This is my fibromyalgia. There are many like it, but this one is mine.
Fibromyalgia is typically defined as “a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and tenderness in localized areas.” I have found this definition particularly useless when trying to explain my life to friends and family, so this is my attempt to compile an exhaustive list of what my life is like with fibro*.
I was diagnosed by a rheumatologist** about five months after my first complaints of muscle weakness and generalized, on-going pain. On a questionnaire, I answered questions about my sleep. On the same form, I was asked to shade in the parts on the human body that hurt.
“I see you shaded in your entire body, front and back,” the doctor said.
And then he pressed on seemingly random areas of my body. The pain was so intense my knees buckled and I cried out in the exam room. That was the day I learned about trigger points—the day I realized I could actually hurt worse. The day someone induced my first honest-to-god fibromyalgia flare up.
What follows is a list of my symptoms. Some of them may more accurately be described as side effects from medicines I take, but I generally just lump them all in for two reasons: 1) I wouldn’t be taking the medicines if not for fibromyalgia, and 2) even my doctors can’t distinguish what’s primary and what’s secondary and what’s side effect.
- Feeling faint
- Elevated heart rate
- Muscle weakness
- Muscle cramps
- Muscle knots (trigger points)
- Muscles aches
- Muscle stiffness
- Limited range of motion (particularly in my neck and shoulders)
- Gait problems
- Widespread nerve pain
- Joint pain
- Swelling in hands and feet
- Burning sensations in hands, feet, and legs
- Itching sensations
- Cold and numb sensations on face and nose
- Chronic headaches
- Vitamin D deficiency
- Dry mouth
- Dry eyes
- Abnormal breathing (catching my breath with no apparent cause)
- Hiccups after eating or bending over
- High blood pressure that fluctuates with pain levels
- Hypersensitivity to light, sound, smells, touch, tastes
- Waking ranndomly to pounding heart, increased respiration (like my fight-or-flight kicked into overdrive for no other reason than it wanted to)
- Weight gain
- Low body temperature (usually around 97, at 99 I feel feverish)
- Sensitivity to medications
- Reduced (non-existent, if I’m honest) exercise tolerance
- Brain fog (crappy short-term memory, inability to recall words, inability to multi-task without getting completely derailed)
- Temperature sensitivity (both cold and hot)
Some of these things are constant, and some of them come and go. Obviously some have a greater impact on my disability than others.
I’m probably leaving stuff out because I can’t brain.
Some of these are mitigated by drugs (the IBS-D, for example). The only thing we have been able to stop long-term so far is the IBS-D. God, that’s depressing.
Anyway, I think Dr. Ginerva Liptan describes the mechanism of fibromyalgia pretty well in her book, The Fibro Manual.
Got questions? Ask away.
*Not everyone with a fibromyalgia diagnosis experiences the same things. In fact, though there are many similarities among patients, I’d say no two cases are exactly alike.
**As I’ve written in prior posts, my relationship with the acceptance of this diagnosis is best described as on-again, off-again.