Isn’t That Stigma Something?

social-stigmaFor most of yesterday, I sat at my computer wondering why I hurt so bad. I figured that if I was going to have a bad day this week, it would have been Monday (my first day back to work in three weeks).

Nope. Because nothing health-related can ever make sense in my world, the flare had to visit me Tuesday. By the time the clouds had gathered, I was an 8 out of 10 on the pain scale. I saw it coming, but there was stuff to do.

By the time work was over, my body was involuntarily L-shaped. I had been so focused on work that I couldn’t unbend myself or get out of my chair at quitting time. I was sad, achy, stiff, cold, and anxiously jumping to worst-case scenarios in no time.

What if this time it gets so bad I have to stop working for good? What will happen to us?

Then I remembered the cannabis gummies sitting on my nightstand, and I took one-fourth of one.


I recently read that chronic pain patients don’t take pain meds correctly. Instead of staying on top of their pain and keeping it muffled and bearable, they wait until their pain is so obnoxious they can’t function to seek relief.

There are likely a few reasons for this, ranging from “I am tougher than this pain, I’ll keep pushing” to “I don’t have enough medicine to handle my pain, I’ve got to ration this shit in case things get worse” to “I’m really tired of my government, my doctor, and my pharmacist treating me like a junkie.”


As the cannabis made me comfy, I decided I’m going try not to label people that need relief from pain as anything other than people that need relief from pain.

Me included.


Let Me Introduce You to My Fibromyalgia

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.

fibromyalgia-trigger-pointsAnd 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.

  • Dizziness
  • 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
  • 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.


All Good Things Must Come to an End, All Bad Things Can Just Continue as Usual

mehWelp, on Monday I go back to work. My medically induced vacation hasn’t been as helpful as I’d hoped. But if I’m obligated to find a bright side, I guess I’m glad I didn’t have to pretend to be OK for three weeks.

The amount of pretending and ignoring it takes to get through an 8-hour day when you’re struggling to lift a fork to your mouth or open a bottle of Gatorade is hard to explain. It’s crippling, it’s depressing, and it’s scary.


It was my worst flare up to date that prompted me to go back to my doctor on September 29 and spend a tearful 40 minutes confronting my disability.

In that first full week off, I learned that gabapentin is not a drug that’s going to get me back on my feet. The night terrors and lost sleep I experienced on that junk instead set me back weeks, maybe months.

I quit taking it after waking from one of many nightmares to find I couldn’t move my limbs for a few moments. Immediately after I stopped taking it, I went from being scared the drug was going to permanently break my brain to worrying that my doctor was going to react negatively to my “non-compliance.”


Without much to keep the flare from snowballing, I spent the second week in more pain than usual. I honestly don’t remember much about it, except that when I went back to the doctor for a med check she was OK with me stopping the gabapentin and wanted to me to up my nortriptyline dosage to 20 mg at bedtime. Getting restorative sleep needed to be the priority.


Holy shit, have I ever slept since that appointment. Here’s the sleep I logged using FibroMapp for the first 7 days at 20 mg:

Saturday 10/14: 10 hours
Sunday 10/15: 18 hours
Monday 10/16: 9 hours
Tuesday 10/17: 11 hours
Wednesday 10/18: 10 hours
Thursday 10/20: 7 hours

The longest sleeps include daytime naps at moments when I just couldn’t keep my eyes open another second—in case you were wondering. On all 7 days, I spent my waking hours in bed, getting up only to go to the bathroom or take a shower or grab a Gatorade from the kitchen.

Dan cooked all my meals, washed and folded all the laundry, took care of the pets, shopped, rescued me from the bathtub, vacuumed, washed all the dishes, ran errands, picked up my prescriptions, met with the gutter guy, and plunged the toilets when our drains backed up. He even helped me get my shirt over my head because my arms were so weak I couldn’t lift them over my head.


So here I am at the end of my third week off of work, a little bummed and a lot miffed that I haven’t made any progress. I used up PTO and short-term disability and have nothing at all to show for it except a new walking cane, more medical bills, and a half-used bottle of gabapentin.


Sometimes Dependent on Others Woman

jessica-jones.jpgMy mom tells this story about me. When I was a toddler, I was terrified of thunderstorms. Inevitably, I’d end up in my parents’ bedroom seeking comfort any time the thunder and lightning came.

My memories of this time are pretty fuzzy. But I do recall being afraid of thunder and sometimes falling asleep on the floor beside their bed. I guess pulling the blankets up over my head in my own room was only so consoling.

Eventually my parents decided I had to grow up. So one night during a thunderstorm, they closed their bedroom door and let me cry it out. After wailing through the Longest Storm Ever™, I crashed. They found me asleep on the hallway floor the next morning.

Mom says after that night I never left my room or cried through a storm again.


I’m no psychologist, but I like to think that the night I was left to cry it out alone was the night my independent streak was fully actualized. It’s my superhero origin story, and my superpower is: I don’t fucking need you!

Whether I couldn’t or should’t expect comfort from someone else didn’t matter. What mattered was that being okay with scary shit was on me, and I wasn’t going to let myself down.

But like I said, I’m no psychologist. And it’s probably just something I tell myself when my independent streak goes from superpower to character flaw—you know, to let myself off the hook.

It’s not my fault I don’t ask for help anymore. My life experiences made me this way.


Only now am I beginning to overcome the independent streak I let grow unchecked for the last 30+ years. I think I let it take over because I could. I was healthy and capable and got lots of stuff done.

With fibromyalgia, though, I have had to squash the independent beast within. Like smooshing down the trash in a garbage can, I sometimes have to plant a foot on top of the heap and step on it with my full weight to make room for a different superhero: Sometimes Dependent on Others Woman.


Sleep Study, Iron Testing, So Long Gabapentin

sleep-memeGetting out of bed is so hard. But I did it—for the second day in a row—and finally got to sit down with my primary care physician today. I’d hoped to write something better today, but the best I can do is keep everyone apprised of the basics:

  • I told my doctor that I had stopped taking Gabapentin and explained the nightmares that were trashing my already-trashy sleep. She made a note on my chart and said, “I’d have stopped taking that too.” She assured me I wasn’t imagining things and that although it was rare, other patients had reported nightmares and night terrors too.
  • At her suggestion, I’m going to try upping the nortriptyline again to 20 mg at bedtime to see if I can get over the slump of daytime sedation it causes. The hope is that my body will adjust. Because I don’t seem to suffer worse side effects, I’m cool with giving it another go. It could help with the fibro pain.
  • Since sleep problems keep coming up, she’s referred me to a sleep doctor. I have to have an initial consult first, but it seems likely that I’ll be completing a sleep study. “You know they torture people by depriving them of sleep, right?” she said. “If nothing else, we need to get you sleeping again or your health will never improve.”
  • Related to the sleep, she ordered tests for my iron levels and a couple of other things. I honestly can’t remember what the other stuff is right now. Since I’ve been struggling with burning, tingling, and crawling sensations in my feet and legs, low iron could be playing a role. We were surprised to look through my records and see that my iron hadn’t been tested yet.

All in all, it was a good visit. Her suggestions fell in step with The Fibro Manual that I’ve been reading. That is, prioritizing sleep, checking out iron levels, ruling out or treating things like restless leg or apnea that could be keeping me from getting the sleep I need.


Doctor Appointment Postponed

charlie_brown_pain_scaleI went to the doctor’s office this morning, but didn’t get to see my doctor. Her first appointment went way over, so a nurse asked me whether I wanted to wait for at least another hour (because there was also a patient still ahead of me) or reschedule.

I opted to reschedule. It’s a struggle to get out of the house, but she listens to her patients and sometimes things run long. I can’t fault her for that.

Still being bound up in jeans and a bra in a waiting room chair isn’t just uncomfortable, it’s a recipe for even harder times. There was a last-minute cancellation for tomorrow morning, so I’ll try again in the morning.


After I published yesterday’s almost optimistic post, the weather here turned brutal. Wind. Rain. Cold. Damp. I’ve gone from pain to more pain to numbness. And even though the sun’s out now, the damage has been done.

This is how I know things are really bad: my brain is like “I’m just going to turn the pain signals off and we’re going to go numb for a while, mkay?”

Okay, brain.


I’ll try to write and entertain another day then.


A Plan for Getting Better: The Fibro Manual

Taking a few blog minutes to assess my health today. I’ve got a follow-up appointment with my PCP tomorrow morning, and I started reading The Fibro Manual: A Complete Fibromyalgia Treatment Guide for You and Your Doctor earlier in the week. (It has been a huge help so far. Thanks to my friend Jeff for sending it my way.)

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.


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.


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.


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.