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Traveling with Chronic Medical Conditions

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.

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Fibromyalgia YouTube Channel

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!

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Running Again, with Hives

40 minute run
I walked for 15 minutes and ran for 40 minutes!

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.

hives
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.

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Life with Chronic Pain

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.

 

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Custom Bicycle for Painless Cycling

bike handlebar extender
Tall handlebars and a parrot horn. Yes!

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.

extended handlebars
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.

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Cupping for Pain Relief

cupping bruise
It’s like a circular hickey on my calf.

Try to imagine giant leeches sucking your legs for five minutes, and you’ll get the general idea of what goes on during cupping. I tried cupping to help increase circulation and aid healing in my damaged leg muscles, and for a week I sported round bruises on my calves and thighs.

I’m always up for trying a new way to relieve chronic pain, even if the treatment leaves me looking like I was attacked by an octopus. My back and hip are still giving me fits, despite having had some recent good results with specialized physical therapy. I guess this is the nature of fibromyalgia—a few steps forward and at least one step backward.

The actual cupping experience was a lot more painful than I imagined it would be, but after a minute, the pain eased up a bit. I stayed still on a treatment table for five minutes while the cups did their magic, and by the final minute, my legs were still uncomfortable, but not nearly as bad as the first minute.

When the PT opened his case and showed me rows of cups and an apparatus to make them suction to my legs, I knew I was in for a unique experience. I didn’t get the results I’d hoped for—mainly reduced pain—but at least I tried. I’ve heard that some people swear by cupping, but it’s not for me. My favorite healing tool is a lot more soothing—soaking in the hot tub.

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Foundation Training

foundation training
DVD cover image of Foundation Training (pic from Amazon).

I recently read Foundation Training: Redefine Your Core, Conquer Back Pain, and Move with Confidence, and started the basic exercises the next day. While my back pain didn’t magically disappear (of course), I feel stronger and more confident already. I’ve only been doing the exercises for a few days and started a little more conservatively than the book recommends. My body tends to react poorly to new exercises if I start them too intensely.

I enjoyed the philosophy of the book enough to do something I almost never do—order fitness DVDs. The Foundation DVDs have updated exercises and arrived in my mailbox today. I’m very excited to watch them this evening. I don’t see how strengthening the lower back, gaining flexibility, and keeping good posture can do anything but great things for the unwell body.

Fibromyalgia, chronic pain, low back pain, etc. all tend to push western medicine practitioners toward prescribing pills and/or surgery. I don’t want any of those drastic measures. I appreciate an approach that involves self-motivation and control, which is what Foundation training allows. I can do these exercises and give them a shot rather than wallowing in the bottom of a pill bottle. Giving a sense of empowerment to chronic pain patients is priceless.

I highly recommend checking out Foundation Training. It might not be right for you, but it’s worth at least investigating it as an option. Let me know how it goes!

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Five Tips to Stay Active with Chronic Pain

fibromyalgia workout
Chronic pain sucks.

Chronic pain can keep even the most dedicated exercisers from their daily workout. Over the past year, the pain in my back and right hip was so debilitating that I couldn’t get comfortable anywhere. I gave up running (but recently made a comeback!) and weightlifting on top of everything else I’ve given up to fibromyalgia and dystonia over the years. But almost every day, I made a point to get myself out of the house to walk, with the exception of a few days when muscles spasms kept me locked in a fetal ball in the bedroom. My trial and error workouts through fifteen months of low back/hip pain helped me come up with some advice for people who also deal with chronic pain but still want to exercise.

Get Outside

Unless weather-prohibitive, getting outside is often the first step to activity. Chronic pain is depressing and disheartening and can feel like it steals your soul. Stepping or wheeling outside to feel fresh air and hear bird sing is instantly uplifting. Once you’re outside, you’re more likely to at least walk/wheel around the block.

Find Something That Works For You

Maybe you’re a lifelong athlete like me, and “exercise” means soccer, running, or other high-intensity sports. Recognizing that your body no longer cooperates with your mind’s desires is no easy pill to swallow. Find something that works for you. Swimming and water aerobics are usually great workouts for people with chronic pain issues because there’s little impact on the body. While it doesn’t carry the same adrenaline rush of running fast down a hill, walking around your neighborhood can be mentally cleansing and physically uplifting. Just because you can’t do what you used to do doesn’t mean there isn’t something out there that will work for you.

Mind Your Medications

I’ve experienced medication side effects that were worse than the original problem I suffered. Even medications that you might have taken for years can suddenly start reacting differently in your body. Take a few days to list all the medications you take, the time(s) of day you take them, and how they effect your mind and body. You might find that something either doesn’t work for you at all anymore and you need to call your doctor, or that a certain prescription makes you feel exhausted. Once you’re more aware of what you’re taking and what it’s doing to you, it can be easier to decide on a time of day that’s best for activity.

If At First You Don’t Succeed…

Keep trying. Chronic pain is a nasty demon, but some days you might be capable of things that other days just won’t work. I’ve started running again despite feeling for a year that I’d never be able to run a step. I stuck to a strict stretching routine every night, and eventually the flexibility gained in my legs helped me return to running about 20 minutes every other day. That’s nothing compared to the 2+ hours per day I used to run, but it’s empowering to be back in action. I was afraid to hurt myself and took my return very slowly and carefully and definitely got bad results the first few times I tried. But, eventually, I ran for 5 minutes and felt pretty good, then used that short run as a steppingstone.

Stretch

Flexibility is so important for everybody, but especially for chronic pain patients. Range of motion in joints can be severely limited by tight muscles, and the less you move around, the tighter those muscles become. Many medical conditions contribute to severe muscle spasms (I have cervical dystonia) that can’t be undone, but for the most part, at least some area of your body is probably accessible to stretch. I found that even on my worst days, stretching my hamstrings helped relieve low back pain. You don’t have to do anything drastic—just gentle stretching will help. A physical therapist can be a great resource to set you on a safe path to a more flexible body.

Good luck to you! Chronic pain is awful, but reclaiming your life and moving your body can do worlds of good.

Of course, like all things health-related, ask your healthcare professional before undertaking anything out of the ordinary. Everybody’s medical conditions are different and should be respected as such. Exercise is great medicine, but make sure you get cleared to participate first!

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Creative Visualization

fibromyalgia creative visualization
Think it, then do it.

Has anyone tried creative visualization? As best as I understand it, focusing on something that you want is supposed to help make it happen. It’s a lot like envisioning how you want your life to be, focusing on that vision, and making it happen.

My visualization of my life has always included sports and outdoor activities. Fibromyalgia has tried very hard to take that vision away. Lately, in part thanks to awesome words from a reader (thanks Stephanie AC), I’m trying creative visualization for the first time. Rather than just imagining something and feeling defeated because it can’t happen, I’m going to imagine it as an attainable reality.

My (hopefully) attainable reality is returning to running. I don’t even have to close my eyes to imagine what it will be like to return to the freedom of moving quickly on my own two feet. Earlier today I drove over the bayou bridge near my house and could almost feel what it would be like to run across that bridge like I did for years. I imagined the salty smell, the hard wind, and the sound of seagulls. I imagined the childlike joy of running so fast down the hill before the bridge that it would feel like flying.

I’m shifting those visions that I’ve always had into energy toward reality rather than disappointment. We’re having almost spring-like weather in northwest Florida right now, and I would love—no, I WILL love to go outside and run in the sun.

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Reclaiming Life at What Price?

running with fibromyalgia
It was raining, but it was a great day to run.

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?