I’ve read that it can take a couple of months for the iron-deficient anemic to feel all better. I don’t know what that means for me, exactly. I don’t think I’m anemic per se; I think whatever is wrong with my body has depleted me of essential vitamins and minerals.
So what’s my next step? To keep taking the iron.
If everything is magically fixed because of it, hooray! If it’s not, at least I feel alive now. I’m also trying the probiotic thing again. I honestly don’t know if the Align helps, but the GI doc recommended it and I’ve got four weeks of capsules left.
I’m also now officially convinced that the weight I lost over the last few months had nothing to do with my willpower and everything to do with my IBS. Reversed course on the IBS and all the weight came back. But fuck it, weight is not my first priority. It’s not even top ten right now.
So pill roll call. Maybe TMI for some, but mostly posted so my fellow fibromyalgia patients can compare/contrast.
Levothyroxine*, daily AM Tri-sprintec lo*, daily AM Ferrous Sulfate (iron) 325 mg, twice daily with meal Zinc, D3, Magnesium, Calcium combo pill, twice daily with meal Align, daily with lunch Nortriptyline, daily at bedtime Nexium, every other day/as needed (Rx is for every day, but I discovered I could be symptom-free taking it less frequently) Medical marijuana, 1/4 gummy as needed at bedtime
* Prescribed many years before I had any fibro symptoms, but thought I should be thorough.
Welp, 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:
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.
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.