“Fibromyalgia is the best fake disease ever. I get to lie in bed all day, I get to see my doctor every month, I get to take handfuls of meds that cost a lot and seem to do very little, I don’t have to socialize, and I get to mooch off loved ones instead of working!” says Shelley of Houston, Texas, who has fibromyalgia, Lyme disease, and chronic fatigue syndrome, and blogs at Chronic Mom. “Aren’t I just the luckiest person in the world?!”
She’s joking, obviously, but it comes from a place of real pain, of feeling like no one — from friends to her doctors — really understands what her illness is, much less how it feels to live with fibromyalgia every day. People sometimes think that because she doesn’t “look sick” then she must be exaggerating her symptoms. Even worse, she’s been accused of making up or faking her disease all together.
She’s hardly the only fibro patient who feels this way.
Fibromyalgia might be the most common disease you’ve never heard of — unless you’re living with it, that is. The chronic illness, characterized by widespread pain throughout the body, affects more than 10 million people in the United States alone and three to six percent of the world’s population, according to the National Fibromyalgia Association. Up to 90 percent of patients are women. All of which is to say that if you have fibro, you’re most definitely not alone.
Unfortunately, because fibromyalgia is talked about so little and not well understood, you may feel alone in your struggles. So we talked to people who are living with fibro about the tips and advice that have made the biggest difference to their quality of life.
1. Take a Very Hot Bath
When it comes to reducing pain, soaking yourself in super hot water may not be your first thought but it can actually provide significant relief, says Joe W., 25, of Toronto, Canada. “I’ve found that taking a really hot — almost scalding — bath helps me the most on days when the fibro pain is bad,” he says.
2. Exercise — But Not Too Much
People with fibromyalgia often have a love-hate relationship with exercise. Staying active is a powerful way to reduce daily pain but it’s often the last thing you want to do when you’re feeling achy and exhausted. “I have a health care background and one of the best tips I’ve learned is that movement actually helps decrease pain signals but it’s been really hard learning how to self-regulate my activity,” says Amy R., 29, of Buffalo, New York. “I can’t overdo it or it will make my fibro pain worse. Plus, how much I can push myself — or not — can change on any given day so I need to be aware of that. By making sure I spread it out, and making sure I get up regularly to move, I’ve been able to manage.”
Her favorite activity? Walking. “If I can walk outside I get the extra benefit of the sunshine, which is great for vitamin D levels.”
3. Clean in Bursts
“Cleaning is often hard for people with fibromyalgia. When we have a good day, we try to go all in to get everything on the list done. One of the best pieces of advice I’ve learned is to stop while you still feel good or I’ll end up in a terrible flare again,” Amy says. “I actually do a small amount of housework every day. I set an alarm for 30 minutes, I start cleaning, and when it goes off I stop for at least 30. If I still have any energy, I’ll do another 30 minutes. Even if I feel I could go more, I tell myself to stop.”
4. Be Flexible with Your Career Goals
Highly physical jobs may not be the best for someone with fibromyalgia, but it can be hard to let go of those dreams, especially if your career is a big part of your identity. Giving up a job you love may feel like one more thing your illness has robbed you of and can really bring you down. The key to dealing with these thoughts? Be flexible, Amy says. “I got my degree as a chiropractor and I loved working in that field but now I work as a professor teaching health care because it’s easier on my body,” she explains. She still gets to work in the field she loves but without sacrificing her own well-being.
5. Laugh Every Day
“I have a friend who has chronic fatigue syndrome and when she heard I was diagnosed with fibro, she immediately sent me this funny meme,” says Andrea P., 27, of Gig Harbor, Washington. “When I opened that text I burst out laughing and it was the first time I’d laughed in weeks. It didn’t change anything but somehow the pain felt a little less.” When Andrea told her friend how much better she felt, her friend replied that was how she stayed positive in the face of a depressing diagnosis. “Now I make it a point to find something that makes me laugh every day,” she says. “And then I send it to her too.”
6. Deep-Six the Doughnuts
Sugar is one of those things that may bring short-term happiness but can make your fibromyalgia symptoms worse in the long run, says Ami P., 36, of Denver, Colorado. “I learned from my functional medicine doctor that diet is a huge factor for me,” she says. “If I eat a bunch of sugar or anything inflammatory I’m in too much pain to sleep at night, which then turns into a vicious cycle of exhaustion and pain.” Instead of giving up all treats, however — Ami used to be a pastry chef in her spare time — she says she’s learned how to make them in healthier ways that still allow her to have something sweet without the inflammatory response.
7. Sprinkle Turmeric on Your Food
“My doctor recommended it and now I have to have turmeric every day,” Ami says, adding that she puts the pungent yellow spice in sauces and drinks (google “Golden Milk”) or takes capsules. It’s a proven anti-inflammatory and it’s a way to add flavor to food in a healthy way, she says. Read more about the benefits of turmeric.
8. Prioritize Your Sleep
Sleep and pain are inextricably linked for Ami so her top tip for managing her fibromyalgia is to get a solid seven to eight hours of sleep every night. Easier said than done though, especially during a painful flare of her illness. “I change positions, use pillows, or even move beds during the night, whatever it takes,” she says. “And my children know if they need something in the middle of the night to go directly to their father.” Here are more tips about managing painsomnia.
9. Try a Yoga Class
When a good friend suggested Ami try hot yoga to help her fibro, at first she was skeptical. “I have a lot of joint problems and had to stop running because of the pain so doing a workout class seemed like not the best idea,” she explains. But yoga turned out to be different. The heat and the gentle stretching help reduce her pain, increase her mobility during the day, and boost her energy, she says. Now she practices yoga twice a week and stretches every night before bed.
10. Buy an Electric Blanket
“When the fibro hits hard, the only thing that makes me feel better is my heated blanket and a good book,” says Melanie G., 24, of Scottsdale, Arizona. “It just feels so comforting and soothing to do something for myself.” The combination of the heat and the distraction helps her cope without falling into despair, she adds. Here are other ways to utilize heat therapy for pain symptoms.
11. Think of Three Words: Cats, Chocolate, and Coffee
“I actually got the idea of cats, chocolate, and coffee, from a friend going through breast cancer,” says Rachel M., 46, of Houston, Texas. “She calls it the ‘3 Cs’ and I know it’s kind of a joke but it really does help to cuddle up with my dog, a bag of Doves, and a hot cup of coffee.” It’s not just about comfort either. Studies have shown that petting an animal reduces stress, dark chocolate is an anti-inflammatory, and coffee can obviously give an energy boost.
12. Go on a Netflix Binge
Sometimes the only thing that helps with chronic pain is to distract yourself, and what’s more distracting than a really good binge-worthy show? “If I can’t sleep because of my pain, I’ll get up and take my laptop to the couch and watch a few episodes of ‘Game of Thrones,’” Rachel says. “My doctor told me it’s actually worse to just lie in bed and think about it. He said if I absolutely can’t sleep I should get out of bed and do something to take my mind off it. He recommended reading but I think that’s just because he hasn’t seen ‘Game of Thrones.’”
13. Don’t Compare Yourself to ‘Normal’ People
People without a chronic illness often give people with fibromyalgia well-meaning but bad advice, which can leave you feeling annoyed at best and like a failure at worst, Amy says. “I used to run 10K races but I know that stuff like that just isn’t going to work for me anymore,” she explains. “Still, I have people telling me to just push through the pain and it will get easier. That may work for normal people but that’s the worst thing you could tell someone with fibro to do.” Instead, she says to focus on the things you can do and take pride in those, rather than comparing yourself to the old you or to people who aren’t sick.
14. Don’t Compare Yourself to Other Patients, Either
It’s hard enough to look at your high school best friend Instagram and not feel a little jealous of her globe-trotting lifestyle as a software engineer who models in her spare time. But when it’s someone else with fibromyalgia — someone who’s going through the same crap as you — it can be harder not to compare. But that’s all the more reason to resist the impulse, says CaraJean O., 39, of Raleigh, North Carolina. “One of the best tips I got from my mother-in-law, who also has fibro, was not to compare myself to other people with it, because there’s a whole range of what’s normal and how people experience it,” she says. “There are some people with fibro who can run marathons or start a business. I struggle to hold down a part-time job. It doesn’t mean that I’m doing something wrong.”
15. Switch Up Your Meds
Medication can make a big difference for some people with fibromyalgia but you won’t know if it will help you, or what kind will work best, if you don’t ask, CaraJean says. “I started on the antidepressant Cymbalta and that worked for about three years. But then the pain starting getting out of control again. I tried to just do lifestyle changes at first, but when I broke down sobbing in my doctor’s office, he was like, ‘You don’t have to live like this,’” she explains. “I switched to Savella and it’s only been a month but it seems to be helping.”
16. Keep a Trigger Journal
Leesa T., 51, of San Francisco, California, has had fibromyalgia for more than 20 years. She says the one thing that’s made the biggest difference has been figuring out what triggers her flares. “When I first got diagnosed I had an amazing doctor and he told me to keep a flare journal, to look for patterns in what foods, activities, and whatnot caused my symptoms to get worse,” she says. “It was the best thing I did. My triggers have changed over the years and thanks to my journal I can see that. You can’t prevent a flare-up if you don’t what your triggers are.”
17. Do Your Physical Therapy
“I also have rheumatoid arthritis so my doctor recommended seeing a physical therapist for my joints,” Leesa says. “But what really surprised me is how the PT helped my fibro symptoms as well so now I stick with my weekly appointments regardless.” The key, she says, is to find a physical therapist who specializes in autoimmune disorders and can give you exercises to do at home as well.
18. Consider a CBD tincture
Thanks to the legalization in many states of marijuana and related products, CBD (cannabidiol) oil has become popular for treating many different types of pain, including that of fibromyalgia. “Honestly CBD has made the biggest difference for me, more than any prescription meds I’ve tried,” says Jennifer L., 29, of Boulder, Colorado. “It helps with the pain, the brain fog, the fatigue, all of it. Best advice I ever got.” She says she uses an oral tincture that she places under her tongue but there are a variety of products you can try. Make sure you talk to your doctor first and do your research as formulations can vary widely.