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.
Limited range of motion (particularly in my neck and shoulders)
Gait problems
Falling
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
IBS-D
IBS-C
Migraines
Chronic headaches
Vitamin D deficiency
Malnutrition
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)
GERD
Fatigue
Weight gain
Nausea
TMJ
Anxiety
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.
I’ve been off the Gabapentin for a few days now, and am feeling much better. And by much better, I mean I feel as shitty as I did before the drug, but not as shitty as I felt while taking it or for the first 48 hours after quitting it. In hindsight, I’m realizing that the drug made me pretty irritable. It also increased my pain and tortured me in my sleep, so I guess the irritability was kind of a foregone conclusion.
I’m both mad at myself for taking it (knowing I’m super sensitive to medicine) but also proud of myself for being willing to try it and trusting myself to know that it was not for me and quitting it before it wreaked more havoc on my body and mind.
Sleep
So, back to that book. It has been very helpful—more helpful than any of my doctors—in showing me why my body is doing what it’s doing. I believe that’s because it’s written by a doctor who has fibro and has made understanding it and treating it her whole career.
It’s taught me to break down the management of the condition into ordered steps, giving me a plan (I love a good plan; I’m a planner, baby). My first focus is restoring my body’s ability to “rest and digest” by getting better sleep. Because my stress response is always on, I have to accept that I can’t get restorative sleep without medication. I have to make it happen.
The author gives a chart for meds and supplements to aid with relaxation and deep sleep. Gabapentin is on it, as it turns out, but that’s a no-go for me. Fortunately, things I already take are on it: medical marijuana and nortriptyline. I have already discovered my magic combo for sleeping well: 10 mg nortriptyline (originally prescribed for my IBS, so BONUS!) and 1/4 of a medical cannabis gummy before bed (which also reduces my anxiety and pain).
Once I’m getting consistent sleep, I’ll be ready to move on to the next step of the treatment plan.
Magnesium
I have been encouraged by friends to soak in Epsom salts (magnesium sulfate) to help alleviate soreness and neuropathy, particularly in my feet and legs. So on Monday I took a bath and dumped in about a cup and half of Dr Teal’s foot soak. Turns out we had some stashed in the back of the linen closet.
It settled the nerves in my legs by like a bajillion times, plus the warm water soak made it possible for me to stretch out my hamstrings. However, I couldn’t get myself out of the bathtub. Combine perpetually weak muscles with heat and relaxation and you get bones wrapped in unset Jell-O. Dan and I devised a plan to get me out, but not before I started panicking that I was stuck in the tub forever.
Dr. Liptan, the author of the book, said some of her patients found transdermal magnesium lotions and oils gave them relief from restless legs when they applied it at bedtime. (Another part of getting good sleep is treating the things that keep us fibromyalgia patients awake. Things like RLS.) I don’t have any transdermal magnesium yet, but I plan to give this magnesium lotion a try. I doubt it will be as effective as the warm bath, but until I can safely get in and out of the tub it seems like it’s worth a try.
Outlook
Overall, I’m feeling positive about the future and even imagining a time where I am slightly less disabled than I am now. Hopefully, I can get my doctor on board with the book’s plan tomorrow. But even if I can’t, I don’t feel like I’m completely dependent on her for my treatment and care.
It’s going to be trial and error. I know that. But I feel way less overwhelmed by the complexity of my condition. That alone helps me sleep better at night.
