What my fibromyalgia feels like.

While not exhaustive, this post is meant for you – the person who is trying to figure out exactly what’s causing you so much pain, the person who is looking for answers after a fibromyalgia diagnosis, the person who is trying to find better ways to care for your body.

I’m going to try to be as thorough as possible and share what has helped me, but different things can help you. Do your research. Consult doctors and wellness professionals but know that you know your body best. Look into patterns. Keep food and activity journals.

Just like with my type 1 diabetes, my fibromyalgia is a game of data. I have specifically engineered my life – what I eat, my activity levels, my exercise, and more – to gain control of my health. You can too (and no, I didn’t just meant to sound like a motivational poster. I just legitimately know that you got this. It’s hard, but you do.)

On my worst days, noises cause me pain. I’ll hear a car horn blaring and it feels like every nerve ending in my body has been set off. I’ll try to tense and release my muscles – my calves, my thighs, my forearms – as a distraction, but it’s like the sound waves are reverberating through my body and there’s nothing I can do to stop them.

On my best days, it’s like I’ve never been sick. The human brain is a wonderful thing and tends not to hold on to pain if we train it to do so. People will ask me how often I have pain flares and I can cheerfully answer, “Oh! Not more than, I dunno, once every few months? It’s not awful.”

In reality, I have pain and inflammation flares once every few weeks. Some are worse than others. Sometimes I’ll just wake up with pain – a lulling ache in my muscles, sharp pains in my joints and the typical fibromyalgia pain pointsย (all of which flare for me) – feeling foggy and lethargic, my brain chemicals doing everything but helping my mood, but my symptoms will level out by midday and I’ll be back to feeling like myself. Sometimes the flare lasts a month or more and I’ll be working from bed most days, willing my joints to stop feeling like they’re on fire, avoiding eating for as long as possible because anything I consume seems like it sends me into further inflammation. Continue reading “What my fibromyalgia feels like.”

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