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    10 Unconventional Tips for Managing Fibromyalgia

    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. 10. Play! 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.

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    Dear Daughter: You Are So Much More Than Your Rare Disease

    Dear Daughter, As a newly pregnant couple, we started talking about this little human growing inside us. We loved you without knowing how you look, what you are, and without getting anything in return from you. We could feel your invisible presence, and we were eager to meet you! We were so happy and had no anxiety about the pregnancy. We felt we were living in a dream come true until we were told the doctor saw some tiny bright spots on your heart and sent us for more tests. A few tests later, we heard some big long words that gave you a probable diagnosis of a rare genetic disorder called tuberous sclerosis complex (TSC). It felt like someone had pulled the chair out from underneath us. The doctor handed us a piece of paper with just three words written on it to research. Doesn’t sound a big deal, right? It’s only three words. That’s what we told ourselves. After researching, we found what was hidden behind those three words on that otherwise blank paper. TSC causes benign (noncancerous) tumors to grow on different parts of the body, mainly the brain and kidneys, but also in places like the heart, lungs, and skin. The tumors can cause different symptoms such as seizures, learning disabilities, developmental delays, kidney problems, and issues with vision or breathing. Like the doctor told us, TSC is a rare condition, but there’s so much more to the three-letter acronym than most people would think. This probable diagnosis of course didn’t make us love you less. In fact, you inched even closer to our hearts. You kept growing day by day and our love got stronger and stronger for you. Finally, the time came – we were all set to welcome our tiny little girl. Soft like clouds, bright like sun, soothing like moonlight, melodious like your Dad … and here you are to say hello to this world! In a fraction of second we were a family of three, nothing unusual in this world but so magical for us. Then, a team of physicians walked in and asked us to sit comfortably. We knew we were scared about what the results would be but happy at the same time about having this little bundle of joy in our arms. Heart beats, moments, memories, and everything else got mixed up slowly, and I felt frozen. Instead of coming to the point directly, doctors seemed to be talking about everything at once. We understood things were not right. We had you only for 10 hours, but now we’re hearing that due to TSC you’ll never be able to travel outside the country, walk, talk, or experience life like a “typical” child. Those moments when we first heard your TSC diagnosis from the doctors and the weeks, months, and years since have been challenging. But we had that glittering shining light in your eyes, daughter, that’s what made us survive and keep going stronger and stronger. Parenting is certainly difficult for everyone but especially those parents navigating life with a medically-complex child, like my daughter with TSC. We’ve had an unexpected life but one truly filled with magic. We will never know how a child without TSC learns things, explores their environment, loves you as a parent, and matures. But we sure do know how hard it was for you to learn to walk independently. When your first and second birthday passed without taking steps, we started to give up on the dream of you walking. But we let you progress at your own pace, and we kept supporting you 100%. Then, 33 months later, you did it — you took your first steps on your own. Everyone records their child’s first steps, but I didn’t. I watched you walking toward a toy during physical therapy, and I didn’t record for your dad because I couldn’t take my eyes off you. This example is one of many “little wins” we celebrate that we might have taken for granted if you didn’t live with TSC. We didn’t have the chance to record your first steps, but we did record your first seizure. Over 90% of people living with TSC develop epilepsy, and unfortunately, you were one of them. The night before your first Christmas, your dad recorded a video of you making some unusual facial expressions and sounds. It turns out we were recording seizure activity. We still do this five years later for your medical team to review. We try and also capture the less worrisome aspects of your life — the parts we’ll treasure forever: your smiling, rolling over, pushing up, feeding, saying “Mamma” and “Papa,” giggling, popping bubbles, being silly — you just being you. Even though we get to experience all these normal childhood moments with you, there’s never a day we don’t worry, never a day we don’t think of doctor’s appointments or therapies. And because of epilepsy, there are days where your smile disappears, days where you don’t do any of those “normal” activities we like to record. I held you in my arms during and after your first seizure, and I still continue to do so 60 months later in your life. We pray for you to get stronger and stronger. We help you learn the same thing several times over again, like clapping, because forgetting and relearning is part of what you have to live with.. I dread you forgetting how to say “Mamma” or “Papa” after an emergency hospital stay or even walking. But I do know one thing: I can’t ever forget how much you love us and how resilient you are. That’s how our life is: sweet and sour and sometimes complicated, but it is our life with our little girl. I feel so happy that I couldn’t control myself from crying when I first saw you rollover, sit up, smile, push up to stand, walk, run, and say basic words. We are so proud to be your parents.. I fear losing you, but know that my love for you will never fade. We love you so much, Mamma and Papa

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