I had to bring the walker back out today. It’s frustrating, but kind of expected. I’ve taken another step towards coming of the dexamethasone—down from one milligram a day to a half milligram a day.
If you Google “dexamethasone taper” and hit the patient forums that pop up in the results, you’ll see it’s pretty common for the taper to make people feel like hell.
I keep finding out how unexceptional I am in terms of side effects.
Congratulations, me. And all of this right before I start my maintenance chemo tomorrow morning.
If there’s one thing I’ve learned since February, it’s that I’m not allowed to get completely over one stinky hell before stepping barefoot into a freshly steaming new one.
Anyway, my body is just one continuous muscle spasm right now, and it has been for a couple of days. I’ve tried the cyclobenzaprine I have left over, hot and cold packs, Icy Hot, bed rest, hot tea, meditation. Probably more stuff I can’t remember. All pretty much worthless for this particular problem. My medical cannabis gummies get me relaxed enough to sleep at night, but they are really, really dehydrating.
That’s something I’d like to point out, now that I’ve brought up the topic—marijuana’s great, but it’s not perfect. People who claim it is probably haven’t taken it for brain cancer.
So anyway, I’ve regressed to the point where Dan has to pretty much do everything for me again. These little setbacks don’t last forever, but they are so frustrating. As it turns out, I actually don’t like being waited on constantly or asking for help with ridiculously small things.
“Could you get me a Gatorade? And pour it in a glass? With ice? And a straw?’
Dan doesn’t mind. In fact, he’s made me Kraft Macaroni & Cheese three days straight. He even went out to buy the janky cheap stuff when we already had Kraft Deluxe in the pantry.
What can I say? My cravings are very specific these days. I want straight macaroni, not elbow. And I want neon orange cheese dust, not runny cheese product from a metallic pouch.
Sunday night was…weird. I went to bed early because I was feeling…weird.
Dan came to check on me. “What’s up. You doing okay?”
“Well, what’s wrong?”
“I don’t know. I just feel really strange. Like something’s squeezing me, but from the inside. Everything’s heavy. I feel like I can’t breathe.”
Dan tried to push me for clarification, but I had nothing. The sensations were new, and I couldn’t determine whether I was having some kind of panic attack or my worst flare up to date.
Am I panicking? Or am I just so weak I my muscles won’t expand enough for a solid breath?
I could tell he wasn’t sure how to help. “I’ve just been lying here trying to decide if this is worthy of an ER visit, but I don’t figure there’s much point in going if I can’t even explain what’s going on, you know?”
Spoonies learn quickly that ER visits are borderline pointless. Unless you can show the doctor a gunshot wound or… Well, it’s pretty easy to talk yourself out of going. They’re expensive as hell, and the doctor you end up with is a total crap shoot.
Like the one who gave me Mylanta and sent me home when I had a gallstone he didn’t bother to check for. That waste of my time cost me thousands of dollars and several more months of excruciating pain.
Ever since my doctor’s appointment on Friday, I’ve been getting weaker and weaker. And it’s not like I had all kinds of strength to start with. In fact, during the strength test part of the visit, she asked me to grab her fingers and squeeze them as hard as I could. I gripped the index and middle fingers of each of her hands and gave it everything I had.
I was thinking to myself, based on my perceived level of exertion, that she was going to say uncle. I pinched up my face and waited for her to tell me to let go.
Instead, she said, “No, as hard as you can.”
When I wake up in the mornings, my spasms are worse. I yawn repeatedly, and with each yawn my entire body tenses up from head to toe. The back of my right ear and earlobe are numb. My forearms and hands are mostly numb, but painfully so.
Whatever that means. How is it possible to be in pain and numb at the same time?
Talking triggers yawns, which triggers more head-to-toe spasms. Getting up from the couch—when I can manage to stand up—triggers head-to-toe spams too. I have to wait for the muscle contractions to stop.
Imagine you’re angry and making a fist. And you’re so angry that your arm and fist shakes in tight, tremor-like contractions until you let go of the fist.
That’s what I’m calling a spasm. Only it’s all over my body. And I can’t just think let go, and my body magically lets go. It’ll let go when it damn well feels like it, and there’s not a blasted thing I can do about it.
There’s no question the reality of my situation is starting to sink in. If you type the visit diagnosis items from Friday’s appointment (weakness, abnormal gait, clonus, restless leg) into my symptom checker app, you get these results:
Knowing what I do about my own body, I’m 99.9% certain I’m dealing with multiple sclerosis. But I can’t completely ignore that other possibility. And I’m already conditioned to fear non-answers. If the MRIs (just got them set up this morning and they are scheduled for Thursday) don’t show MS lesions or anything, what then?
Thank God for medical cannabis in Illinois. Whether Sunday night’s breathing troubles were directly related to my physical condition and spasms or my overactive, anxious mind, one quarter of a gummy helped.
In a few minutes, I felt the muscles around my chest and stomach let go. I could breathe. And then I feel asleep.
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.
“Just so you know, Dan, I read that quitting Gabapentin can be rough. Withdrawal symptoms include suicidal thoughts. So, keep an eye on me.” He paused in the doorway on his way to the kitchen.
“Okay, I got your back,” Dan said. “Need anything while I’m up?”
“Yeah, could you bring me a knife?”
The number of nights I’ve had bad dreams in the last nine days is exactly equal to the number of times I’ve taken Gabapentin before bed. At first, the bad dreams were pretty typical. But in the wee hours on Saturday morning, I woke up from a bad dream and couldn’t move anything. Not my arms, not my legs, not my fingers, not my toes.
The paralysis only lasted a few short seconds, but that didn’t really minimize how scary it was for me. Much scarier than the bad dream I’d just had. (My parents were throwing me a birthday party, but no one came and my parents had looks of pity on their faces. I know, but trust me: It was brutal for someone who wants to be honest about her struggles but also not be pitied.)
Sleep does not come naturally to me anymore, probably because fibromyalgia is characterized by an always-on stress response. If something I do or some medicine I take further impedes my body’s ability to get restorative rest, I drop it fast.
While Dan was helping me walk down the hallway that afternoon, I announced, “I’m not taking Gabapentin anymore.” I didn’t take it before bed Saturday evening.
Sunday morning, about 2 am, I had what I’m calling a night terror. I’m assuming as a result of Gabapentin withdrawal.
I dreamed that I was awaking from sleep in the guest room because inanimate objects in my home were attacking me. A lamp. The shower head. A paper towel.
I screamed and screamed and screamed for Dan to come help me. But it was a nightmare, so naturally I couldn’t scream loud enough.
I kicked and flailed and screamed some more, until Dan finally came into the room to comfort me.
Only he wasn’t actually there; I had begun another dream. The Inception-level dream within a dream shit was already a few layers deep at that point, and the more I tried to wake myself up, the further down the rabbit hole I fell.
I did finally wake up for real, sweating and clenching my chest. I was breathing, but it felt like I was suffocating.
I closed my eyes; I had only been asleep for two hours and was physically exhausted. Two hours was no where near enough rest for the night. But as soon as my eyelids fell, the panic swallowed me again. I opened my eyes, and reminded myself that it was just a bad dream. My eyelids got heavy again; the panic swallowed me again.
That’s about enough of that.
I got up and went to the master bedroom to find Boomer snoring soundly on my side of the bed.
“Something wrong?” Dan asked. My stumbling into walls had apparently roused him from sleep.
“Just another bad dream. It was so…”
But before I could complete the sentence Dan was snoring again. I curled up in the top left corner of the bed and closed my eyes…only to be swallowed by the panic. Again.
I got up and went to the living room, turned on an accent lamp, played Farm Heroes Saga to keep myself awake, and vowed to wait it out.
Being chronically sick is scary. Of all the ways I react in response to fibromyalgia, fear is the thing that takes up the most space in my brain and the thing I talk about the least.
When a flare begins, I fear it won’t end this time.
I fear falling because I know I can’t get up on my own.
I am terrified of addiction to drugs like Gabapentin (even after taking it for just nine days!) and am scared of the inevitable withdrawal symptoms I will face when I decide to quit taking it.
I am scared of drug side effects.
I get scared that my fibro fog will lead to big mistakes with severe consequences.
I worry that I’ll collect more symptoms. I worry that those symptoms are a sign that something else is wrong. I worry that my health care providers will miss it—or worse, won’t care. I worry that I’m misdiagnosed. I’m scared that a misdiagnosis would mean I’m not treating something bad, and that the longer I go without treating the real thing the less treatable I become.
I fear that spending to much time being afraid will make me sicker.
Dan handed me the knife, and I started cutting a gummy into quarters. I’m off of Gabapentin and using small doses of medical cannabis to keep the proverbial elephant off my chest and sleep without being terrorized while my body adjusts.
Medical marijuana might be the only thing I don’t fear right now. I want to hug it.