By Jorie –
When I first heard the words, “I am diagnosing you with fibromyalgia,” I was in disbelief. My face said it all.
I’d just turned 25 the previous month, had a whole host of other chronic illnesses I was lugging around, and was not ready to add another one to the ever-growing laundry list. Nonetheless, there I sat on the examining table, legs dangling in front of me, that familiar pain shooting down my back and into my hip. Fibromyalgia. This unique, distinctive pain at last had a name of its own. I would come to know it well.
The verdict made plenty of sense. I’d already researched the ins and outs of fibromyalgia. I knew what it entailed. I even knew more than a handful of fellow spoonies living with it. The thing is, fibromyalgia is another one of those creeping comorbid monsters, waiting to pounce on you as you turn the corner. By this point, I already had chronic migraines, rheumatoid arthritis, Chiari malformation, and POTS—so why not toss fibromyalgia into the melting pot, too? I had all the symptoms. (Eventually, about two months later, I’d receive my Ehlers Danlos Syndrome diagnosis as well).
Fibromyalgia is a complicated and not fully understood condition. It is known that patients with fibromyalgia have a total of 18 points all over their body that are tender when pressed, and this is one of the diagnostic criteria as well. While it is not considered a progressive disease, it can completely disable patients.
Everyone feels fibromyalgia differently, which is why it is such a frustrating and difficult diagnosis. Most patients experience nerve pain, muscle pain, fatigue, brain fog, and more. Some can function almost normally, and others have an extremely poor quality of life. I’m somewhere in the middle where the slogan is “fake it til you make it.”
The Comorbidity of Fibromyalgia & Migraine
As I always like to say, migraine loves company. Migraine and fibromyalgia are very commonly comorbid to each other. The root cause of fibromyalgia is unknown and there is no cure, much like migraine as well.
In the general population, fibromyalgia is diagnosed in about 5 in every 100 people. When the demographic is narrowed to those living with migraine, the stats are 17 in 100. For chronic migraineurs, it increases even more: 35 in 100 people. Furthermore, over half of all fibromyalgia patients report a migraine diagnosis. How crazy is that?
As true with migraine, women are more impacted by fibromyalgia than men. The typical range is usually between the ages of 30 and 50, as well as children and the elderly. U.S. government statistics show that as many as 90% of fibromyalgia cases are diagnosed in females. Men still do get fibromyalgia, but studies have shown that they experience it vastly differently from females, in that their cases can be milder (but, of course, not always).
Many migraine symptoms actually crossover with fibromyalgia as well. Photophobia, fatigue, nausea, tension, insomnia, anxiety, and more. In fact, one can be a symptom of the other. Fibromyalgia patients can experience migraine as part of a flare-up and vice versa.
According to Migraine Treatment Centers of America, both migraine and fibromyalgia have in common that both of them possibly are problems with the brain’s pain processing center.
“It is believed that both conditions are caused by excitation of the nervous system or an over-response to stimuli. Stress is usually cited as a trigger for both migraine and fibromyalgia attacks.”
Additionally, some experts have theorized that many chronic pain disorders, similar to fibromyalgia and migraine, are due to a defect in the regulation of the neurotransmitters serotonin and epinephrine.
However, fortunately enough, several of the medications that successfully treat one disorder, treats the other one. Examples of this are Neurontin (aka Gabapentin) as both pain management for fibromyalgia and prophylactic treatment for migraine, as well as many SSRIs, which normally treat depression, that can target and relieve pain. Magnesium also commonly treats both conditions, as patients often show low levels of magnesium in both conditions.
My Daily Reality with Fibromyalgia & Migraine
My quality of life, since being diagnosed with fibromyalgia, has steadily decreased. It wasn’t something unexpected, but it definitely leaves a lot to be hoped for. My aspirations have shrunk in size since my diagnosis of fibromyalgia, but my determination is still the same. My goals are often things like “get out of bed before noon” or “take a shower” or “eat a good meal.” My bigger goals are “make it into the office for a day” or “go to all my appointments” or “have a fun day out.” All of these things are my tiny victories. When I’m able to do them, I’m super proud of myself. Always celebrate your tiny victories.
About three months after my fibromyalgia diagnosis, I started having days upon days of absolutely excruciating pain, fatigue that made my body feel like it was weighed down by bricks, and brain fog that made it impossible for me to even watch an old favorite Disney movie on Netflix. By all circumstances, I was not functioning.
I laid on the couch indefinitely, moaning in pain, and using my heating pads until I nearly burnt myself (the dog often works well for that purpose, too). I barely ate, took tizanidine and tramadol like candy, only got up to use the bathroom, and this was my life for about a week. Not even a life: merely an existence. I remember my mom and fiancé both being stiff with worry, trying to figure out what they could do for me, which unfortunately, was not much other than “being there.”
Almost every day for a couple weeks, I woke up feeling like I had the flu—full blown flu—every horrible symptom of the flu, I had it. One day during that period of time, on a particularly terrible day, a friend was in town for some appointments and offered to drive me to the urgent care to get my “flu” checked out. I walked in, face mask on, and told the receptionist I was certain that I had the flu. I’m telling you, if you want to be seen quickly at a walk in clinic, just say you have the flu—they take you back immediately.
So there I sat on the examining table with that pesky mask held close to my face, inhaling and exhaling to the point of fogging my glasses. I counted the divots in the ceiling tiles. I felt like death. I wanted to collapse from the fatigue. My pain was through the roof, my whole body aching and tender, and a migraine cherry to top it all off, like some disgusting dessert that I definitely didn’t order.
The doctor finally made it in and we talked extensively about my symptoms and my plethora of diagnoses as well. It turned out that his wife has severe fibromyalgia, so the more we talked, the more he said… “you seem like you may be in a bad flare-up. But I’m going to test you anyway.” And so commenced the tests. The ever-uncomfortable swabs for two types of flu, plus strep throat. Does anyone ever get used to that? I don’t think so.
And so I waited. And I breathed. And I told myself, “I’m going to be okay.” Or rather, convincing myself. I just wanted to feel better. Maybe saying it would bring it into existence.
When the doctor returned and told me all my tests were negative, I was shocked. I thought, “what the hell is wrong with me, then?”
And so the conversation began, as he explained how fibromyalgia works. He put the scientific research into layman’s terms for my brain-fogged self. I am fortunate a thousand times over that I got a doctor who was actually very knowledgeable about fibromyalgia, who lived with someone suffering with fibromyalgia, and could read my symptoms on the spot.
“You’re in a severe flare-up,” he said. “There’s not much I can do for you, but I advise you to rest as much as you can, drink plenty of water, limit your sugar intake, and try to do some light exercises such as yoga or a walking to keep yourself limber.” I was already taking Neurontin to control the pain, which my family doctor upped after this incident, but otherwise, I was sent on my way.
Compared to other typical 25 year olds, my life probably seems extremely closed-in, repetitive, and super crazy boring. And I won’t lie—it is, quite a lot of the time. But I haven’t given up on life. I do everything in my power to give my life meaning. Just because I can’t work full-time anymore, or I have to stay in bed nearly all day some days, doesn’t mean I’ve lost my purpose. My purpose has just shifted a bit.
My new lifestyle that I’ve adapted to over the last few years hasn’t been an easy transition, especially mentally. I don’t want to accept that I can’t do the things I should be able to do and enjoy at my age. I don’t want to accept that my usable time on any certain day is cut in half compared to that of other people in their 20’s. I think constantly, “this isn’t fair, what did I do to deserve this, why was I chosen to live in such pain and agony?”
In these moments I have to stop and evaluate my current situation. Breathe in. Breathe out. And breathe some more. Because my life really isn’t bad. This proverbial jail cell I’ve placed myself in is purely my own mental prison, and while I am limited in the things I can do, I’m not totally disabled. Living with the chronic pain that fibromyalgia instills is perpetually frustrating, but, you know… I’m okay. In the middle of immense pain, I say to myself, “I’m okay. This too shall pass. Find the blessing in disguise.”
Life is pretty beautiful, if you stop to smell the roses every now and then. And if you breathe, look up to the sky, see the beauty of the clouds and the sunlight, bask in the earth’s radiance, smell it and dance upon the ground, watch the world turn in front of you, see the sun set, or watch the sun rise, feel the fresh air on your face and in your lungs—you realize that illness doesn’t define you. Illness is simply a part of you..
Fibromyalgia. Well, it’s just a word. More than that, it’s given me yet another reason to advocate for chronic illness patients. And… for myself.