Typical 24 hours with fibromyalgia

Day in the life with fibromyalgia symptoms

Three years ago, my doctor said the F word… that’s right, fibromyalgia. I ignored her. But for the last year I have had constant pain and it is very difficult for me to focus on anything other than finding pain relief or finding a new treatment that can really make a difference. 

I haven’t really been writing about pain. Everyone in my life knows that I have neck pain and headaches. Some people think it’s my back that hurts.

Even though we’ve all had aches and pains in parts of the body, the fact is that anyone who hasn’t experienced uninterrupted widespread pain for weeks, months, or years really has no idea what this experience has been like. 

I felt like writing about it would end up being a whiny writing about boo hoo, poor me, it hurts. Or that the intention behind the writing would be to seek sympathy. I also worry about not knowing how to fully explain my experience in a short and concise way. I was worried that it would get boring, repetitive, and too long to read.

Now I think it’s something I need to do. I think I need to write about physical pain and its emotional cost. 

artwork of woman holding her neck, back view, by fox tales

I thought the easiest way to explain my experience would be to go through the typical 24 hours a day in my life. 

It is 9pm and I am lying on the couch with my fingers pressing against my neck and the base of my skull, trying to recreate the relief treatment I have received. Trying to ease some of the throbbing in my neck and the pounding in my head. Somehow I’ve convinced myself that I have to stay up until 10. When 10 finally arrives, I climb the stairs, get ready for bed, and collapse into what I hope is the most comfortable place in the house. It takes me several minutes and several attempts to reposition myself. Does my neck feel straight and aligned with my spine? If I move slightly to the right, will the throbbing pain in my thigh stop? If I turn around, will it ease the pain in that hip? 

Thanks to the magic of sedatives, I fall asleep in a reasonable amount of time. Unfortunately, part of my illness is the overactivity of my brain. Hello neurons, can you stop firing now please? I don’t get into a deep sleep state, which is where rest and repair occurs. Instead, I slip in and out of a light sleep, never getting enough rest. I wake up several times and reposition my body trying to find the least painful position. 

Finally, around 4 or 5 in the morning, my body has been in bed too long. The pressure of my own body against the mattress is causing me pain that I can no longer tolerate. So I get up, go to the bathroom, stretch a bit, and go back to bed for a few hours. My alarm goes off and I hit the snooze button. And I often sleep past the time I had planned to get up. At 8 am I can usually no longer go to bed. The pain has built up and my body is screaming at me.

woman climbing with hands and arms

But I know upstairs will be better. So I get out of bed to start the day. Every step into the shower is painful because my body feels like it was hit with a mallet the day before. 

By the time I get to the kitchen, most of the stiffness is gone. Often my head hurts less. And I’m left with that general unpleasant feeling you get when you have the flu. As I get ready for work, my body screams at me to pay attention to it. I have sharp pains in many different places.

The drive to work has its own challenges. The sharp stab in my right thigh makes the gas and tear hurt. And checking my blind spots before turning means sending a stabbing pain through my neck to my shoulders. 

When I finally get to work, I get out of the car and into the building, I’m already exhausted and it’s only 8:30 in the morning. 

The workday is a battle between doing what I have to do in terms of work and doing what I have to do for my mind and body. 

Throughout the day I take breaks to stretch, rest, take deep breaths, meditate, hydrate, find a position that is both reasonable to work and not to worsen my pain level. 

I have to remember to be aware of my body position and muscle tension at all times. My head has to be aligned with my spine and facing forward. I cannot look up, down or to the side for a long period of time or I will suffer much later. I have an easel on my desk so I can write without bending over. 

By lunchtime, the ringing in my ears has become louder than comfortable.  It feels like there is an earthquake behind my eyes.  I still feel like I have the flu.  My whole body hurts.  I have muscle spasms in different places.  And suddenly it feels like there is too much stimulus.  I want it dark and quiet. 

drawing of woman holding her jaw

Suddenly my jaw hurts and I realize that I stopped paying attention and was clenching my teeth trying to ignore the rest of my body. My eyes are burning and stinging again, but now they are also watery. And I can’t think of what I was supposed to be doing. All morning I had been forgetting words or misusing words, mainly because my brain was too busy processing pain signals and was in a constant state of stress response.

Lunch is over and it’s time to go back to work. Despite having “slept” for 10 hours the night before, I am struck by a sudden and extreme attack of fatigue. My body just shuts down. My eyelids want to close. I yawn and yawn and I am convinced that I cannot make it to the end of the day. 

If I can find a way to lie down in a dark corner for 15 minutes, my body decides it doesn’t want to cooperate with rest after all. My legs start to feel weird… At first I feel like   something   is crawling inside my legs. Up and down from the feet to the thighs. But then that thing, which I have called the Kremlars, seems to wake up all its friends and the kremlars start running inside my legs, wriggling and moving and causing so much pain and discomfort that   I have   to get up and walk to try. to put the kremlars back to sleep. 

Now is the end of the workday and I bear the pain of driving and go home. Now is the time to “do all things.” Shopping, cooking, cleaning, walking the dog, playing with the kitten, answering text messages from people I believe I think I am ignoring, grading student work, planning lessons, practicing chorus, drawing , write, relax … And do all these things while feeling all that pain that I have already said that I experience. 

It is 9 pm again. And I’m curled up on the couch with a heating pad, a shiatsu machine, chamomile tea, my “blanket,” my TENS (transcutaneous electrical nerve stimulation) machine, crying and trying to make a list of things I’m thankful for. . for: love, friendship, sun, art, music, laughter, mojitos, let my kitty sleep on me, melon, apples, laughing babies, hugs, really cold water, words and much more. 

Despite the aches and pains, despite the fact that my memory becomes unstable, despite my “good days” where the pain is there but it is tolerable … I think the most difficult thing to face is not being able to live my life as I want . Not being able to do all the things I did before without planning rest and recovery time. Not being able to do everything in one day. Not being able to go out with friends when I want to. Disappointing people when I said I would do something. Knowing that this is for life. That I have to make big changes in the way I live. And constantly worrying that I seem like an irresponsible, unreliable, lazy coward who doesn’t keep his commitments.

drawing of woman pulling stomach up

That is a typical day for me. I want to end this piece with something positive and inspiring. I want to be the person that people say “did that despite…” but it’s not like that. I have nothing positive to say about fibromyalgia. All I can do is take care of myself and try to enjoy the little moments like a Sunday morning with a hot cup of tea.

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