Sometimes, I just feel like $%$&!!
I was forty years old before I realized that everyone’s skin didn’t hurt all the time.
My skin hurt as a child, but I never included it in any symptoms because I didn’t know a life without this pain. As far back as I can remember, it hurt.
Maybe “hurts” isn’t the correct term. You know how you get goosebumps, and your skin feels like it just heightened all of its sensations? My skin feels like that all the time, without goosebumps. When I do get goosebumps, it’s almost unbearable, and the only thing that seems to calm it down is a hot bath. It’s as if the nerves in my skin are on their last nerve and all the skin is angry. One little poke with your index finger feels like a knife cut. Then the muscles start to hurt, a really sore hurt, like I just did 1000 squats, or I lifted heavy weights for hours. Except, I didn’t.
I used to constantly complain about a stomachache, because my siblings would complain when their stomachs were upset, so I knew that was not a normal feeling. If my nose was running, I knew I was getting sick because it didn’t happen every day. I only told my parents about the new symptoms, not the constant ones. And no one ever asked about my skin or talked about their skin, so why would I mention anything? I just thought skin hurting was normal.
I went to the doctor all the time, and never once did I say that my skin hurt, until I had employees who had similar symptoms. I knew these employees had autoimmune issues too and it was such a relief to know that someone else’s skin hurt. Is a big storm coming? Yes, my skin REALLY hurts. Am I getting a fever? For sure, because my skin knows first. Even my food allergies typically start on the skin, with hives and rashes.
My family has no idea what I’m talking about because they don’t experience this weirdness. And I’m not mad at them for not understanding, I’m mostly jealous. I wish this persistent pain didn’t exist. I wish I didn’t wince in pain on hot, humid days, when I brush up against the kitchen counter. One time, I dropped a pillow on my thigh, and it may as well have sliced my leg down the middle. A PILLOW. It was so painful it took my breath away. Again, not happening during my everyday level 3 pain, but still not something you want to experience.
And THAT is just one of my symptoms that I have daily. I hate that I’m never at 100%. I hate that a good day, is level 3. I could run a marathon at a level 3. I could climb Mount Everest at a level 3. And some people go to the hospital at level 3.
The skin pain and the muscular pain are persistent, but I’m not dying from it. Thats what the third, and best I might add, round of rheumatologists said to me. “I think it’s fibromyalgia (ten years later). You’ll be in some pretty terrible pain for the rest of your life, but it won’t kill you.” Oh, awesome. I mean, really awesome. Who wouldn’t want to be in terrible pain every day?
Sometimes, it’s bad, bad, but I have all these orders to fulfill. I have to literally focus all of my efforts on pain while I wish and hope I get finished at a decent hour so I can crash and lay on my heating pad. And did I mention, I couldn’t even stand up straight baking because it was too painful? Baking hunched over is just not very efficient. This isn’t every day; this is level 7+ pain days.
But I rarely talk about the daily stuff. No one hears my complaints until it’s up to a level 7, and I think, “This is it. This must be what is happening when celebrities got to the hospital for ‘exhaustion’.” But, honestly, when do we go to the hospital? How bad do you have to feel to go? Because waiting in the ER sounds too exhausting, also germs, no thanks.
I try all the things that the internet and my doctors tell me to do, but is it all just woo woo at this point? I feel better after a massage, and maybe the next day too, but then it’s back. And make sure you don’t work out too much or too long or too strenuously because it might put you in a flare. But also, don’t just sit, because that makes you sore too. And reduce stress. Sure. At least the rheumatologist laughed when she told me that one and said, “I know it’s impossible.”
But then one day, the impossible happens, and you wake up and know that if you just laced up those shoes, you could run a marathon. And everything is glorious. So, I look forward to those days.
