Have you ever wanted to go a little further into what Fibromyalgia really is?
This Intermediate Guide to Fibromyalgia is here to help you understand what someone with Fibromyalgia is really going through. Written from the perspective of someone who actually has Fibromyalgia (a chronic pain condition).
I do not claim this is what everyone with an invisible illness goes through, these are only my personal experiences.
To check out the first six things you need to know, go look at this post, A Beginners Guide To Fibromyalgia.
Here are six more things for you to know:
One: Everything hurts
Though this is a bit of a repeated one from A Beginners Guide To Fibromyalgia I think it’s time to really go into further depth on this. Because when I say “everything hurts” I mean EVERYTHING. Not just physically how it all feels right now, but doing or touching things affects your body as well. Not to mention it can take an emotional toll on you.
Showering and shaving and clapping, knocking on doors, laying down, sitting and walking. All of these “activities” these normal, everyday functions…cause pain and exhaustion.
I have had these pains for so long that it doesn’t always click in my head that maybe it shouldn’t hurt when I do “X.” Should showering hurt? Should knocking on a door hurt? Someone tell me, because that’s normal to me.
Every little normal function, big or small, is something that I experience pain from. You get used to it hurting and I guess that makes it “easier” to function through the pain. Because you have to. But it isn’t easy when everything, every little thing, hurts.
Two: Fear
Fears come with Fibromyalgia. Chronic pain brings a lot of mind games.
Sometimes a new pain pops up and you find that now you worry if this will be permanent.
- Will I never be able to use this body part like normal again?
- Will this pain last forever?
- How do I retrain myself not to apply pressure or to sit in this way?
Not just all of that, but fear affects your future thoughts. It affects how you view the world.
- Will I even be able to sew or type tomorrow?
- Will my passions and work have to go away?
- Will I one day have to shave my head because it’s too much work to wash and brush my hair? I’ve heard stories!
There are so many fears and worries because of the constant aches and pains. I’m used to its presence, but sometimes because it never goes away, it worries me about the future. If this is me now, in my 20s…how will things be when I’m in my 30s or 40s?
Three: Phantom teeth aches
This one doesn’t happen often, but when it does it lasts for two to seven days. The teeth and my jaw, usually on the left half of my face, will hurt so bad I feel like I want to bite something or just constantly chew to try to stop the pain.
And if I can’t find something to bite, I will chew my cheek raw.
It’s a constant gnawing pain that no matter what I do I can’t get rid of it. But two to seven days later, it will disappear as if I never had the problem in the first place. The only evidence left is little bites and cuts inside my cheek.
I’ve never heard anyone else mention having this problem. If you have this issue with your chronic pain condition please let me know in the comments so I know I’m not alone!
Four: Spider fingers
How to even begin with this one…
The front of my Fibromyalgia pain is found in my hands, fingers and toes. And boy do my hands fight it! I find no better way to describe my hand’s reaction to the pain than to call them “spider fingers.” They’re long and awkward and constantly moving and contorting in all sorts of ways because they’re uncomfortable.
To me they kind of look like a daddy long legs making its way across the wall.
My fingers hurt so I move them. They hurt when I move them. Is it better to stay in one place? Perhaps. But I find myself unable to do just that.
Five: Always moving
To tag onto the previous one, I am constantly moving.
I would compare myself to a child who needs to go to the bathroom. Except I don’t need to go. But I can’t ever stop moving. Sitting at work I change positions 100 times in 15 minutes.
I’m constantly rolling my shoulders and ankles, making the spider fingers, and flexing anything and everything in an attempt to stop the hurt.
I change positions so much in an attempt to find a comfortable spot, but it never seems to last long if I do find a good angle. It’s just…dare I say, obnoxious? If somebody constantly moving with an inability to sit still drives you up a wall, don’t sit near me because I guarantee you I will be sitting there moving.
Six: Itchy
I must be the itchiest person In the world because I swear I am constantly itchy.
I have found, however, that with Fibromyalgia scratching your own itches is the worst. It literally bruises and damages and hurts.
I try to minimize the hurt from it by scratching not with the tips of my fingers but instead with my knuckles or ankles, but it never seems to satisfy the itch. And my only result is still bruising and tender spots.
Fibromyalgia is an invisible illness that deserves to be brought to light. We need to talk about it some more to make the invisible seen.
Let’s talk about it in the comments to shed some light on this chronic pain condition! Do you experience any of the things mentioned above? Let me know about your experiences and what you do to stay strong.
Interested in learning more about Fibromyalgia? Come check out this post about Experiencing A Different Quality Of Chronic Pain Life Abroad and this post about Reimagining Diet Restrictions In A Foreign Country.
