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13 Things I Want You to Know About My Fibromyalgia

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May 12, 2020 looks a lot different than May 12 of 2021 for me, starting with my recent fibromyalgia diagnosis. No, I’m not new to the symptoms of this illness, but certainly new to knowing what they stemmed from.

Since receiving my diagnosis, I’ve realized a lot of things about myself and from other fibro warriors out there. I want to share a few things I want others without fibromyalgia to know about my condition.

1. Fibromyalgia is real.

I won’t likely look sick to you. … at least, not the “sick” you may be accustomed to seeing. But, I am. Every day, I battle at least one, if not all, of the many symptoms of this condition, and it’s a very real reality I’m living.

2. It’s not all my head. … but you’re close.

My fibromyalgia isn’t just made-up pain in my head, but a theory is it’s my central nervous system being in a constant state of “wind up” by way of central sensitization. My brain and spinal cord talk too loudly with each other and the result is either I feel pain from things that normally wouldn’t cause pain, or I feel pain more severely than a person without a chronic pain condition like fibromyalgia would.

3. Don’t tell me, “that didn’t hurt.”

Please, please, do not tell me something didn’t hurt me when it really did. Maybe a brush of a shoulder or a light tap to your arm doesn’t feel like a stab or a punch, but with fibromyalgia, like I said before, I can feel pain from things that wouldn’t normally cause others to, and sometimes intensely so.

4. Fibromyalgia is much more than “just” muscle aches.

Fibromyalgia impacts every area of my life. It gives me not only pain, but sleep disturbances, fatigue, cognitive difficulties and digestive issues, along with many other things. Sometimes, it’s the pain that’s the worst part; other times, the fatigue.

5. I’m not lazy when I nap.

I am a person who prides myself on accomplishing things, but some days, I can’t manage to keep my eyes open. Please don’t reprimand me for taking a nap. Let me sleep and encourage me to remember to eat, because my memory gets fuzzy on the worst days.

6. I’m not just a sensitive person (but yes, I am that, too).

Because of central sensitization (what’s believed to cause fibromyalgia), I also have sensitivities to a lot of things, including environmental triggers like light. Photosensitivity causes chronic migraines, sounds can be unbearably loud and smells can be absolutely dreadful to me.

7. Respect my limitations.

There will be times when I just don’t feel up to participating in a certain activity or showing up for a special occasion. I want nothing more than to join in on the fun, but my health may prevent me from doing that. I’m not standing you up by not being present, my fibromyalgia is making me sit the day out. Please respect my limitations.

8. Fibromyalgia can be debilitating.

When I’m in a flare, particularly a bad one, I can’t do anything. I don’t leave bed but to pee, and if I’m being honest here, I sometimes wait to even do that. For some, fibromyalgia is a disability. Please don’t judge.

9. I have moody days.

Mood swings are common with chronic pain. Pain puts a person on edge often. I’m actively trying not to take my pain out on you if you are a loved one or friend by being moody or even emotional. My post-traumatic stress disorder (PTSD) only aids in this, but you matter to me. Promise.

10. Encourage me to have fun when I can.

There are still ways I can have fun without my fibromyalgia being the party crasher. Listen to your fibro warrior and pay attention. You may pick up on ways to include them in the fun and remind them there’s more to life than chronic pain.

11. My energy is precious to me.

When my good days appear, let’s celebrate! Join me on a walk, let’s take a short road trip, let’s eat at a restaurant or let’s binge watch a show together where I won’t fall asleep.

12. Let me know when you’re in pain, too.

I may have chronic pain, but that doesn’t mean I don’t want to know if you’re hurting. Your feelings are valid and I want to listen.

13. Stop the stigma by supporting a cure for fibromyalgia.

Hearing you have an illness that has no current cure sucks. I can’t put that into adequate words to say how much so. But having people first, believe us, and then, support us, is so important. I know it’s not easy to see someone you care about with an incurable illness, but your love means the absolute world to them. It means the world to me.

May 12 (Fibromyalgia Awareness Day), I plan on donning something purple and at least snapping a picture to mark the occasion. I’ll share some fibro facts and try to be authentically me with those around me. Whether or not I do this from my bed is yet to be seen. And that’s the reality of a day in the life of someone with fibromyalgia. We just won’t know until we do.

Unsplash image by Jonas Svidras

Originally published: May 17, 2021
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