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.
Last night I had all the anxiety. All of it.
Will I have to go to the ER before I get my appointment at the MS Center? How will they get my records before I’m an actual patient? Will they arrive and get lost because no one knows who I am or why they’re being sent?
Who are you kidding, self? No one is even working on your records.
Should I keep my sleep consult appointment on Wednesday? I already have to lean on the counter just to brush my teeth. I don’t want to walk from the parking garage to the doctor’s office. I’m not sure I can do it, whether I want to or not.
I feel like I can’t breathe.
What if it is MS?
What if it’s not MS?
What if I don’t ever get better?
Last night Dan was working on a little project for me: removing, washing, drying, and replacing the covers we keep on our living room furniture to protect the upholstery from Boomer and Izzy.
Putting them back on required moving the couch and love seat. At one point he bumped the lamp on the sofa table, knocking it to the floor. The shade came off, the bulb broke. And then… the broken light bulb started smoking.
“I need you to unplug the lamp!” Dan said.
“OK!” I was sitting right next to the power strip where it was plugged in, but I couldn’t reach it. I made efforts to get out of my seat. I grunted. I rocked myself forward trying to use momentum to get me off the couch, knowing that once I was upright, I’d still have to turn 90 degrees and recover my balance. Then I’d have to bend over and, using my weak arms, try to pull the lamp cord out of the outlet.
“Fuck. Nevermind, I’ll get it.”
I had only managed to scoot myself closer to the edge of my seat. I wasn’t anywhere close to standing when Dan realized it would be faster for him to get up off the floor and walk over to the outlet.
Crisis averted. Nothing caught on fire. But I was smacked by the depressing reality that I can’t do anything and I certainly can’t do anything quickly.
I’m officially sick and a burden.
My parents have a garden tub, so while we were visiting them at Christmas I decided I was going to take full advantage. Traveling can be so stressful. That’s one of the reasons we stopped at Walgreen’s the day before leaving Urbana; I wanted to pick up a bag of Dr. Teal’s Epsom salts to soothe my achy muscles.
I was in the tub for about 15 minutes when I was overcome with fatigue. The bath had worked to soothe the muscles in my legs a little too well. And by that I mean I couldn’t get myself out of the tub.
I drained the water completely and tried to stand, but I couldn’t even get my feet planted under me, let alone stand on them. Next I tried the grab bar. Maybe a combination of standing and pulling with my arms would do the trick.
And being stuck in the bathtub was getting me all panicky, which would only undo the relaxation I was trying to achieve. I grabbed my cell phone and texted Dan, who was reading in the living room.
That wasn’t the first time I’d tried to take a bath and been unable to get out of the damn thing myself. A couple of months earlier, it had happened at home.
We have a terrible old bathroom with no grab bars and shower doors that are decent enough to keep me steady, but no way is there any chance in hell they’d hold up to me trying to pull myself up with them.
Dan tried a couple of different methods. “Here, grab my hands and I’ll pull.”
“That’s not going to work.” I started tearing up and my chin quivered and got pocked with pout dimples. I tried to take deep breaths to ward of panic and hyperventilation, but I was so drained and fatigued I couldn’t even suck in a big breath. I was hunched over, without even the strength to straighten my spine.
“There’s a way to do this,” I said, “I just need to think how we can get me out of here without breaking me or you, or tearing out the shower doors.”
After a few minutes, I had it. Dan stood behind me in the tub, hooked his arms under my pits, and lifted. Once my legs were under me, I could stand on them. (Though my knees had to be locked in hyperextension to keep me from crumpling.)
Before I got in the bath at Mom and Dad’s, I told Dan, “Keep your phone handy. I might need a rescue crane.”
I already knew that people who have multiple sclerosis (MS) need to avoid the heat. So—you guessed it—I went Googling. Back in the day, doctors would actually use a hot bath test to diagnose MS! Holy shit!
“In the 19th and early 20th centuries, the effects of heat on people with MS were used in the diagnosis of the condition. The hot bath test involved lying in a bath of warm water. If this caused or worsened neurological symptoms, it was taken as evidence that the person had multiple sclerosis.”
Most of what I’ve read says that the heat from the bath causes a temporary worsening of symptoms, but someone in a forum mentioned the debilitating effects could become permanent. Um, even if it’s a gross exaggeration of the facts, no more baths for me.
This heat intolerance thing may also explain why I can just barely function after a shower and have to lie down on my bed for at least 30 minutes
I woke up at 5:12 a.m. today with the uncontrollable urge to stretch my limbs. I stretched, and as usual my muscles all contracted at once, like a collective spasm. It’s frustrating and not at all therapeutic like you’d think a wake-up stretch should be.
But this is normal for me now, and most of the time it leads to a charlie horse style cramp at the base of my neck. That clenching is always followed by a pulsing and whooshing of blood in my head that gives me an intense headache. I’ve never actually timed it, but if I had to guess the headache lasts anywhere between 5 and 15 seconds. When the pulsing calms, the headache leaves too.
That lovely little experience is then followed by what I call leg vibrations. My legs look fine, but inside it feels like they’re buzzing or shaking very rapidly. If I could draw, my artistic representation of the experience would look blurry, like a tine on a tuning fork that’s just been whacked.
After several minutes the vibrations quit. This morning, for instance, my left leg wrapped up its shenanigans just a minute or so earlier than my right leg. While I waited for the odd sensations to dissipate, I had the thought that I should log these things in my Fibro Mapp app.
So I did.
While the vibrations are weird and it’s annoying that they sometimes wake me up from sleep, they don’t hurt. That has made them a back-burner symptom for me. But since I’ve been Googling everything related to multiple sclerosis lately, I was like “Why not see if this could be connected too?”
Leg vibrations are totally a thing.
MS isn’t the only explanation, of course. And I do wonder if my nortriptyline prescription could be a culprit. Even though I’m on the lowest possible dose, it can cause some MS-like symptoms according to Physician’s Desk Reference. That alone isn’t enough for me to bail on a potential MRI though, because, plenty of my nerve symptoms predate my starting nortriptyline in July.
I’m not sure of anything. Basically just thinking out loud here, because I got notice from my primary doctor’s office yesterday that she has already sent the referral for me to go to the MS Center at Illinois Neurological Institute in Peoria. Consequently, I’ve kicked up my overthinking habit a notch or two as I wonder if the hour-and-a-half drive one way and all the subsequent visits and hassles will be worth spending my precious, precious spoons.
Yes, I realize that I’ve pondered a pretty lengthy list of possible diseases and conditions in the past 24 months or so, including rheumatoid arthritis, Sjorgren’s, lupus, myasthenia gravis, celiac disease, small bowel bacteria overgrowth, POTS (I still feel like autonomic dysfunction is a thing for me, I have just stopped tracking my pulse for my own sanity), and others I can’t remember.
And, yes, now I’m going on about multiple sclerosis, even though I already have a fibro diagnosis.
It’s okay if you’re rolling your eyes at me right now. I’m rolling my eyes at myself.
Each time a medical professional or friend or relative says something to suggest I might be a hypochondriac, I count to five and tell myself: You don’t know what it’s like to be them; they don’t know what it’s like to be you. Then I move on to the next thing and ask, “But have we ruled out this thing yet?”
Unless you’re chronically sick too, you probably have no idea just how reasonable it is to question or even believe you have something it turns out you don’t have. I mean, with so much symptom overlap among all of these named autoimmune illnesses…
Ugh. It’s not like I’m researching all this stuff for the thrill of it. I’m doing it because no one else will.
Inevitably someone (usually a medical professional) will try to get me to accept that I have fibromyalgia and just move on. I try, I promise I do. But the acceptance never lasts long, and it doesn’t help that others with fibromyalgia say to me, “What the hell?! I have never experienced that symptom.”
For me, fibromyalgia is an undiagnosis*.
At first, it was a helpful way for me to talk about a handful of consistent symptoms without having to spell them all out every time I saw a new doctor. But now I tend to view it as a diagnostic crutch.
When I talk about things that are happening to me, they are dismissed as things that “happen sometimes” with fibromyalgia.
On a related note, why aren’t more doctors curious? All the ones I’ve dealt with—even the “good” ones—pretend, at least to some degree, that they’ve got it all sorted out.
*Operative words here are “for me.” I believe people when they say they hurt and are fatigued; but I don’t think fibro explains enough of my symptoms. Most days I suspect it’s a misdiagnosis or that something else is happening alongside it.