My normal existing is you on a sick day, or hungover — that’s how I live.B
The struggle with Fibromyalgia is that everyday it’s something new. My everyday is a constant battle on an all-terrain track; full of dangers, no idea where I’m going or what I’ll hit next. I’m in an infinity roundabout of symptoms. Every obstacle is calculated to avoid risk but the outcome is never predictable no matter how hard I try. The variables don’t matter.
There are over 100 symptoms of Fibromyalgia including:
Chronic muscle pain, muscle spasms, or tightness
Chronic severe fatigue and decreased energy
Insomnia or waking up feeling just as tired as when you went to sleep
Stiffness upon waking or after staying in one position for too long
Difficulty remembering, concentrating, and performing simple mental tasks (“fibro fog”)
Abdominal pain, bloating, nausea, and constipation with no reportable gastrointestinal issue
Chronic tension or migraine headaches
Sensitivity to one or more of the following: odors, noise, bright lights, medications, certain foods, and cold
Severe anxiety and depression
Numbness or tingling in the face, arms, hands, legs, or feet
A feeling of swelling (without actual swelling) in the hands and feet
Jaw and facial tenderness
Costochondritis, inflammation of the cartilage that connects a rib to the breastbone
It keeps going. They get even better. Like, allodynia, a heightened sensitivity to touch, which results in pain from things that normally would not cause discomfort, like wearing clothes.
For me, I struggle with pain and fatigue Every. Single. Day. That’s not just a little headache or I’m tired. That’s full body aches like you have the flu. That’s fatigue like you haven’t slept in 48 hours. That’s everyday. That’s my constant baseline. My normal existing is you on a sick day. Or hungover. That’s how I live.
For reference, I’m in my late twenties, I am petite, and not overweight. I look perfectly healthy.
But, the other symptoms are the hardest part. They barrel through my body like it’s a pinball machine; constantly changing location and severity. Often in sharp, fast pains; so fast I can barely catch my breath before it’s moved on. Then, the pain lasts for hours at a time; for example, my legs often feel like they have 100lb weights strapped to them, weighing me down with each step.
While running basic errands, it hits me like a ton of bricks that turn to beads of sweat, and then I’m overheating; so hard I have to “take a break,” because buying more than just toilet paper at Target is too fucking hard. 8 hours of work at my full time job felt like running a marathon (I had to stop working).
The list goes on and on. I’ve resigned to just saying, “I don’t feel good, thanks for asking,” instead of trying to explain one of the myriad of ills I’m feeling at the moment.
Speaking of moments, that’s all I can think about.
Like, right now, in this moment of pain I exist in, in bed trying to distract myself from “it” (the pain).
I’m always thinking ahead, and calculating, “How am I going to react? What’s going to flare (that’s how we describe ‘when shit hits the fan’)? How long will the transit take from X to Z location? Once I arrive at Z location, will I need to leave at any point? How much energy do I have to use when I get there?”
Everything is a fucking calculation because there’s a bug in my database.
Stand up every 45 minutes to reduce pain level by 5%. Walk at least 4000 steps to reduce pain level by 10%. Rest after 20 mins of walking. Be in bed for at least 9 hours to function at ~25% the next day.
Recharge. Rest. Self care.
I try to predict what I need to function.
But there’s no pattern in my code anymore.
Everything is unknown.
At work, I consider telling a colleague more about why I was out “sick”. She asked, curiously, if I had figured out what made me sick. I responded playfully, “sometimes I just get sick.” But the part of me that craves support and empathy begged me to tell the truth. The thing about Fibromyalgia is that it is not like other things. The thing about Fibromyalgia is that no one knows WHAT IT IS.
Fibromyalgia pain comes more from the brain and spinal cord than from areas of the body in which someone may experience peripheral pain. The condition is believed to be associated with disturbances in how the brain processes pain and other sensory information. — Dr Daniel Clauw, American Pain Society americanpainsociety.org
The most common response is a twice-removed acknowledgment — they have an (often female) acquaintance or their “mom’s friend” had that. The conversation stops. It’s not like MS or Parkinson’s or Rheumatoid Arthritis or the goddamn flu. People know what those are. People get it. You’re sick.
Fibromyalgia is in a class of its own, and it’s different for everyone.
My elevator speech usually goes a little something like this, “I have a central nervous system disorder that causes widespread chronic pain and fatigue.” I try to make it sound bad, because it is bad.
Because I want people to pay attention.
I want people to know about Fibromyalgia and what it does; the power it holds to destroy lives while lurking in the shadows. It masquerades as other diseases so we’re put through a gamut of tests that our insurance won’t cover. It turns my friends and family into skeptics. It makes people think (and makes me feel) like I’m a liar, faker, and lazy. It tries to take my job, my relationships, my love and passion for life.
Fibromyalgia is an asshole and I want everyone to know:
I’m not sick. I have Fibromyalgia.