10 Unconventional Tips for Managing Fibromyalgia
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Fibromyalgia is different for everyone who has it, from the symptoms to the severity, to the severity of each of the symptoms. Also, for those of us who have fibromyalgia, it’s different for us, each day. Managing an unpredictable and little-understood illness is certainly challenging. I manage my own in some conventional ways: I try to eat healthily, I take vitamins and supplements, I exercise when I feel up to it, and I try to get a decent amount of rest and not “overdo it” in my day-to-day activities.
I also manage my fibromyalgia in some unconventional ways. (But is “unconventional” even a thing for such an unconventional illness?) Maybe some of these tips will work for you, too:
1. To reduce fibromyalgia pain, use a microwavable heating pad — on your feet.
I have a microwavable heating pad filled with beans that is made for your back, but I nuke that thing and wrap my sore feet in it. It’s almost as good as a hot water soak, but it’s so much easier.
2. To cope with sound sensitivity related to fibromyalgia, pretend to listen to music in loud public spaces.
I’m sensitive to loud noises, so I keep my noise-canceling earbuds in my purse, and when I’m stuck in a waiting room with a loud television, or any place there is loud noise, I pop them in my ears to use as earplugs. I’m not even listening to anything; it just looks less weird than actual earplugs.
3. Surround yourself with items of joy and don’t hold back.
I’m a maximalist. I have the walls of my house covered — in some places literally from floor to ceiling — with photos from my travels. I also have over 2,000 books, all of which I’ll never read in my lifetime, but I find walls of books to be immensely comforting. Some people think my house is too busy, or that I have too much stuff, but it is a joyful place for me. Everywhere I look, there’s treasure. My favorite is a collage wall of photos from a 10-week road trip I took with my dog. It’s in my bedroom, for me to look at when I wake up and fall asleep. It’s not just a great memory; it’s something I did with my fibro, so it’s a reminder of everything I still have and can do.
4. Organize your home and life.
I have always taken a lot of comfort in organizing things. It could be getting a couple new books and alphabetizing them within my library, or color-coding my closet. It calms me. When fibromyalgia makes me feel like I’m not in control, I pick something I can control and make it beautiful.
5. Watch the weather forecasts and plan ahead if conditions could trigger a fibromyalgia flare-up.
I obsessively watch the weather forecasts. I know temperature changes and precipitation can trigger a flare-up. How then do I plan? Well, I catch up on chores and work ahead on work, setting up my home and life so I can chill and rest and take a couple “sick days.” It never hurts to stock up on soup or take-out!
6. Make yourself a fibromyalgia care package.
I call mine a Splatquake Kit (my article on that is here). It’s loaded with comfort items for the bad flares. These are items that are for physical comfort, pain relief, as well as mental comfort. Having easy-prep or no-prep food is a biggie.
7. Talk about fibromyalgia as much as possible.
Being open about my fibromyalgia and its symptoms reduces my need to “pass” as someone who is able-bodied. I simply let people know, without shame or fear of judgment (because if they judge, that’s their issue, not mine), and then I avoid the behaviors that can exacerbate my symptoms. I let people know I may slur my speech, and then I don’t panic if I do. I let people know I’m fatigued, so I get grace to lag behind in conversations or leave social gatherings early. I also created the Splat system of communication, which makes it even easier to let people know how I am and what to expect.
8. Create “to-do” lists that account for unpredictable fibromyalgia symptoms.
I made up a thing called the Impact Map, that revolves around the Splat system. It’s a fabulous way to stay on a productive routine and avoid feelings of guilt on bad days, or making excuses on the good ones. I put together all versions of this tool on this page.
9. Use your fibromyalgia for good.
I’ve used my fibromyalgia to reshape my life for the better. The beautiful thing about limitations and disadvantages is the creativity that it inspires when we strive to still live full lives within these limitations. It’s not unlike the structural rules of a sonnet being the very reason these are beautiful poems rather than ordinary prose saying the same thing. Because of the cycles of fatigue and flare-ups, I have fewer moments in my days when I can be active at work or play, so I get the very most out of those moments and live an incredibly rich — and ironically free — life! In fact, the best thing ever about my fibro is how it inspired me to go into business for myself as a professional speaker teaching about invisible disabilities! (Talk about being “free”!) Sometimes I do just hate being chronically ill, but on most days, I’m able to see all the gifts I’ve gained from fibromyalgia and I have peace with it.
Like many others, I had an absolutely terrible 2020, and during that time, I went back to the basics. I asked myself, what was my favorite thing to do when I was a kid? That I could get caught up in for hours and escape the world and all its troubles? For me, it’s LEGO® bricks! Now, I have an epic collection of toys and I love to build things and play with them, and I have other adult friends who come over and play, too. The truth is, when I was 12 years old and stopped playing with toys, it wasn’t because I didn’t like them anymore; it was because I was embarrassed and worried about what other people think. I live with a disease that controls my life and influences who I am, without my consent. I’ve learned that where I do have a choice is choosing to not let other people or societal norms tell me what I can or can’t do or who I should be. And I embrace every bit of this realization to be a happy weirdo fibro warrior.
Check out some more tips from Mighties with chronic illnesses (and see one of my LEGO creations) in this article: 15 Products That Help People With Chronic Illness Manage Their Mental Health.