By: Dr Alex Robber
By Casey The Celiac College–I remember crying inside our darkly-lit kitchen in my mom’s arms. “I just want to sleep.” I was sobbing. I was eleven years old –and while I may not have known it at the time, it wasn’t natural to be in pain 24 hours a day, 7 days a week. But then again, before your 13th birthday it is not natural to be diagnosed with a chronic disease either.
It’s hard to explain dealing with fibromyalgia unless you have experienced it. They appear “human” after all. As an invisible condition, the symptoms of fibromyalgia–ranging from constant muscle pain and tiredness to digestive problems to memory problems–are not visible to the naked eye. We may even look 100 percent safe on good days, going on walks, family holidays or girl’s nights out like everyone else.
But the facts, (somewhat ugly)? We are not “natural” by traditional medical standards-and fibromyalgia affects more of our daily lives than people are likely to know.
So, what does it feel like to live with fibromyalgia-beyond the signs that I encounter every day? Here are 15 ways that anyone can “feel” my chronic disorder, fibromyalgia–from the routine I maintain to the coping mechanisms I still rely on.
My driving “curfew,” which rarely strays past 7 o’clock.
Most people don’t realize that insomnia is one of fibromyalgia’s common symptoms–that’s why I have been taking sleeping pills since I was diagnosed at age 11. I’m taking my pills sharply every day at 7 p.m. that’s why, when other college students get ready to hit the city, I’m already rocking’s PJs. And when I’m out late, on special occasions? I’m taking my medication late to deal with the (insomniac) consequences… or I’m calling shotgun!
My love of massages.
Do I need to even explain this? Constant pain + strong masseuse = one happy warrior with a fibro. (And, yes, I do hope to buddy some of the MSU graduate physical therapist students. I’ll gladly trade baked goods for a massage!).
The heat packs that I always have nearby, even during the summer.
One of the major symptoms of fibromyalgia is muscle pain… and heat is one of the best ways I’ve learned to handle it. I lay the pack over my legs when my joints are in ache. My shoulders and my heat pack get BFFs when a flare-up happens. And when I go to sleep at night, a heat pad, like a dry, comfortable safety blanket, rests on my stomach. My college roommates could always tell when the microwave began to hum, that I was getting ready for bed. See me wearing a heat pack during a different time of day? Find it a clear indication of the hidden pain I’m probably feeling.
My constant fidgeting in my seat.
They are more likely to flare up or get knots when my muscles get too tight or are pressed into the same position for a long time. As a result, I’m still trying to keep shifting positions–particularly during those intense 3-plus-hour lectures in college (and now in graduate school). Another reason why stretching or yoga at night is a must…
The pillow I always take with me while traveling.
I battle my neck and shoulder muscles with the most fibromyalgia pain. I can be plagued with debilitating headaches for weeks if one of those muscles is tweaked. So, I never leave my trusty pillow at home when I’m traveling. I took it on aircraft, threw it in cars during our (various) long journeys on the road, and I’m (of course) taking it with me to grad school.
My love of unscented everything.
The planet has two kinds of people: those who enjoy perfume, cologne, candles and all scented … and those who get a headache from scented laundry sheets. I-and many others with fibromyalgia-belong to this latter group.
The days when I can barely remember my own name.
Do you wake up in the middle of the night, and are so disoriented, can you barely remember where you sleep? Fibro fog feels just like that… except that you’re awake, and it can last days. I feel less fibro fog than I did years ago (thanks to finding out the diet that works for me + other lifestyle changes that I’m thinking about here in greater depth). However, even simple tasks get a lot more difficult when fibro fog hits me.
So, if you see the fibro warriors trying to drive to work in your life, or recall where they left the phone, they kept five minutes ago, you’re “reading” the invisible fibro fog they’re battling that day.
My blackout curtains.
With fibromyalgia it is difficult to get a good sleep. Time: Period. So, although they might not be the prettiest, in my bedroom, blackout curtains are a must.
My dislike of big weather changes.
My best friend also has fibromyalgia and the big changes in weather make her joints feel particularly inflamed and achy. Climate changes can cause the same symptoms or, often, extremely bad sinus pain and headaches, for me. Anyway, when weather goes from sunny days in the nineties to rainy days in the sixties, my body is usually not a fan!
The jacket that I have nearby 24/7.
Another fact about living with fibromyalgia. Cold temperatures and I’m not getting along very well. My joints hurt more than normal when I’m cold, and my muscles tight up, which can lead to a fibromyalgia flare. So, yes, I’m that girl who has a jacket with her all the time –and the girl who wears many, many layers when winter rolls around (especially now that I live in Minnesota!).
The random times I’m pulling my hair or earlobes.
I’m sure I got a lot of strange looks from those coping mechanisms, but I still have too much pressure to be cared for. When I have a headache caused by muscle tension, I’ve found that pulling on the back of my earlobes will help loosen the muscles that normally cause the problems. Same with hair pulling. As they say…if something isn’t broken, don’t try to repair it. And, however weird these stretches can feel, they are often just what my body needs.
My love of routine.
I do like routine, frankly. I like to learn when I sleep, when I shower and when I take over the world (a joke… kind of). I adopt a schedule though due to fibromyalgia as well. I stick to the exercises I know that without tweaking a muscle or triggering a flare up I can push myself. I stick to my “fibromyalgia diet” version, or the foods that can make me and my joints feel the best we can. My life might be a little less thrilling than some, but my life is also less stressful than it once was.
My down days.
I’d like to think I’m a good person, so I’m trying to make life as enjoyable as possible with fibromyalgia (and celiac disease). But sometimes it just hurts. When you’ve done nothing “wrong,” it hurts to damage your entire body. It sucks you to look “human” if you feel like a zombie. It hurts that the new inserts some unintentionally backfired workout, food, activity* that you have tried to add to your routine. So, if every now and then I seem overly sad, quiet or irritated, know that it is probably not you. Possibly it is just my body, mind and I fight it out.
My love of comfy clothes.
Yeah, I’m sure there are plenty of fibromyalgia fashionistas out there (and if that’s you, you totally inspire me!). But sometimes, nothing says “warm” better than PJs or sweatpants when you’re feeling cruddy.
The plans I’ve unexpectedly canceled.
Often, no matter how vigilant my diet or exercise routine may be, a fibromyalgia flare comes from nowhere. So, if you keep changing plans with people with fibromyalgia at the last minute, try to see it as a symptom of their invisible illness… and not a reflection on the strength of your friendship.