I recently became an “Expert” with SheKnows Media. I’m grateful for the opportunity to not only get more of my work in front of readers, but also for the chance to make chronic pain patients more visible.
My first Expert piece is a lighthearted gift guide for athletes. I compiled a list of gifts in various price ranges and made sure to throw in a pain relief section, since I’ve never met an athlete who doesn’t have at least a few aches and pains. In the future, I hope to not only speak to regular athletes, but also to those who suffer from chronic pain and conditions like fibromyalgia. Here’s the link to the post: Gift Guide for Athletes on SheKnows
I don’t worry about my activity level—it’s always high when I’m well enough to exercise—but I’m a sucker for data. I have an awesome, old Garmin Forerunner for tracking runs, and my iPod Nano can track runs with its built-in Nike+ app, but I wanted something more basic that I could wear all the time. I’m interested in knowing how active I am throughout the day, not just during exercise. My mom has a Fitbit Flex and likes it a lot, so when I saw a decent sale I got one for myself. I chose bright pink because it was $10 cheaper than the other colors.
The smaller sized wristband clipped at midway leaves me lots of breathing room.
When my Fitbit Flex box arrived, I found a small black tracker, two sizes of pink bands, a tiny wireless dongle, and a small USB charger inside the package. I have a prepaid iPhone 4 and can’t use much data, so I opted out of the Fitbit phone app and instead chose Fitbit’s MacBook-compatible program. The interface is user-friendly and easily customizable, and I checked it out while my new Fitbit charged.
From what I can tell, the Fitbit Flex works like a basic pedometer by detecting movement and translating that movement into an estimate of how many steps the wearer takes throughout the day. You can calculate your stride length and input your numbers for better accuracy, and add which arm you wear the tracker on to avoid dominant-hand movements counting as steps. From Fitbit’s website: “Changing this setting to “Dominant” will decrease the sensitivity of step counting and should reduce any over counting of steps when your body is not moving. The “Non Dominant” setting will increase the sensitivity of step counting, and we recommend this setting if your Flex is not counting enough steps.”
The sleep-tracking feature on the Flex intrigued me, since chronic pain often leaves me sleepless. My back pain has majorly decreased lately, which means I’m sleeping a lot more, but I still don’t sleep as well as I should. I hoped the Flex would help me analyze how often I stir around and disturb my sleep, but it didn’t work out for me. The first night that I put my tracker into sleep mode, I obsessed so much on having something around my wrist that I couldn’t go to sleep. Even without neuroses (yes, I can be a bit obsessive to say the least), the sleep tracking feature isn’t particularly sophisticated and can be prone to flaws, but I still wish it would’ve worked for me. It’s possible to lie still while wide awake and have the tracker register that you’re sleeping soundly, but when I’m in pain I don’t lie still, so that wouldn’t have been a problem for me.
If any of the Fitbit features are something I don’t want to use, I can easily remove them from my dashboard so I don’t have to look at them daily. I took off the sleep box to avoid reminders that I didn’t track my sleep. Another one I removed was the weight information and food tracking. I don’t have any desire to track my calories. The water-tracking feature can be helpful, though, especially since I’m prone to dehydration. It’s a serious concern for athletes in Florida.
My major gripe about the Flex so far is its sensitivity. It’s supposed to be compatible with an active lifestyle, but I’ve found that a lot of my daily movements put it into sleep mode. Sleep mode activates when you tap rapidly on the tracker for a few seconds. For me, it also activates when I mow the grass (vibration from the mower, I guess), pat the dog’s belly, or ride over bumpy terrain on my bicycle. I’m an old drummer and still have a habit of drumming my hands on the counter or my thighs, and that, too, sends the Flex into sleep mode. Not cool.
I saw a Black Friday sale that would’ve made it a lot cheaper than what I paid (even though I got mine on sale), and of course that was aggravating. I have concerns about the durability of the bands, and the expense of name-brand replacement bands is ridiculous. The bright pink has already gotten a bit dull after a couple of weeks, so I ordered a few off-brand (read: way cheaper) replacement bands, but I don’t appreciate having to do that. Can you imagine if we had to buy new watchbands every month? Fitbit needs to work on durability for sure.
I’ve worn the Flex while running several times, and it’s been fine. The tracker and band are lightweight and comfortable. Sweat sometimes collects inside the band, so I always take out the tracker after a run and make sure it’s dry. The Flex is water-resistant but not waterproof, which is annoying, but so far I haven’t had problems with sweat or shower water ruining it.
Despite some drawbacks, I like the Flex. It’s a great reminder if I’m working on the computer to get up and move around instead of melting into my chair. My mom and I are “friends” on Fitbit’s online program, and we can see each other’s step counts and cheer each other on if so inclined. I upped my goal to 15,000 steps per day from the stock 10,000, and I’ve found it pretty easy to reach 15,000, but the tracking software allows me to see my most active hours of the day rather than just displaying my number of steps. Which reminds me—it’s time to conclude this review and do my lower back a favor and go for a walk.
Nutshell Review
Pros: lightweight; choice of colors; easy and user-friendly online tracking program; comes with two sizes of bands; creates a good reminder to get up and move around throughout the day.
Cons: too sensitive—can go into sleep mode accidentally; bands aren’t durable and color doesn’t stay fresh; replacement bands are expensive; can be hard to snap onto wrist.
Some of y’all asked what I’m eating these days. I thought it’d be easier to show some pictures with captions rather than making a boring list. I’m a true believer in fighting chronic pain and fibromyalgia with whole foods as the primary weapon. I stay away from processed food and almost never eat refined sugar. I don’t adhere to one specific diet but instead choose foods that make me feel good rather than those that make me sick. I almost never go out to eat, but when I do, I’m finicky about which restaurants and what I order. In general, I stay away from wheat, dairy, added sugar, and processed meat.
I like hardboiled eggs and raw veggies for lunch.A few nights ago I baked chicken, a Korean sweet potato, carrots, and green beans for dinner.During a rare visit to a restaurant, I ordered stir-fried chicken breast with Chinese broccoli. It was delicious!
I do a core workout almost every day to fight chronic pain.
Keeping my core muscles strong has been a lifesaver. Not only am I able to run again, but I’ve started sleeping again because I’m not in as much pain when I lie down. My low back and pelvis and hips were in so much pain for more than a year that I was terrified it would become a lifetime issue.
I already deal with chronic pain and felt like I couldn’t stand a new addition to my pain resume’. The core exercises help my pelvis stay in proper alignment, which relieves the once-constant pain in my back and hips. The picture of my notebook shows what a daily core workout looks like for me. I change things up each day but always do the basics.
I’m about to travel to Boston soon, and I’m super excited. I love Boston and will get to spend time with a much-loved friend from college days. However, chronic conditions threaten to put a kink in my travel plans, and I’ve been running around town and spending lots of time on the internet trying to make my travels as smooth as possible.
One of my concerns, secondary to my chronic neck and back pain, is psoriasis. I’ve been dealing with an outbreak of guttate psoriasis for almost two months now, and it’s tedious to say the least. It’s currently under control on my limbs, but my torso is covered in angry red patches. My insurance company—this makes me so freakin’ furious I almost can’t see straight—is attempting to deny coverage for the topical medication my doctor prescribed to rid me of the psoriasis outbreak, so I’m walking around itchy and feeling gross. The medicine would be $800+ if I paid out of pocket, and not only can I not afford that, but I absolutely refuse to pay out of pocket for something insurance should cover. We pay more than $1,000 per month for the married couple’s policy, yet it doesn’t cover the one prescription medication I’ve needed in a long time.
I’m trying to deal with the psoriasis without prescriptions and so far haven’t gotten good results at all. Gluten-free, dairy-free, sugar-free diet—yes. Scent-free hypoallergenic bath soap—yes. While a restrictive, healthy diet and organic soap likely help my overall health, the psoriasis persists. I’m very lucky that it’s only guttate and not a more serious form, but it still sucks. I don’t want to compound the discomfort of travel by itching like hell, but it looks like I may not have a choice.
What really worries me about travel is my insomnia and chronic pain. I still can’t sit on a soft surface, despite experience massive improvement in pelvic stability since dedicating myself to a challenging core workout routine. I’ve even returned to running—a huge, happy milestone—but sitting on a soft surface (like a plane seat) is almost impossible. Something about cushioned seating makes my pelvis shift, which causes instant misery. I plan to stand as much as possible and kneel in my seat if I have too. I’m a small person, so hopefully I can do what I need to do without bothering my fellow travelers. If not, I guess I’ll probably end up inspiring someone’s bitchy Facebook post about a squirming seatmate. Sorry in advance.
I always worry about an impending attack of cervical dystonia, and change is my enemy as far as muscle spasms are concerned. I’m going to try to fit my cervical pillow into my suitcase so at least I’ll have a familiar place to rest my head and neck at night. Flying up the coast and sleeping in an unfamiliar bed worry me, but I refuse to let my sketchy health rule my life.
I bought some homeopathic zinc lozenges today and will use Counter Attack supplements to try to help my body through the germs it’ll encounter in airports and new cities. I also bought some hypoallergenic cleansing wipes and will make sure to scrub my phone with wipes, too. I’m not paranoid, just realistic, and I imagine anyone with chronic pain and/or chronic disease can relate.
I started a YouTube channel the other day, and I haven’t felt so un-technically savvy in a very long time. The upload was simple, but the rest was not. I’ve only posted one video so far but have big plans to put a lot of fibromyalgia-related stuff on YouTube in the future.
My first fibromyalgia video is about the hives, rash, or whatever is on my skin. I’ve had skin problems for many years– about the same amount of time I’ve had fibromyalgia, although the fibromyalgia wasn’t diagnosed until a couple of years ago. The new dermatologist I go to says the rash is guttate psoriasis, which is blessedly less severe than plaque psoriasis. My first YouTube video shows an outbreak on my torso.
I’d love for you to submit your ideas for a fibromyalgia YouTube channel. Ask and I’ll try to make sure you receive!
Lots of organic beans, veggies, and barley for very little money.
I work multiple jobs, none of which provide benefits of any kind—no insurance, no paid days off, no freebies. Other than health insurance, groceries can be my largest bill if I’m not careful. I’m a major believer in health food and clean eating, and over the years I’ve figured out what works best for my body. I stay away from gluten, processed foods, and added sugar. I’ve done Whole30 (a month-long challenge to go very strict paleo), been vegan, and been vegetarian. After all is said and done, I realized I function best on a mixture of the three. That may sound crazy—mixing paleo and vegan—but some of the basics are the same. Only whole foods. No crap. Vegan is a lot easier on a budget than paleo, and the extra carbs in vegan meals help fuel my long runs and hikes. Here’s how I eat clean, healthy foods on a very small budget:
Bulk bins are your friend. I got a hearty, organic soup mix full of barley and beans for only a couple bucks. If the same soup mix had been pre-packaged, I’d have paid a lot more. I added my own seasonings and the result was fantastic.
Communicate. Get to know the produce person in your market, and talk with the store manager. Ask them to split a head of cabbage if it’s priced by the pound, then only buy half since that’s all most people can use anyway. Find out what days certain foods are most likely to be discounted. I’ve saved a ton this way. My local co-op often has half-price produce on Sundays, and I get lots of organic mushrooms and salad greens for cheap.
Check for matching grants. Some local farmers’ markets get grants that double food stamp dollars. That means every EBT dollar buys $2 worth of food at a matching farmers’ market. You can eat clean, local food without blowing your entire month’s benefit on one shopping trip.
Don’t ignore frozen food. Frozen broccoli is some of the nastiest food I’ve ever put in my mouth, but other frozen veggies and fruits are delicious. I can usually buy frozen, organic strawberries for way less money than their fresh counterparts.
Use salad bars for meat. Organic salad bars often have cooked chicken breast as a salad topping. Organic meat is super expensive, but if you add some on top of a salad at a pay-by-the-pound bar, you can come out with a great meal for just a few bucks. I once calculated that I got a huge salad with lots of fancy toppings like red bell peppers and chicken breast for less money that I would’ve spent on one organic bell pepper. No kidding.
I have some great news! I’m able to run again. I’ve actually been running for a couple of weeks, but I waited to share until I was sure I was going to be able to return to running consistently. I took a picture of my watch this morning to help me document my celebration. That’s 40 minutes of running! This is a huge victory for me. I already feel my sanity returning and my thoughts clearing.
In other news, I’m battling hives again. Do any other fibromyalgia patients get unexplained skin issues? I’ve had two punch biopsies (ouch!) over the years. One dermatologist said the hives are an allergic reaction. To what, he didn’t know. The other dermatologist said I have guttate psoriasis. I tend to disbelieve both of them. Either way, my hives itch. They’re currently on my trunk, elbows, wrists, left breast, and right knee pit. Luckily they’re not nearly as bad as they have been in the past, although I wish they’d go away. It’s so much easier to deal with the hives since I’m running again. There’s something about running that makes me feel like I can take on anything.
My torso is covered in patches of small, itchy hives.
I’m not sure what my next running goals are. I’m hesitant to make any new goals since I’m still just grateful to be able to get out there and run. The core exercises that I do every day have made a huge difference in my life. I’m convinced that increasing my core strength and stability has helped stabilize my SI joints. The spinal support offered by strong muscles is fantastic. And the proof is in my return to running. Planks suck, but they work. I have to be very careful with my movements to keep my back pain-free, but I’m running again, so I feel pretty damn good.
Sleep is a sticking point for a body in chronic pain. It’s what I crave the most—to just lie down and close my eyes and not wake up for hours—but it’s often a craving left unsatisfied. Most mornings begin one of three ways.
I wake up as the dogs rattle around in the kitchen, sniffing for errant kibble under their blankets and bowls. I take stock of the situation—is it really morning? How much sleep was I able to get? What muscles are spasming? Am I able to turn my head or is it stuck in one direction or the other? I’m stiff, sore, and need to get out of bed quickly before I can’t get up at all, but I’m thankful to have gotten a few hours of sleep.
Or, I wake up at 3 a.m., my hips throbbing, an electric-like pain shooting across my pelvis. My neck is stiff, my leg muscles are rigid, and nerves light up throughout my body. I stand up in the dark because I can’t stand the pressure on my body as I lie on the bed.
And there are the mornings that are merely extensions of the previous night. Those are the hardest, the ones where no matter how many times I change positions or alternate between the bed and a camping mattress on the floor, I can’t get comfortable. I’m exhausted but in too much pain to sleep. Midnight, two a.m., sunrise, all come and go. Eventually I get up, defeated by my own body, and try to start another day.
I used to take sleep for granted. In college, I’d fall asleep on a cheap blow-up mattress and wake up feeling like a million bucks. Before chronic pain, if I said I didn’t get enough sleep, I meant that I’d had four or five hours of rest. Now, those hours are days. My record is ninety-six hours without sleep, and by the time I finally took enough muscle relaxers to knock myself out, I was shaky and cold and thought I might die.
I hate prescription medication. I use vitamin B supplements, sublingual melatonin, and organic tea to try to sleep. But occasionally, on nights when nothing else works, I reach for a bottle of pills. It’s one of the worst kind of defeats—to admit that my body is attacking itself, trying to stay awake through the hours meant for sleep.
I try to look at chronic pain as a test, a puzzle that must be worked with through trial and error until my body and I come up with a livable solution. I exercise daily, often spending an hour working on my core muscles to help alleviate the pressure on my spine. I eat a restricted diet, avoiding sugar and corn and gluten and a lot of other things that seem to inflame my body. I have a pretty good survival system, but chronic pain is a fulltime job. Every bite of food, every push of a heavy door, every reach overhead to pull on a fan—every single thing has to be carefully planned, because a wrong move can leave me debilitated for days or weeks.
Sometimes, when I’m able to sleep, I drift off to lucid dreams in which I’m running half marathons again, or scoring goals on the soccer field, or finishing my first triathlon. They’re beautiful dreams, but because they’re lucid, I know there’s a certain sense of falsehood in them. Willpower and hope keep me fighting through the sleepless nights. I may not be able to run again yet, but I want to, and desire is a powerful thing. I get mad sometimes—a resentful, ugly mad—but I try to channel that anger into healing. Chronic pain owns the mind as much as it owns the body, and staying hopeful that one day I’ll be okay is my way of telling it to kiss my pain-free ass.
I sold my road bike several years ago and bought a grandma cruiser. Cervical dystonia and three herniated discs made it impossible for me to comfortably get into an aerodynamic cycling position, but I didn’t want to give up biking after already sacrificing so much to chronic pain. The cruiser I bought is a hybrid bike with plenty of gear choices, and I added some skull stickers to make me feel better about riding a dorky bike. I love it, but until recently, the positioning was still off.
My neck gets very angry if I have any weight come through my left arm for an extended period of time, and the factory setup of the cruiser had me leaning forward too much. I raised the handlebars and lowered the seat as much as safely possible, but still no dice. The local bike shop fixed me up with a custom handlebar extender, and now I’m a much happier cyclist.
Look how high the handlebars are in relation to the seat.
The extension piece itself is simple—a metal tube that allows the bike’s handlebars to sit up taller than they normally could. Unfortunately, the installation wasn’t so simple. All of the cables on the front of the bike were too short to accommodate the taller handlebars, so the bike technician had to put in all new cables. The labor took about an hour, but when the tech was done, I finally had a bike I could ride comfortably.
Exercising with fibromyalgia and chronic pain takes a bit of creativity, but if you’re committed, there’s usually an answer to most problems. I now sit so upright on my bike that it’s probably comical for people who see me pedal by, but I don’t care. I can ride without neck pain, and that’s worth the dork factor.
