I can't remember a time when there wasn't pain or the ominous threat of pain. Some of my earliest memories are of holding my legs, under my knees, and sobbing in pain at only three-years old. I don't remember the doctors appointments when they told my mom it was growing pains and she called bullshit. I do remember years of crying and wondering why I had to have pain but no one else my age had these same pains in their arms and legs. My parents and I knew they weren't growing pains but what do you do when doctors refuse to believe it's something more?
Finally, as a teenager, I believe between 13 and 15 according to medical records, I received a diagnosis: Fibromyalgia. This ungraceful word doesn't seem fitting for this monstrous pain. Maybe on a good day but not at its worst. At its worst, it is a demon, trying to destroy everything good your body and mind have to offer.
What is fibromyalgia? It's hard to explain and I am hesitant to link to an article about fibromyalgia because there aren't really any websites I've found that are comprehensive in explaining the condition. It's considered a neurological disorder that causes pain when there really shouldn't be pain there. Some call it a sleep disorder because patients with fibromyalgia do not have the same sleep patterns as non-fibro patients and often wake up feeling like they were run over by a truck. There are studies that show our nerve fibers are different from others. Risk factors include auto-immune disorders, traumatic injury, genetics and arthritis. It is closely tied in with other conditions such as thyroid disorders (I have Hashimoto's thyroiditis), myofacial syndrome, migraines, chronic fatigue syndrome, TMJ and more. What used to be considered a fake illness by doctors when it was first discovered, it is now overly diagnosed, in my opinion, much like ADHD was in the 90s. It's an easy diagnosis for doctors to give patients when they have mysterious illnesses.
The overall feeling of fibromyalgia is much like having a really bad case of the flu. Horrible body aches at the least and, at most, it feels like every muscle in your body is being squeezed by a vice. Sometimes there is nerve pain which is sharp, throbbing pain, and sometimes dull aching pain. Neuropathy is a common symptom (tingling/numbness in your extremities; I used to have it badly in my face). Headaches are common, as is brain fog which is when you have trouble finding words, focusing and sometimes even thinking. I had it quite badly as a child and always related to older people my grandparents age because we had so many similar conditions.
I managed to get used to the pain pretty early on in my life and while there were some days when I begged for relief, I found ways to cope; likely just retreating into myself or into my active imagination. As I got older I developed more and more symptoms related to fibromyalgia such as myofacial syndrome (gnarly knots upon knots of muscles that cause more pain than the fibromyalgia itself).
I just found this blurb I wrote on my computer in September 2016 when I was having a moderate bout of fibromyalgia:
"It’s a comforting ache that tells me I’m alive. At least that’s what I tell myself when I can’t sleep at night from the pain.
Or when the pain is bad but isn’t as bad as I know it could be. “This is nothing compared to how it could be,” I say to myself, because no one ever really listens to the answer after they ask you how you’re doing. Recently there have been times when it couldn’t be worse. It was as if there was an alien inside my body trying desperately to get out and might tear apart every muscle in my body to do so. Something right out of a horror film except no creature ever emerges. My face contorting in every direction must be a comical sight. Like the acting classes I took when I was 9 and the teacher tells you to stretch out your face as wide as you can and then scrunch it up into a tiny ball.
The pain can put me in a trance-like state. Finding a place that’s higher than my body so that my throbbing limbs can lie like heavy weights on the ground and my mind floats to the top of my head—pushing on my skull like a balloon bouncing against the ceiling—hoping to find a way out."
I have tried every single treatment there is known to man for fibromyalgia. All of the medicines have side effects I can't handle (my body never tolerates medicines of any kind). Fortunately, a couple of years ago I spent a year trying to figure out my triggers by trying the elimination diet and it worked. My pain went from black out level pain to zero pain on most days. I still have flair ups when I exercise or cheat on my diet but my quality of life has improved ten-fold, to say the least.
When I think back to the level 9 pain days (10 being you've already passed out), I can never go back there. It was worse than child birth (which I did naturally; twice) and it was unrelenting. My heart goes out to anyone who experiences that kind of pain on a regular basis. It's unbearable.
I live my life grateful everyday when I don't have pain and am continuing my journey of healing through the mind and spirit so that I can live my best life.
For those of you who suffer from fibromyalgia, I'll write more about the elimination diet in the future as well as other ways of coping and healing. There is hope. I can promise you that.