What does it feel like to have fibromyalgia?

I will have several future posts describing the mental/emotional aspects of living with fibromyalgia, so I am only going to focus on the physical part of it here. Unlike many other illnesses with physical symptoms, you cannot see the physical pain for a fibromyalgiac (yes, I just made that word up) since it is in the class of what are known as “invisible illnesses.” So I will try and make it a little bit more visible to those lucky enough to not know what it’s like first-hand.

This is a big move for me because I am a very private person and generally hate to bother others with my problems. But there are too many people like me and not enough awareness regarding what we are facing. So here goes.

Judy Garland, Jack Haley, Ray BolgerFilm Set Wizard Of Oz, The (1939) 0032138
The tin man in the center is me (before I shape-shift into my human form)

My day typically starts off on a tired note, with me feeling very much like the tin man from The Wizard of Oz, muttering for his oil can. While I am still in bed, I make an assessment of the pain level for that day. On a good day, this might be at 2-4 on a scale of 1-10, where 10 is the worst pain. (I remember only one day in recent history that I woke up with almost no pain and felt unimaginably grateful for it.) The stiffness is usually much worse – I can practically hear myself creak as I turn off the alarm and reach for my morning dose of medicine. It takes me at least an hour in the morning to thaw (as I call it) before I can manage to walk ten steps to the bathroom. During this thawing process, invisible aliens from the fifth dimension hook me up to their energy-infusion device. The device sort of has a mind of its own, and you never know how much energy it is going to give you. So it’s kind of a crapshoot. . . and I might add they hardly ever give you “enough.” I would ask the aliens for my money back, but it is a free service, and admittedly I am a hard customer to please!

IV Coffee Drip
The alien Supervisor decides how much energy I am to have today

Now, just for full disclosure, I have never been a morning person. Mornings have always been slow for me. Mornings with fibromyalgia are just even slower. It’s like I used up too much of the energy too early (i.e. the first twenty-something years of my life) from the alien infusion device, and now they’re worried that they will run out for good! So for the rest of my life, I am destined to have a lesser dose. Again, I would complain about their service, but it’s hard to talk to invisible creatures doing invisible things!

Going through the day is like living the life of Link (the protagonist from the Legend of Zelda series of video games). Just like him, I fight my run-off-the-mill battles to get through my day, but I also have to choose my battles with care. I have to gauge my level of energy for that day, and the tasks that need to get completed. I only have so many heart containers on any one day, and when they run out, I am toast (and Ganon laughs). So I need to allocate my energy for all those tasks. This means that sometimes not all of them get done. If I have something big to do, like the days I teach, I keep all other commitments to a minimum to save most of my energy so I can cope with being on my feet for several hours straight. It’s like your body is really a phone that is constantly low on battery. So you have to plan how you use it and recharge it periodically by taking rest breaks. This aspect of dealing with fibromyalgia has probably been the hardest on me. I was always a high-energy, go-getter type of person, and I hated to have to slow down. Over time though, I learned to be the tortoise instead of the hare – because it is the slow and steady that win the race with fibromyalgia!

android_low_battery
I hate to admit just how much I can relate to this!

Aside from my everyday energy level in the heart containers, I also keep some on reserve. This is to be only used in times of desperation, like Link’s magic potion that can save him from utter annihilation. But once used, it is gone and cannot be immediately retrieved. The reserve takes time to build back up again. Also, once you’ve used up your reserve energy, you are really toast! Last time I did that, I slept all day and avoided drinking water so I wouldn’t have to go to the bathroom – because I simply couldn’t rise from the bed. I see a bedpan under a Christmas tree in the not-too-distant future!

Incidentally, that is also pretty close to how a flare-up feels, except then the pain is much worse. During flares, my body feels like it is being invaded by stingrays, who have no qualms about stinging me. I feel shooting pains, typically starting at several different trigger points on my back, and shooting into my arms/hands and legs/feet. This is also combined with a general muscle ache, headache and TMJ pains. While a “normal” day with fibromyalgia feels like living with a never-ending flu, a flare can only be described as an all-body migraine. It often hurts to simply breathe, because the expansion of my diaphragm is painful. I experience nausea from the pain (though I rarely actually throw up) and lose my appetite (which is just as well, because it hurts my jaws to chew). On average, I experience a flare at least once a month, which coincides with my period. They can be more frequent if I am stressed out, or if I overwork myself, or simply sit uncomfortably for too long or perform certain repetitive tasks for too long without taking breaks (like pipetting for instance, and I am a molecular biologist!). As you may imagine, a large part of planning my day simply revolves around avoiding flares.

Late evenings and night times are often spent achy and tired after work. Dealing with even low levels of chronic pain (and I do on my best days) can be exhausting in and of itself. Add to that the fact that I often work myself to the edge of my energy level (even though I know I shouldn’t), and I feel myself reeling as I fall off the cliff. That’s when I know I am done for the day. I consider it a good day if I come home “tired” and not “spent.” Unfortunately, even when I am fatigued, I often have a hard time falling asleep and sleep restlessly when I do. As a catch 22, I notice my symptoms usually worsen after a night of poor sleep, but it is the pain and discomfort that keep me from sleeping well in the first place. So I am grateful for nights when I manage to fall asleep without much struggle and sleep all the way through. Only to start it all over again the next day.

Dark_Link_(The_Adventure_of_Link)
Living with fibromyalgia is like fighting Dark Link with the power glove

All in all, living with fibromyalgia feels like the struggle between Link and his own shadow – your body is trying to beat you, as you are trying to take control. You fight as hard as you can, you duck when you need to, drink the magic potion if you must buy yourself time, but eventually the heart containers go empty, and you are forced to quit the game. BUT… this is a video game, remember?? You never die forever! You agonize over Ganon’s laugh for a little while, and then you come right on back, and keep fighting!

 

Love,

Fibronacci

 

P.S. What I have described here comes only from my own experience. Others’ experience with the disease may vary. Fibromyalgia is a spectrum with those with very mild symptoms (I think I fall into this category) to those who are practically home-bound due to their illness. What does not vary, however, is the struggle against your dark self to reclaim your life. So even if the non-suffering reader has only read my personal story, I hope they felt at least bit more edified regarding what goes on behind the scenes of a person dealing with a chronic pain disorder. 

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3 thoughts on “What does it feel like to have fibromyalgia?

  1. 😂 I once made a battery graphic like that – I think for a post on what traveling entails for me. I came across the spoon theory and the term spoonies only last year. I had been using the term ATP since my teenage to refer to the finite number of ATPs i have and when my ATPs have all been used up, and so on. 😃

    Liked by 1 person

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