Fibromyalgia is a condition that is very personal to me, since I have been living with it for over 15 years. And the month of May – even though we are the very end of it at the time of this writing – is Fibromyalgia Awareness Month.

Despite being late to the party with this article, it is still important to me to help do my part in raising awareness because… well, truth be told, fibromyalgia is such a strange condition. And I say this not just as someone who suffers from it, but also looking around and talking with others who have it. You see, fibromyalgia is one of those “invisible” ailments: you never know who has it, unless they tell you, or they are in crippling pain and they then tell you. And for me, when it strikes, there is absolutely no rhyme or reason to it – hence me referring to it as a strange condition.

Defining the condition
The Mayo Clinic starts its explanation of the condition like this: “Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood disorders. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain and spinal cord process painful and non painful signals.”

I can vouch for all of this. But I recently learned that fibromyalgia is the second most common condition that affects bones and muscles. For those suffering from fibromyalgia their conditions are normally a few (or all) of the following: chronic pain (debilitating at times), joint pain, fatigue, fibro-fog, headaches, depression, irritable bowel syndrome, sleep disturbances, anxiety, cognitive issues – and did I mention chronic pain? And there are probably a smattering of other symptoms, and each individual suffering from fibromyalgia has variations of issues.

Fibro: the bully
For me, my condition doesn’t affect me too-too much, I’m lucky in that regard because my day-to-day life isn’t hindered. However, when fibromyalgia strikes, it is awful! I liken it to a big bully: when you’re down or feeling sad or weak, it decides to strike and make you feel worse. That has at least been my relationship with my condition because whenever I am sick or stressed out or just feeling slightly blue, fibromyalgia decides to join the party and my system goes haywire.

This is where the “strange” part comes in, because we are logical beings and there is no logic when you experience a flare-up. How is it that one moment my left ankle hurts so bad that I can’t walk, then 30 seconds later my right wrist feels as if it is on fire with shooting pain down to my fingers and all the joints and ligaments and I can’t even move my fingers, then a minute later I have excruciating back pain? These things aren’t connected, like not immediately, so how come the pain ping-pongs around my body like this? This, for me, is the strange part. And this is also the part that I have a hard time with… well, that and the pain that I experience in those moments. I will liken the pain that I experience with the worst of my flare-ups to the pain of childbirth. Yep, that’s how painful it can feel.

Another challenge (again for me, and I can’t speak for others) is that when I get hurt (like bumping into something, getting hit with a ball, someone pushing your arm, falling down, etc.) I actually don’t know right away if I’m hurt or not. This may sound strange, and I am totally cognizant of that. What I mean is that when I get hurt my body goes, “Okay, oww-ee, something hurts! Nervous system: assemble! Let’s shoot pain out everywhere – all at once!” And so all at once, the point of initial pain hurts of course but so do other parts of my body. And so it takes me a while to have my body settle before I can take a full assessment of if I am actually hurt, or if my fibromyalgia is just doing its thing and being a jerk.

Of course, not all flare-ups are the big bad wolf kind where the pain is at an eleven on a scale of one to ten. I often experience mini flare-ups throughout the year, or sometimes my joints will hurt, especially in the winter months.

Treatment
There is unfortunately no cure for fibromyalgia and the only thing that people like me can do is figure out what works to deal with it within your life and lifestyle. As the Mayo Clinic states, there are medications available that help only to control symptoms, but otherwise all you can do is make lifestyle changes: exercise, relaxation techniques along with implementing stress-reduction measures.

My rheumatologist told me early on that if I try to live a balanced life (eat well, exercise, sleep well, maintain low levels of stress, and make sure that I feel well mentally) that I could most likely manage my fibromyalgia pretty well, because I was unwilling to take medication. And so far, so good!

But I’ve found that these things go hand-in-hand: you eat well = your body feels better. You exercise = your body feels better and you are able to rest better = you sleep better. If you sleep well = you are more rested and your body feels better. You don’t have a lot of stress = your body feels better. You feel pretty good mentally = your body feels better.

See how that word-math works? That’s at least what I’ve found works for me. And by now I’ve had 15 years of trial-and-error for what works for me. As mentioned, everyone suffering from fibromyalgia may have different levels of pain, their pain thresholds may be different, they may have different triggers, and different challenges. But for anyone suffering from it, I implore you to work with your rheumatologist and your life to find what works for you to minimize flare-ups and pain.

And for those people who are just learning about what this condition is, let me just tell you that it is very real. I say this because I’ve met a few people who brush it off, make comments that it’s “just all in your head” – or other such dismissive things because they can’t physically “see” my ailment. Well, for those, let me reiterate that it is very real. It is NOT a mental condition, it is very much a physical condition that affects my entire body, and yes, it does affect me mentally at times. How could it not? When your entire body is screaming at you in pain, and you are literally keeled over in pain, unable to move, then for sure! Those moments are where the mental part of this condition kick in. And those are the hardest moments for me.

So let me just ask this of you, dear reader, whether you are someone who suffers from this (I feel with you, my friend), or those who know someone who has this, or if you’re someone just learning about it: have compassion. The people who are battling fibromyalgia are dealing with it in some fashion every day of their life, and some days are harder than others. Have compassion, have patience, and be kind. It goes a long way for us.

To learn more about fibromyalgia you can visit these websites:

https://www.fmaware.org/

https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780

https://my.clevelandclinic.org/health/diseases/4832-fibromyalgia

https://rheumatology.org/patients/fibromyalgia