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!
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.
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.
My friend Gloria was diagnosed with stage 4 breast cancer in 2008. She has been through surgery, chemo, and radiation, and continues to endure infusion therapy every twenty-one days to block estrogen from feeding the cancer cells. Right now, cancer lives throughout her skeletal system but is not in any visceral organs. She’s beaten incredible odds to survive well past doctors’ predictions. Unfortunately, her survival comes with a price—chronic pain. Gloria is an adventure-loving, free-spirited person who hopes her experience can help other people who are also fighting cancer.
What were your initial thoughts when you were diagnosed with cancer?
I can’t call it shock because I knew it was cancer when I first felt the lump. But the first time I heard the confirmation of my intuition—“you have breast cancer”—I went into a tunnel. I heard “you’ll need surgery and chemo,” and everything was muffled sounds outside my tunnel. All I could hear clearly were my thoughts: ‘This is it. This is how I will die.’
What would you want friends and family to know about helping a loved one newly diagnosed with cancer?
“I don’t know what to say” is ok. Even silence is fine. I didn’t want to hear anything but “I’m here for your” or “I’m sorry.” Or silence. Not “my aunt had cancer, you’ll be fine, or don’t worry.” I wanted them to just be there.
Do you have advice for new cancer patients to help them take care of themselves emotionally?
Don’t start spending too much time obsessing on the internet. Don’t look up survival rates. Everybody’s different—when you first get diagnosed, you don’t even know what you’re dealing with. You need to process that you’ve been diagnosed with cancer, and that’s it. Things will change. You might get discouraged about something that’s going to change anyway.
Have there been any happy surprises since being diagnosed?
What I call my angel experience. I was going through chemo and had to go to physical therapy to get my right arm moving again. A lady walked up to me and said, “do you have breast cancer?” And I was pissed at her for asking because it was obvious that I was weak and bald. But then she said, “I’m a twenty-year survivor, stage 4, in the bones, thoracic, sternum, cervical, and lumbar. You are going to be alright.” The same shit I have! Then she walked away and disappeared and I never saw her again. That was enough to encourage me. That was a real turning point. I’d started out real positive, but then I started sinking. And then she showed up.
If you meet someone who just found out she has cancer, what would you want her to know about how to handle day-to-day life?
Keep a journal. It’s important to write down how you feel. I think the hardest part is listening to everybody’s bullshit. You have to just not listen to too much and try not to look too far ahead.
What’s one of the best decisions you’ve made since your diagnosis?
To just live in the moment. Not to worry about down the road, because you can’t. Nobody’s going to get out alive. Honestly, not having to go to work anymore helps. I don’t have all that stress. Most days I’m in a lot of pain, and when I worked as a nurse, I couldn’t lie down and rest when I needed to.
What’s your favorite part about survival?
I can spend each day appreciating what I have. I appreciate time. I get up and sit on the porch and listen to the birds. And being with Ruby, my dog, is my life. She’s my baby.
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.
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.
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.
I felt exhausted yesterday after a two-and-a-half-hour workout that included an hour of very challenging physical therapy for my back and hip. Dealing with chronic pain is a fulltime job. Workouts geared toward rehab aren’t hard like a long run, but they’re very fatiguing and difficult in their own way. When I got home, I felt like I needed a nutritional boost ASAP. I raided the fridge and decided to make miso soup with fresh vegetables.
You can use whatever vegetables you have on hand, and if they’re from an Asian market, even better. I wish I’d had shitake mushrooms, but white button did fine. The one thing I wouldn’t compromise on is organic miso. I’ve read scary things about conventional soy products. This is how I made my miso soup:
1 quart water
1 head broccoli
2 medium carrots
2 large mushrooms
2 large pieces of wakame (sea vegetable)
organic white miso to taste
Chop vegetables while water boils in a pot.
Add carrots to boiling water for a minute or two, then add remaining vegetables.
Use a ladle to remove some of your boiling water into a large glass measuring cup. Once water in cup is hot but not boiling, add miso and whisk until it moves freely.
Boil veggies only a couple of minutes to keep them firm, then remove pot from heat.
Add miso broth back to soup pot and stir.
My brother-in-law loves miso soup and often adds fresh corn, Brussels sprouts, and other goodies. I was fascinated the first time I saw miso soup because it looked like it was alive. When the miso disperses in the warm water, it looks unlike anything else I’ve ever eaten. I’m used to it now, but still enjoy the show when I stir my soup.
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!
Has anybody tried a supplement called Calm Thoughts? I’ve been using it lately and have had a week of fantastic results. I’ve been sleeping almost normally for the first time in years, and my pain is way down.
I’m off all prescriptions, and so thankful to be out of the vicious cycle of one pill begetting another. Chronic pain and illness (including fibromyalgia) often necessitates prescriptions, but I hate taking them. I’m much happier if I can safely and effectively use homeopathic supplements.
Now that I’m sleeping, I wonder if the massive improvement in my symptoms is due to the supplements themselves or the repair my body is able to do while it sleeps. We all know how important sleep is to healing, so it stands to reason for me that my return to restful sleeping might be the best chronic pain medicine available.