ago I committed to avoiding processed sugar. Why would I contribute to added pain and inflammation in my body? That’s a healthy, responsible mindset, but sometimes the guilt that comes with it is daunting.

It’s hard to watch my friends and family eat ice cream, cake, and brownies like it’s no big deal. I don’t begrudge them, but I’m jealous. My hardline thinking about food keeps me as healthy as possible in the face of chronic pain, but it can also imprison me with guilt. If I choose to live by normal social standards and have occasional birthday cake, I immediately feel at fault for the pain in my body.

My reasoning broke down on Thursday. Three weeks of wanting a Milky Way—and I have no idea why I specifically wanted that candy bar—and my back was killing me whether I ate one or not. I realized that my fit, healthy friends indulge quite often and don’t notice adverse side effects, and that it’s unreasonable for me to live in American society and completely forgo all culinary treats.

With way too much on my mind, I took the walk of shame to the vending machine. As I pushed my quarters into the coin slot, I remembered riding my bike to Tom Thumb as a kid and gorging on candy and soda. It was normal life then to eat candy, and I want a normal life again.

The Milky Way was better than I’d imagined. A coworker convinced me to avoid looking at the list of ingredients and just enjoy it. Every bite was delicious, and I wished it were king size.

Every time guilt crept up—I’m eating candy and my back hurts, therefore it’s my fault that my back hurts—I reminded myself that my back was hurting way before the Milky Way fantasy even crossed my mind. Enjoying occasional unhealthy snacks should not bring such guilt, and I know that. But it’s a daily struggle to not feel responsible for the pain, like if I had just eaten a head of broccoli instead of a candy bar, I’d feel better.

But in truth, I’ve lived in complete abstinence from sugar, and while it’s helped me overall, it wasn’t a cure. Just like sugar abstinence isn’t a cure, occasional sugar indulgence isn’t a cause of chronic pain. But I still feel guilty, and I won’t touch sugar again for a very long time.

Sep 12

Product Review: Topricin

TopricinI’m always in the market for any pain reliever that’s homeopathic. The local co-op recently had Topricin on sale, and I bought a 0.75oz tube to give it a try.

I’ve seen pretty bold claims on homeopathic products, and I’m often skeptical. (However, I love Crystal Star Natural Muscle Relaxers and good-quality magnesium supplements). When I first squirted the Topricin on my finger, I was even more unsure of its claim of pain relief. But my back was killing me, so I gave it a try.

For starters, it’s either odorless or has such a slight smell that I can’t detect it. I’m accustomed to all topical pain-relieving products having at least some kind of odor, including my beloved (and quite fragrant) Tiger Balm. But the Topricin literally smelled like nothing.

I rubbed it over my sore vertebrae (thanks, fibromyalgia) and waited for any sort of tingling or other sign that it was working. Nothing. But then I went to sleep, and that’s a rare thing when I’m in pain. I woke up at 3 a.m. to pee and realized my back was much better. Topricin or coincidence?

I tried it thrice more and now I love this odorless product. I’ve sometimes combined it with Tiger Balm for extra relief, although I have no idea if that’s smart or not. I’ve only used Topricin on my painful back and hip, but it says it’s patented for neuropathy and specifically mentions fibromyalgia, plus a host of other conditions.

Nothing is a cure for chronic pain, but Topricin helps, and sometimes that’s the best we can do. Plus, it’s not as full of extremely sketchy ingredients like some prescriptions, and it doesn’t cost much to try a small tube.

Good luck in your pain relief journey, and let me know about your favorite topical products.

As with all things health-related, ask your healthcare provider before trying anything new.

Aug 01

The “Unavailable” Specialist

I’ve been waiting on an appointment with a specialist for months, and the week was finally almost here. I hate going to doctors’ offices, and I hate planning my life around appointments. Mostly, I hate not being well. But the reality of not being well means spending a significant amount of time at the mercy of doctors and their scheduling staff. I called to confirm my appointment a week in advance because I’m driving five hours and spending the night in a hotel to see the specialist. The receptionist casually informed me that the doctor would be “unavailable” that day.

Unavailable? I asked her why I hadn’t been notified, and why I had to be the one to confirm the appointment, only to find out it was cancelled. She didn’t give me a decent answer, but said the doctor could see me the following week. I explained that I was coming from out of town, that the hotel was reserved, and I’d already made arrangements with my boss. I might as well have been talking to a toadstool.

I told the receptionist that I’d need to check my calendar and see if I could work something out to change all of my plans and come the following week. She said that was fine, and that the office would be open until 5 p.m. I called back within a few minutes to say yes to the later appointment, and was informed that it’d been given to someone else, and the next available appointment was in mid October. My thought: “Oc-fucking-tober???” My words: “but you guys were the ones who cancelled my appointment—without even telling me—and now I have to wait MONTHS to reschedule it?”

After an absolutely useless and maddening conversation with the receptionist, I asked for her manager. She said the manager was in a meeting, which felt dishonest at best. I asked her if the manager would call me back today, and she said yes. Of course, no one called me.

I understand that life happens. Things come up, and maybe the doctor had to schedule some sort of life-saving surgery for somebody. Or maybe he got a deal on an island vacation. I don’t really care. What I care about is the complete shit for customer service and the lack of decent resolution. At this point, I don’t even have another appointment scheduled because the manager must be on major overtime, as this would be the sixth hour of the meeting she was supposedly running.

It’s inexcusable when people are sick or hurt and doctors and staff act like it’s no big deal to mess around with the schedule and drag out the wait for months. We patients have so little power already. We’re in pain, we’re miserable, we’re frustrated. To have an appointment cancelled is bad enough, but to be made to wait so long after already waiting months is inexcusable. Unfortunately, there’s nothing we can do. If we need a specialist, as I do, there’s nowhere else to go. I have no words for the level of frustration and anger and disgust I feel, and perhaps the worst part is, no one in the doctor’s office seems to care a bit about how their decisions impact patients’ lives.

Jul 25

Supplements

Four Natural Muscle Relaxers and a cal-mag-zinc.

Four Natural Muscle Relaxers and a cal-mag-zinc.

What supplements, if any, do you use to improve your health or alleviate symptoms? I’ve experimented with lots of them, and switched brands fairly often. Currently, I take a lot of magnesium to help with muscle spasms caused by dystonia. I also take fish oil, melatonin, and cal-mag-zinc at night. I don’t take a multivitamin because my diet is so clean that I don’t feel like I need one.

For fibromyalgia and/or dystonia flare-ups, I keep Crystal Star Natural Muscle Relaxers on hand. They don’t work wonders, but they also don’t make me turn into a useless zombie like prescription pills do. I tried Curcumin but got no relief, so now I just include a decent amount of turmeric in my diet (just in case it works over time), which is essentially what’s in Curcumin.

I can’t underscore how much I hate prescription drugs. Even though it’s often impossible to live without them, I’ve been so beaten down by side effects in the past that it now takes a very, very bad day to make me turn to prescriptions.

Jul 22

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).

Jul 20

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.

 

 

Jul 16

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.

Jul 10

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!

Jul 01

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?

Jun 10

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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