15 Ways Anyone Can “See” My Invisible Illness, Fibromyalgia

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By Casey The College Celiac – I remember crying in my mom’s arms inside our darkly-lit kitchen. “I just want to sleep.” I sobbed. “I just want to stop hurting.”

I was eleven years old – and though I might not have known it at the time, it wasn’t normal to be in pain 24 hours a day, seven days a week. But, then again, it isn’t normal to be diagnosed with a chronic illness before your 13th birthday either.

Living with fibromyalgia is hard to explain unless you’ve actually experienced it. After all, we look “normal.” As an invisible illness, fibromyalgia’s symptoms – ranging from chronic muscle pain and fatigue to digestive problems to memory issues – aren’t visible to the naked eye. On good days, we may even seem 100% healthy, going on hikes, family vacations or girl’s nights out like everyone else.

But the (somewhat ugly) truth? By traditional medical standards, we’re not “normal” – and fibromyalgia impacts more of our daily lives than people probably realize.

So what does living with fibromyalgia look like – beyond the symptoms I live with every day? Here are 15 ways – from the routine I keep to the coping mechanisms I often rely on – that anyone can “see” my invisible illness, fibromyalgia.

 

1. My driving “curfew,” which rarely strays past 7 o’clock.

Many people don’t realize that insomnia is one of the common symptoms of fibromyalgia – which is why I’ve been taking sleeping medication since my diagnosis at age 11. I take my pills every day at 7 PM sharp…which is why, by the time that a lot of college students are just getting ready to hit the town, I’m already rockin’ PJs. And during the special occasions when I am out late? I take my pills late and deal with the (insomniac) consequences…or I call shot gun!

 

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2. My love of massages.

Do I really need to explain this one? Constant pain + a good masseuse = one happy fibro warrior. (And, yes, I might be hoping to befriend some of the physical therapist grad students at MSU. I’ll happily trade baked goods for a massage!).

3. The heat packs that I always have nearby, even during the summer.

One of the biggest symptoms of fibromyalgia is muscle pain…and one of the best ways I’ve found to manage it is heat. When my joints ache, I lay the pack across my legs. When a flare-up hits, my shoulders and my heat pack become BFFs. And when I go to sleep at night, a heat pack rests on my chest like a warm, comforting security blanket. My college roommates could always tell that I was getting ready for bed when the microwave started to hum. See me wearing a heat pack during another time of day? Consider it a visible sign of the invisible pain I’m likely feeling.

4. My constant fidgeting in my seat.

When my muscles get too tight or are forced into the same position for a long time, they’re more likely to flare up or get knots. As a result, I try to always keep changing positions – especially during those brutal three-plus-hour lectures in college (and now in grad school). Another reason that evening yoga or stretching is a must…

5. The pillow I always take with me while traveling.

I struggle with the most fibromyalgia pain in my neck and shoulder muscles. If one of those muscles gets tweaked, I can be hit with debilitating headaches for weeks. So when I’m traveling, I never leave my trusty pillow at home. I’ve taken it on airplanes, thrown it in cars during our (various) long road trips, and I’m (of course) bringing it to grad school with me.

6. My love of unscented everything.

There are two kinds of people in the world: the ones who love perfume, cologne, candles and everything scented…and the ones who get a headache from scented laundry sheets. I – and many others with fibromyalgia – am part of the latter group.

7. The days when I can barely remember my own name.

Do you ever wake up in the middle of the night and are so disoriented, you can barely remember where you’re sleeping? Fibro fog feels exactly like that…except you’re awake, and it can last for days. I experience less fibro fog than years ago (thanks to figuring out the diet that works for me + other lifestyle changes that I talk more in depth about here). However, when fibro fog does hit me, even simple tasks become a lot more difficult.

So if you see the fibro warriors in your life struggling to drive to work or remember where they left the phone that they were holding five minutes ago, you’re “seeing” the invisible fibro fog they’re battling that day.

8. My blackout curtains.

With fibromyalgia, getting good sleep is hard. Period. So, even though they might not be the prettiest, blackout curtains are a must in my bedroom.

9. My dislike of big weather changes.

My best friend also has fibromyalgia, and big weather changes make her joints feel especially inflamed and achy. For me, weather shifts can cause the same symptoms or, even more often, extremely bad sinus pain and headaches. Either way, when weather goes from sunny days in the 90s to cloudy days in the 60s, my body is usually not a fan!

10. The jacket that I have nearby 24/7.

Another truth about living with fibromyalgia? Cold temperatures and I don’t get along well. When I’m cold, my joints hurt more than usual and my muscles tense up, which can lead to a fibromyalgia flare. So, yes, I’m that girl who always has a jacket with her – and the girl who wears many, many layers when winter rolls around (especially now that I live in Minnesota!).

11. The random times I’m pulling my hair or earlobes.

I’m sure I’ve gotten a lot of weird looks from these coping mechanisms, but I’m usually in too much pain to care. When I’m having a muscle-tension-induced headache, I’ve learned that pulling on the back of my earlobes can help stretch the muscles that are usually causing the problems. Same with pulling my hair. Like they say…if it’s not broken, don’t try to fix it. And, as strange as these stretches might look, they’re often exactly what my body needs.

12. My love of routine.

Honestly, I like routine. I like knowing when I’m eating, when I’m showering and when I’m taking over the world (a joke…kind of). However, I also follow a routine because of fibromyalgia. I stick to the workouts I know will challenge me without tweaking a muscle or causing a flare up. I stick to my version of a “fibromyalgia diet,” or the foods that can help me, and my joints, feel our best. My life may be a bit less exciting than some, but my life is also less painful than it used to be.

13. My down days.

I’d like to think that I’m a positive person and, I strive to make living with fibromyalgia (and celiac disease) the most fun as possible. Sometimes, though, it just sucks. It sucks to hurt all over your body when you didn’t do anything “wrong.” It sucks that you look “normal” when you feel like a zombie. It sucks that the new *insert some random workout, food, activity* you tried to add to your routine majorly backfired. So if I seem extra emotional, quiet or upset every now and again, know that it’s probably not you. It’s probably just my body, mind and I fighting it out.

14. My love of comfy clothes.

Yes, I’m sure there are plenty of fibromyalgia fashionistas out there (and you totally impress me, if that’s you!). But sometimes, when you’re feeling cruddy, nothing says “comfort” better than PJs or sweatpants.

15.  The plans I’ve unexpectedly canceled.

Sometimes, no matter how careful I am with my diet or exercise routine, a fibromyalgia flare comes out of nowhere. So, if people with fibromyalgia keeps changing plans with you 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.

 

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Credits: (Guest Post for fibromyalgiaresources.com- Shared with the Kind Permission of Casey)

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