The Unedited Truth About Life With Fibromyalgia

I’m 31 years old, single, and am living with chronic pain. (I was officially diagnosed when I was a freshman in college… as if college wasn’t terrifying and awkward enough) It makes dating even more fun than dating already is in the world of swiping, matching and messaging. “Hey, I’m Julie, I love the eagles, craft beer, I take my coffee black, and oh yeah, I’m have chronic pain”… really seals the deal. It doesn’t usually come up, but to have a serious meaningful relationship, I’m going to eventually have to tell Mr. Whoever about it, and hope he doesn’t go running (cause let’s be real, I’m in too much pain to chase after him.)

Lady Gaga has come out about having fibromyalgia, and, as much as I love her and would love to be like her, I hate that this is what we are bonded over.

Recently quite a few people have reached out to me after I posted about having a fibromyalgia flare up asking what the hell it is. And, honestly, it’s not that easy to explain, but let me try. (Please note: I am not doing this for sympathy, or attention… just because enough people have asked, I figured why the hell not.)

“But, you look fine, so you must feel fine?”

Aside from the tears in my eyes some days from pain and exhaustion, and the bags under my eyes from lack of sleep, I generally usually look like a normal, functioning human. Which, is one of the complicated and challenging pieces of having fibro. You look fine. You don’t look sick, so people don’t know. (Which is fine for me because I’m not really a fan of all the sympathetic looks and pity)

“So, what does it feel like?”

Another difficult question to answer. Different people have different experiences with it, so here it is from my experience. You know that feeling when you have the flu? The achy, exhausted feeling where even your hair hurts? Imagine that, with the 2nd day soreness from a killer workout. Some days, it’s even more fun when you feel like you have 3rd degree sunburn and wearing clothes hurts.

There is also the numbness/tingling that happens. Not constant, but the feeling that your arms or legs are asleep, but without sitting in a weird position on the couch binging hours of Netflix.

There is also some awesome swelling of your fingers and toes, without eating a ton of salt. (Again, realllllllly attractive when trying to date.)

“Well, if you’re tired all the time, you must sleep a lot, right?”

Ha. No. Another side effect of fibro is chronic fatigue (the fun continues, don’t worry) AND insomnia. Double whammy. You’re exhausted because you are always in pain, but can’t sleep because you are always in pain. It’s nearly impossible to get comfortable enough to sleep. I generally sleep for about 1 hour straight without waking up, and average about 4 hours of total sleep a night. (Getting back to my previous statement about the bags under my eyes… I use A LOT of concealer)

“Okay, well, why don’t you just take medicine?”

I’ve tried. I’ve tried them all. Medicine specifically for fibromyalgia, antidepressants, anti-seizure medicine, all of it. And honestly, none of the medications have helped the pain.

I discovered CBD oil (and bath bombs and lotions) which does help a little, but still, no long term, significant relief. (I am however working on getting my medical marijuana card, because honestly, it’s the only thing that does help take the edge off.)

I’m also able to manage it with light stretching and exercise, but due to a car accident back in May, I’m not cleared to go back to the gym (that’s a story for another day, but also the reason my fibro is this bad. It’s the first time in 5 years I’m back on medication and dealing with it at this level)

“At least it’s only physical, so mentally you must be 100%?”

I wish. Sadly, with fibromyalgia comes anxiety and depression, because, you never know how you are going to wake-up feeling (on the nights you do actually sleep enough to really wake-up). It’s also very overwhelming knowing that no matter what, there isn’t a cure, so there is no light at the end of the very long and exhausting tunnel. So yeah, I’m a little sad about it sometimes. I do my best to mentally stay ahead of it, and I do feel happy and love my life, but some days are a little hard.

There is also the “fibro fog” as it’s referred to (similar to “mom brain”). Because of the pain (physical and mental), it’s sometimes hard to concentrate and remember things. My apartment isn’t very big and I am constantly forgetting what I went to the kitchen for.

“So, how do you do it?”

I’ve gotten to a point where I just have to. I need to get up, and show up, as many days as I can. Don’t get me wrong, I’ve had days where I lay in bed all day and throw myself a pity party because it hurts too bad actually put clothes on, but for the most part I focus on all the good I have in my life, and use that to distract myself from other stuff going on. I like being there for other people in my life to remind myself that even though this sucks, I don’t have to as a person. I try to be the best friend, sister, daughter, aunt, co-worker, whatever, that I can. And, it helps.