18 Fibromyalgia Survival Tips from Fellow Patients

If you think you’ve tried everything for managing fibro, you might find new advice worth testing here

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.

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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.

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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.

Reference<https://creakyjoints.org/about-arthritis/fibromyalgia/fibromyalgia-symptoms/tips-for-managing-fibromyalgia/