Living with a chronic condition is like living with a run-down sedan with the check engine light on, the taillight busted and duct tape on the windows. And you’re never going to be able to trade it in. It seems to be lasting just as long as all the other cars, but it’s not a sweet ride. A little over 3 years ago I was diagnosed with Fibromyalgia. At first, I was actually relieved because I had spent years feeling like I was crazy, visiting doctor after doctor about my symptoms. I felt vindicated because it wasn’t all in my head, as some doctors had suggested, and I felt like now I could move forward, with a treatment plan. What followed were years of medications and treatments ranging from Lyrica to physical therapy to dry needling to acupuncture to amphetamines to veganism to Shakeology to massage. I knew there was no cure, but I figured surely there was something, anything, that would at least improve my symptoms. Nothing, not one damn thing, made me feel more than slightly better for more than a day, let alone improve my symptoms long-term. I read all the books. I did everything my doctors told me to do. And it only got worse.
Then came a trip to the Mayo Clinic.
This past January, I attended the three-week Pain Rehabilitation Clinic hosted by Rochester’s Mayo Clinic (known as the “PRC” to its participants — we’re pretty cool). I hope that in sharing what I learned from the experience, it might help someone who needs it.
- Rethink your medications. Many medications (in particular, the opioids and benzodiazipans) that are commonly prescribed, while appropriate for acute pain, are actually ineffective or even detrimental for chronic conditions. You will do better without them. Talk to your doctor about safely weaning off of them.
- Get good sleep. Easier said than done, but it’s absolutely crucial to make it a prirority. Listening to a guided meditation track is usually a pretty effective approach to falling asleep. If your problems run deeper, get a referral for a sleep doctor to get the full workup.
- Relax. Chronic stress is incredibly damaging to your body’s central nervous system. Stress of any kind, whether it’s kids that won’t stop fighting, a horrible boss, or a bear chasing us through the forest, triggers the body’s sympathetic nervous system, also known as the fight-or-flight system. This is supposed to be a good thing — when we are being chased by a predator, for example, it’s incredibly helpful get a shot of adrenaline and cortisol pumping through your body. Your heart rate increases, your senses heighten and your body tenses up. You run faster, you’re stronger and you think more sharply than normal. But the body doesn’t understand that the everyday stresses of work and home life don’t need the same kind of reaction. Your body just interprets stress as stress, and continues dumping chemicals into your body at toxic levels. Your heart rate and blood pressure rise permanently. Your body’s sensitivity to pain increases. The other component of the central nervous system is the parasympathetic nervous system, also known as the relaxation response. Relaxation triggers this system, which results in slowing down your heart rate, lowering your blood pressure, relaxing your muscles, releasing those feel-good chemicals like dopamine into your system and — ta-da! — dampening your body’s sensitivity to pain. Over time, with consistent practice, relaxation can actually cause your brain to feel less pain. One method is through meditation. I use the Calm App, but there are plenty of others out there. Make it a daily habit and you will feel a difference. For an excellent primer on how to meditate for people who think they can’t quiet their mind, read Bliss More: How to Succeed in Meditation Without Really Trying by Light Watkins (if that’s his real name, he was destined to become a guru). Note, however, that it doesn’t have to be meditation. There are other techniques that can trigger the relaxation response, such as guided imagery visualization, guided passive progressive muscle relaxation, diaphragmatic breathing, biofeedback, yoga, hypnosis, or even acupuncture. Listening to a guided track may be easier than sitting in silence, and that’s ok. Experiment with different techniques to see what works best for you. And what does it take to significantly trigger your body’s parasympathatic nervous system? 30 minutes a day. That’s it. Best of all, you can break it up into 10 minute sessions — I try to medidate for 10 minutes in the morning, 10 minutes in the afternoon, and then listen to a guided relaxation CD as I’m falling asleep.
- Get happier — mindset is everything. Studies show that people wholive with chronic pain or illness tend to be more stressed and more depressed than the population at large. (I mean, duh, right?) Understandable as it is to be miserable when your body doesn’t seem to work right, it’s not helpful, and, in fact, counterproductive to the task of feeling better. If you want to get better, you need to get happier. It’s a never-ending cycle — pain causes negative feelings. Negative feelings increase your pain — literally. Negative feelings cause you to respond a certain way. More pain leads to more negative feelings. The PRC recommended using cognitive behaviorial theory to break the cycle. CBT is a very practical, action-oriented program for changing your thoughts, feelings, and actions about and around yourself and various aspects of your life. Essentially, it is retraining your brain towards a healthier, more realistic mindset. Find a CBT counselor in your area and make an appointment today. If you’re not quite ready for that step, get a copy of The CBT Toolbox: A Workbook for Clients and Clinicians by Jeff Riggenbach to get started on your own.
- Even if you don’t do CBT, you can adopt a better mindset by eliminating “pain behaviors”. A pain behavior is anything you do in response to pain or fatigue in an effort to feel better, but which doesn’t actually really help. This includes, for example, ice, heat, ibuprofren, Icy Hot, wearing joint braces, alcohol, opioids, complaining about the pain, groaning and limping. Most of these (other than alcohol, probably) are appropriate tools for when you’re suffering acute pain, like a sprained ankle or a sinus infection. None of them make chronic symptoms better and in many cases they make them worse. The behaviors draw attention to your pain — both from your own brain, resulting in strengthening those pain sensitivity pathways, and draw attention from others around you, resulting in them treating you differently — perhaps like you’re fragile and can’t do anything — resulting, again, in strengthening the pain sensitivity pathways in your brain. Pain becomes worse. The best thing you can do for chronic pain is to stop feeding it attention and it will get smaller. Stop talking about your symptoms. Stop wearing that wrist brace. Distract yourself with stuff you really care about and you’ll find yourself living your life, and possibly enjoying it.
- Move. Start with a five minute walk and add a minute everyday until you can do 20–30 minutes/day. And those 30 minutes can be broken down into three 10-minute walks.
- Do everything with moderation. This is hard for me because I’m an all or nothing kind of person — I don’t like to half-ass a thing. But I’ve realized lately that doing something slower or with less intensity is not half-assing it even if I could handle a lot more when I was younger. It’s not where I am now, older and living with fibromyalgia. If going at full-speed leads to crashing and burning, then full-speed is not optimal. For example, I love running, but I have to accept the fact that I can’t do it everyday — a couple days a week, tops, alternating with walking on the other days. And when I do run, it really means jog, not sprint. This approach has allowed me to consistently workout nearly everyday since January, which is pretty incredible.
- Use time-based pacing, a scheduling technique of scheduling activities to last a certain amount of time rather than going by how long it actually takes or by how you’re feeling at that moment (whether good or bad). You write up a schedule and stick to it. And in doing so, you make sure you’re alternating active and sedentary activities in short time frames (10–30 minutes, depending on your stamina and the type of activity) in order to conserve energy and avoid burnout. It seems counterintuitive to time management efficiency — it doesn’t allow for a lot of batching, after all — but it’s incredibly helpful for people with a limited reserve of energy. Tidy up the house for 20 minutes, sit down and pay bills for 20 minutes, then wash dishes. The key is to stop the active activity after the 20 minutes even if you’re not done or even if you still have plenty of energy. This way, you’ll be able to avoid burnout and get more done throughout the week. Workouts can be broken up this way too — instead of going on one 40-minute walk, which might leave you too tired to move the next day, go on four 10-minute walks spread throughout the day, which will leave you energized. Spread out big chores across multiple days — mow the front lawn one day and the backyard the next. Your neighbors might think you’re crazy, but you’ll feel better. Same for running errands. Anyone with a chronic condition knows how exhausting running errands is. After dropping the kids off at preschool, I’d run all over town for 3 hours trying to fit everything in. By the end of the day, my legs would be screaming at me, my entire body felt like a wet noodle, my eyes would be burning, I’d have a migraine, and my brain would feel like someone swiped it out of my head and replaced it with bubbles. But I figured, errands are bad, so let’s just cram it all into one day and get it over with. The better approach is to do one, maybe two errands in one day and spread them over the week.
- Speaking of errands, eliminate as many of them as possible. While you’re limiting yourself to 1–2 errands/day, you’ll also want to make sure you have as few places as possible to go to throughout the week. Amazon Prime is amazing, as is their Subscribe & Save feature. I have everything from toilet paper to toothpaste to protein powder on Subscribe & Save. At a minimum, put the big and heavy stuff on subscribe to conserve energy. I also use a dry cleaning delivery service (no more expensive than the regular shops) and a grocery pickup service (a bit more expensive). Other delivery options to look into — meals (either prepared or a meal kit service), produce, meat, clothing, pet products, diapers, prescriptions, contact lenses — and on and on. Every time you have something to do, first ask yourself, can I get it online or can I do this over the phone? When you want to schedule a playdate for your kids, be proactive and ask them to come over rather than having to end up going to their house or meeting at a park. Sure, you might have to tidy up a little first, but that’s so much easier than getting the kids ready (which involves getting them to go potty before we leave (or can you at least try?), insisting that they wear pants, battling them over shoes, packing a snack and water for each, switching cups because I gave them the wrong cups), getting myself ready (phone, snack, water, wear clothes appropriate for being out in public, shoes, forget 1–2 items upstairs), getting the kids in the car, lugging all of our crap, driving across town, going some place unfamiliar, getting the kids ready to leave (they don’t want to leave), getting the kids in the car, lugging all of our crap, driving back across town and having to cook dinner the second we get home because we stayed too long because the kids didn’t want to leave — and they didn’t want the snack before but now they’re about to die of starvation. Or maybe it’s just me. But basically, anytime you have the option to stay home, take it.
- But do leave the house everyday. The other extreme, one which happens a lot more in the dreary winter months for me, are those days where you feel too lethargic and fuzzy to move and you stay home in pajamas all day, sometimes for days on end. It’s not good for you or for your family. Even if you’ve eliminated all of your errands — great! — you still want to go somewhere, even if it’s just a short walk. When I have the kids with me, we’ll go to the park, the library, or stay at their preschool after pickup to play on the playground for a little while — these are all fairly low key activities that keep the kids entertained without asking too much of me. Bonus points if it involves socializing with other parents — see below.
- Social support is vital. It’s really easy to lose touch with friends and family when you’re too damn tired to do anything, but it distracts you from the pain and it feeds your soul.
- Find meaning. All too often, chronic illness takes over our lives. It becomes the only thing we really think about or deal with or “do”, making our lives smaller and smaller and so negative. THIS IS CRAP. It’s bullshit. Again, easier said than done, but you *have* to put your pain in its place. Even if you are unable to work, do something — volunteer, spend more time with family, write in a blog (a-hem) — and start feeling a little more meaning in your life.