Living With Fibromyalgia Symptoms

What It Takes to Manage the Condition

Managing fibromyalgia and overlapping conditions isn't just a full-time job—it's a lifestyle. I've made changes to every aspect of my life, some minor and some major, in order to adapt to my symptoms and minimize the things that exacerbate them.

woman collapsed in fatigue
Macduff Everton / Getty Images

To help give you some insight into what it means to adapt your life to fibromyalgia, I've written about what my typical day is like. My lifestyle changes were made to deal with my specific symptoms and situations. They aren't the right adaptations for everyone, but they can give you an idea of the types of changes you might be able to make.

Here's how I got through a typical February day.

Managing Fibromyalgia

My alarm goes off at 7:45. I turn it off, proud of myself for not hitting the snooze button, then turn off the CPAP (continuous positive airway pressure) machine I need for obstructive sleep apnea. I then remove my CPAP mask and the splint I wear on my teeth at night so I don't grind them and aggravate my TMJ (temporomandibular joint dysfunction.)

My left hip and my neck are screaming with pain. Before getting out of bed, I do a mental assessment of the rest of my body. My hands are stiff but not too sore for a change. Shoulders and knees seem okay. Feet? Puffy and stiff, and still sore from the walking I did yesterday. Those first few steps are going to hurt.

Still lying down, I do some light stretching for my hips, neck, and arms. I then sit up slowly so I don't make myself dizzy and do a few more stretches. These are a combination of yoga, physical therapy, and things I've run across over the years that help keep me loosened up.

I look down beside the bed to see if I remembered to put my slippers there. I know my feet will be happier if my first steps are cushioned instead of right on the floor, but alas, I didn't put them where I should have. I stand slowly, my hips groaning and creaking, and take two painful steps to the closet. The carpet feels like sandpaper and the pressure of the floor makes my feet ache. I get my slippers and put them on. That's a little better.

I wake up my kids to get ready for school. Then I bundle up in warm clothing and doze on and off on the couch until it's time to drive them there. Fortunately, we live close to the school and it's only a fifteen-minute round trip. Back home, I shed the extra layers and rub my hands together, trying to warm them. They always get chilled, no matter what I do.

Because I have horrible insomnia and I have yet to find effective treatments for it, I've only had about four hours of sleep. I rinse my TMJ splint and put it back in, strap the CPAP mask into place, and go back to sleep. Or, at least, I try. I mostly do a lot of tossing and turning.

Around noon, I get up and go through the self-check and stretching process again. I'm happy to see that my feet are feeling quite a bit better. Still, it's a bit cold, so I put the slippers back on, along with my super-soft terry cloth robe. It zips up the front because I can't tolerate a tie around my waist.

I wash my TMJ splint and CPAP mask and put them aside to air dry so they're ready for tonight. I then make my morning tea. I've given up coffee because it bothers my stomach and makes my tremor worse. I'm grateful that the caffeine in tea doesn't have a negative impact on my fibromyalgia symptoms. (I've experimented at length to make sure!)

I open up my pill sorter and dump out 20-some pills, most of the supplements. I separate them into four groups and wash them down with cranberry juice. (I prefer a strong-flavored juice to help cover up the taste of them. Otherwise, I'm stuck with fish and roots. Bleh.) I then use a saline nasal spray, put my sublingual B vitamins under my tongue, and eat my gummy probiotics.

My stomach is a bit unsettled today, so I have a whole-grain bagel and cream cheese for breakfast.

Now it's time for work. This is the biggest lifestyle change I've made due to illness: I used to be a TV news producer, working about a 50-hour week in a high-stress, noisy, chaotic environment. Now I work from home, in my quiet office, and schedule my work time around my life and my symptoms. (I use the term "schedule" loosely. I work when I'm awake and not in too much pain.)

I turn the heat up a touch so I don't get a chill and sit down in my ergonomically correct chair in front of my ergonomically designed computer workstation. I open my laptop and get started.

After about two and a half hours, my husband comes home and I realize I've sat in one position for too long. I stretch my hands and arms, then stand up—slowly!—and apologize to my lower back. In spite of my efforts, I have gotten fairly cold.

I need to pick up my kids from school soon, so I run a bath and pour in some Epsom salts. I soak in the hot water for as long as I can and get out feeling toasty warm. My muscles have loosened up a bit, too.

As I get dressed, I realize that I overdid it on the heat. My forehead won't stop sweating. Since I'll be going out into the cold soon, though, the extra warmth will be worth it.

Back home with the kids, it's time to start cooking dinner. I start cutting up some leftover chicken and my hands protest, so ask my husband to do that for me. I put together a simple chicken salad while the kids set the table.

After dinner, while the kids clean the kitchen, I do a couple of loads of laundry, with my husband's help. Then, after we all watch a show together, it's time for everyone but me to go to bed.

With the house quiet again, it's time to do a little more work. The desk chair just doesn't feel comfortable, so I sit in a recliner and use a lap desk and pillows behind my back to make it as ergonomic as possible. I put my TENS unit on my hips, then later move it to my neck, then my shoulders, then my left leg before finally putting it away.

Around midnight, I wrap up my work, then turn on the TV and spend some time checking email and social media. My brain's a bit foggy, so I have to rewind the show a few times because I missed what was happening while I was distracted by the computer.

After a trip to the kitchen to take my nighttime pills and make a calming herbal tea, I lay down on the couch and start another show, hoping I'll soon be tired enough to sleep. I doze off on the couch around 3:45 a.m.

When my husband gets up for work an hour later, he wakes me up. I grab my CPAP mask and TMJ splint and head to bed, stretching my hips a bit and making sure my alarm is set for 7:45. In less than three hours, it'll all start again.

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By Adrienne Dellwo
Adrienne Dellwo is an experienced journalist who was diagnosed with fibromyalgia and has written extensively on the topic.