May is Fibromyalgia Awareness Month!

So, May 12 is the official Fibromyalgia Awareness Day, but May in general is being promoted as Fibromyalgia Awareness Month, so I’m posting now to do my part!

Fibromyalgia is a nasty critter. Whether it’s a syndrome or a disease (or something else entirely) is still up for debate. What is generally agreed upon is that there is a collection of symptoms which tend to occur together, ranging from overall body pain to elevated levels of particular chemicals in patients’ spinal fluid.

Pretty much every patient experiences fibromyalgia a little differently, and many folks have one or more of a collection of other chronic conditions (interstitial cystitis, migraines, IBS, environmental sensitivities, TMJ, etc. Plus, of course, anxiety and depression, because being in long-term pain messes up your brain chemistry). This makes diagnosis tricky, and treatment even trickier.

My own personal situation (partly due to fibro and partly due to comorbid issues) is:

  • Frequent headaches, caused by an inflamed disk in my neck or stress or sinus pressure or any one of a million other things. If left untreated (painkillers and rest), they turn into migraines (complete with vomiting and the need for prescription stuff to make them go away).
  • All-over body pain. Think the aches you get when you have the flu.
  • Increased pain sensitivity. If I’m flared up, a friendly clap on the shoulder is really painful. It’s kind of like when you have a sunburn, only in my tissue rather than on the surface.
  • Sensitivity to acidic beverages and foods. Too much coffee/tea/etc. and too little water, and … let’s say the symptoms are not dissimilar to a UTI, except if I drink enough water it goes away. I’m sensitive to citrus anyway, but even if I weren’t, drinking a glass of orange juice on a day I’m a little dehydrated would be a bad idea.
  • Sensitivity to scents. There are some things that just smell like pain to me. Lavender in particular, but plenty of synthetic scents and flowers do me in too.
  • Food sensitivities. I have a long list of foods I really shouldn’t eat regularly, so I do my best to avoid them day-to-day and then when I’m out with friends or whatever, if I have some, it’s okay. But on the daily? Baaaaad idea.
  • Brain fog. This is very common with fibro patients, and with chronic pain patients in general. It’s like being really sleep-deprived or sick, where your brain feels wrapped in cotton and it’s hard to remember things or multitask. Some days it’s better than others, and I have mostly gotten it under control with medication, but when my fibro flares, it gets bad too.
  • Disturbed sleep. Before I started taking supplements to help, I woke up enough to roll over, look at the clock, realize I could go back to sleep, and then go back to sleep multiple times a night. Like, once or twice an hour on a bad night. I didn’t even know that was weird until a nutritionist I was working with on fibro issues asked me about it. The first night I slept all the way through freaked me out because I literally had never experienced it as a regular thing. (There’s some chicken-and-egg questioning about whether the sleep disturbance is due to the fibro, or the fibro is due to the sleep disturbance. Either way, pain isn’t conducive to good sleep, and lack of sleep is a stress on the body.)
  • Fatigue. Not just from the disturbed sleep, but in general. I aim for nine hours of sleep a night, but usually get more like 7.5 or 8, which is just not enough. I tire out easily, and more things tire me than just physical exertion. It’s really annoying.
  • Stress sensitivity. If I’m working too hard or worrying too much, I’ll get flared up.
  • Joint issues. These are probably unrelated but certainly aren’t helped by my fibro. My knees have been messed up since I hit puberty — my IT band was too tight until I had a lengthening surgery in 2009. Tight IT band = kneecap pulled to the outside = squished cartilage = ow. I also have carpal tunnel syndrome, probably from my first time doing NaNoWriMo (I was also working half a dozen freelance type jobs at the time, most of which involved typing), and an inflamed disk in my neck which gives me awful headaches.
  • Depression and anxiety. Unsurprisingly, being in pain 24/7 is not great for your general mood or outlook on life!

I’m fortunate that I’ve gotten very good treatment over the years, so I know what I need to do to recover from a flare. 9/10 of the time, when I flare, I know what I did to set it off. I have a decent self-care regimen — but, of course, things change and shift over time, and my tolerances all affect each other, so things may be obvious in retrospect but less so in the moment.

Plus, of course, the whole fibro fog thing makes it difficult. Nate has been a huge help, not just because he encourages me to care for myself and also takes care of me when I need it, he has a clear perspective of overall patterns which I have trouble seeing myself.

So. That’s what my experience of fibromyalgia is like. I’m not looking for sympathy or coddling, I am looking to raise awareness. This is how I experience fibro. Other people with fibro have similar experiences to a greater or lesser extent.

Those of you who see me in person, consider for a moment that every time you have seen me, I have been in pain. Not always a lot of pain, but always at least some. This shit is invisible. You can’t know who has it and who doesn’t unless they tell you.

Let’s raise awareness. Too many people go undiagnosed or get the brushoff from doctors. Fibromyalgia is real, and it fuckin’ sucks.

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3 Responses to May is Fibromyalgia Awareness Month!

  1. Very true, every word of this. My experience with over 30 years of living with fibromyalgia is the same, imagine how exhausted pain makes me and you. Fortunately, I have good drs. and good meds, though I am having an argument with Humana now about my sleep drug, Xyrem. They’ve paid for it for 8 years and now I need to appeal for them to continue. Without Xyrem and the restorative sleep it gives me, I am bedridden.

  2. Humana has agreed to pay for Xyrem until 12/31/14. Thank G-d I will stil be receiving this wonderful sleep medicine. Thank you Humana.