Fibromyalgia

Something’s Squeezing Me, but from the Inside

symptom-checker

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?”

“No.”

“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?”

“Yeah.”

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 the results I posted in the above screenshot.

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.

Fibromyalgia

It Isn’t Fibromyalgia After All

visit-summary

Dan and I were leaving the clinic after my doctor’s appointment Friday. I was hobbling with my left arm hooked around his elbow and my right hand gripping my cane. I was so exhausted, I wanted to stop and take a nap halfway to the car. The only thing that kept me going was my desire to get out of the razor-sharp wind.

“Did you hear her?” I asked. “She said ‘this is not fibro.’ I kept it together in there but I wanted to cry.”

***

The past week has been dreadful for me. I’d-rather-do-aeorbics-in-a-pool-of-peanut-butter level dreadful. I’d spent so much time not doing anything in order to save a few spoons, that I didn’t realize I couldn’t do anything, even if I wanted to.

Dan had to bring me clothes, help me rinse the shampoo out of my hair before my appointment, and search the house for my comb. (The comb was in the dining room, where it had been since we unpacked after holiday travels in December. It’s always wash and air dry for me.)

After every chore, I’d have to stop a few minutes and rest.

Wrap a towel around my head. Sit on the toilet with my eyes closed. Brush my teeth. Sit on my bed. Get dressed. Sit on the couch and try breathing a little deeper. Put my shoes on.

By the time we were on the interstate, I was dizzy and willing away a panic attack. (For the record, most times the mental anxiety doesn’t come until after my body starts freaking out.)

***

“Your pulse is 120.”

“That seems high, doesn’t it?” Dan and the CNA both agreed with me. I was sitting upright, but had just walked down the hallway seconds earlier. (I’ve been saying for months that my autonomic processes are screwy. I was appropriately concerned, but not surprised.)

Next, she put the cuff around my arm and in a few seconds announced that my blood pressure was 174 over 110.

I gasped. “Ohmygod. That is really freaking high—the highest I’ve ever had—but I guess it explains why I am so dizzy.” I was also seeing floaters, but I didn’t bring it up. I was focused on willing myself not to pass out.

“Yeah, it’s pretty high,” she agreed. “Earlier this month it was better, though.” She pointed to my records on the monitor, referring to the day Dan pushed me in the wheelchair to my sleep consult. “I’m going to come back in 15 minutes and take it again, okay?”

When she came back, it was down to 132/90, and I was feeling more stable.

***

The doctor eventually came in, and the three of us discussed the issues that had been of most concern to me recently: the inability to move my leg, my worsening weakness, how I walked like I had mad cow disease, and my inability to stand up on my own—at first after a bath, but now also after showering with a shower chair.

“What about getting up off the floor?” she asked.

I looked at the sterile floor of the exam room. “There’s no flippin’ way,” I said. Please don’t make me prove it. The thought of trying to get myself up off the floor…

She took my word for it, but asked if she could watch me walk. The three of us went into the hallway, and I began my slow hobble down the hallway with my cane in hand.

“Are you going to fall?” she asked?

“I think I’m OK for now with the cane.” I wasn’t really confident, but I needed her to get a decent picture of what was going on with me.

As I made my way back to them, my leg muscles were utterly exhausted after only about 20 steps. I asked her about ruling out MS.

***

Next, Dr. S asked me if I’d sit on the exam table. I shakily climbed the single step and tried to lift my butt up with my core muscles while my palms were planted on the cushioned part of the table. It was a struggle of epic proportions.

When I was finally seated, knees bent and legs hanging over the edge, she started a physical examination that included testing the strength of different muscle groups by having me push and pull against her.

Next, she started hammering reflexes. When she tapped my left knee, my leg swung wildly out and then back in. My heel slammed against the metal base of the exam table. It was loud and echo-y and sounded like I’d just lost the game of the year and was kicking lockers in a self-loathing rage.

“I’m sorry!”

The three of us had a good chuckle, and she said not to worry or try to minimize any of my reflexes. She finished up with her little hammer.

Then the weirdest thing happened. She grabbed my left foot, moved it up and down quickly a couple of times, and then held it in a flexed position. My foot went spastic, pulsing in the same repetitive motion for several seconds until she let go. It happened with my right foot too, though not as pronounced.

Clonus.

***

I’ve been reading up on MS and watching YouTube videos for weeks, so when it happened I already knew it had a name. I didn’t know, however, that I had this sign. It felt really weird, voluntary muscles acting involuntarily.

She said I could step down. “This stuff can’t be fibromyalgia,” Dan said.

The doctor agreed. “The muscle weakness, clonus, gait abnormailities, and the inability to move your leg that you reported last month—this isn’t fibro.”

You guys, joy washed over me in a wave from my head to my toes when she said that. Then she added, “If you talk to others with MS, you’ll probably hear a similar story. They’ll tell you that for ten years they dealt with inexplicable symptoms while doctors looked at them like they were crazy.”

I nodded my head in agreement. 2005. The vision loss. The pregnancy test. Doctor I-Don’t-Think-It’s-a-Stroke.

***

She ordered MRIs of my brain and cervical spine, and recommended that I keep any appointments I have. She believes the sleep study will still be helpful. Plus I now have two neurologist appointments on the books, one with INI in Peoria and one with someone local.

“They’re far enough out you can cancel if one or the other isn’t needed, but you don’t want to be waiting to get back on the books.”

***

I’m convinced it’s MS, though there are some other possibilities. However, getting that diagnosis could still be a long, tough road. I’m trying to prepare myself for inconclusive MRIs, just in case. I am the queen of negative test results.

If you’re interested, here’s a quick explanation of how MS is diagnosed and what a challenge it can be.

Fibromyalgia

How I Got My Panties in a Wad

hanes-underwearNew game plan: get my primary doctor to order an MRI (or get me in the door of a doctor who can and will).

Getting into the MS Center does not seem likely at this point. That’s primarily because as a sick person, I don’t have the energy and resources I need to force the issue. My insurance lets me see whatever doctors I want, but getting my records to Peoria? I might as well try to send my test results to Mars.

I still work full time. There are spoons left for nothing else. And my physical abilities continue to decline.

I don’t totally give up, but I do give up a little. You know what I mean?

***

I was feeling slightly better there for a couple of days, and I had almost decided that ruling out MS was just going to waste me time and money. But then I got slammed with another flare up of symptoms.

Last night I took a shower, but got two toes stuck in the leg hole of my underwear. I couldn’t get my leg pushed through the opening and pull them up and I couldn’t free my toes.

I also couldn’t lift my leg out of the underwear to reverse course and start over. Defeated, I just stood with one hand on the shower door and one hand on my tangled up Hanes and started crying. I was about 30 seconds from collapsing due to exhaustion when Dan rescued me from my self-pity.

***

My vertigo came back with a vengeance, despite the fact that I haven’t taken (or needed) a Nexium in 15 days. So, Nexium apparently isn’t my problem. Still don’t have any plans to continue taking it unless my GERD rears its ugly head again.

***

My sleep studies are scheduled to start at the end of March. I’m confident they’ll find nothing, because no tests ever find anything.

Fibromyalgia

Fibromyalgia Update: Iron, Sleep Study, Nexium

fibromyalgia quote.PNG

I haven’t been feeling well lately. I know, right? You are so surprised.

Thought I’d follow up with my progress in regards to the iron supplements and my fibromyalgia. Which is a pretty easy task, because there is no more progress to report. I’m still taking the supplements, and the burning in my legs and feet is less frequent. But the initial shot of energy and hope I had during that first week—hope that this was what was wrong with me—has all but completely fizzled.

I was anticipating a call from the sleep specialist this week to schedule the sleep study, but it didn’t happen. (The sleep study requires pre-auth from my insurance company, so I’m guessing there’s some negligence or outright denial of coverage on the part of my insurance provider.)

Whatever. I’m too drained to check on it. It’ll either happen or it won’t.

Nothing is happening as far as my getting into the MS Center at Illinois Neurological Institute either. My last move was to clarify whether my primary doctor’s office had simply put in a referral to my insurance (which is not required) or whether they had communicated with INI to start transferring my records to them (which is required).

Of course, my primary doctor’s office hasn’t responded to that question, which I asked nearly two weeks ago. I’m feeling more and more like my doctor and the nurse practitioner there just want me to wait for another scary episode and go to emergency. Proactive healthcare in this country is a fucking farce. It essentially consists of flu shots and colonoscopies after age 50.

If there’s one bright spot, it’s that I haven’t taken Nexium in 11 days, because I haven’t needed it. Doing without it hasn’t completely stopped my dizziness, but it’s lower. I feel like falling isn’t as likely right now. So there’s that.

 

Fibromyalgia

Reprieve?

Thought I’d jot this down. Feeling a little better always seems noteworthy.

I walked back to the office to grab my laptop this morning. (It’s Friday and I have no scheduled meetings, so I’m working entirely from the couch today.) As I was walking down the hallway, I noticed my vertigo was better than it had been in weeks, maybe months. I wasn’t strong, and my movements weren’t fluid, but I didn’t have to grab the walls to keep myself from falling.

I immediately tried isolating the reason for the change, so I could repeat the improvement or keep the momentum going. “What did I do differently yesterday?” I asked Dan.

“You had banana instead of pineapple in your smoothie? You went to bed early?”

Yeah. I took my shower early, crashed on the bed like I always do (for at least 30 minutes post-shower) and I never got back up. I even slept all night with the light on. I just couldn’t muster the will to get out of bed and turn it off. Just before 6 a.m. I woke up. Not because I was done sleeping, but because I was so damn hot I couldn’t sleep.

Spending half the day in bed doesn’t exactly seem like a recipe for good health. I dunno.

Probably just me doing what I always do—falling back on the habit of thinking that I have the ability to fix my health problems. That I can do something to change what’s going on, which presumes I did something to cause it in the first place.

The greater likelihood is that I’m getting to the other side of a months-long flare.

Whatever. I’ll take it.

 

Fibromyalgia

More Medical Tests: Could I Have Sleep Apnea?

sleep-studyThree days ago, I was so close to canceling my sleep consult appointment. Like finger-on-the-green-call-icon close.

I generally face anxiety for three days prior to any scheduled outing. It’s not that I have genuine phobias about people or doctors or medical facilities. It’s just that it’s so hard. I mean, have we talked about how I get dizzy trying to brush my teeth yet? So, yeah. I get worked up about errand and appointment struggles days before I actually have to do them.

I didn’t cancel the appointment though—despite fretting it would be another dead end and waste of spoons—and I’m mostly glad I didn’t.

For one thing, when we got to the parking garage elevators, there were two hospital wheelchairs waiting. I was almost giddy; thought I’d have to make it all the way to the main lobby before landing one. But there was a red one and a blue one right in front of me. The wheelchair version of Take a Penny, Leave a Penny.

“Dan, will you push me in one of these?”

“Hop in!”

It was actually kind of fun. Like back in the day when Dan would take the doors off his Jeep and drive us in circles around the roundabout at the end of our street.

Instead of my usual doc visit blood pressure (in the area of 140/90-something), I was a reasonably stressed 126/88.

***

The nurse practitioner I saw today is recommending me for the on-site sleep study. I don’t know when that will happen yet, because insurance and pre-authorization and blah, blah, blah. But she was optimistic the first study could happen within the next month or so.

Parts of the Sleep Study

  • Initial Consult (Did that today.)
  • Sleep Study 1: Stay overnight hooked up to wires to determine if I have apnea and or RLS/limb movement.
  • Sleep Study 2: Happens if Study 1 determines I have apnea. They’ll fit me for a CPAP and document whether it’s helping.
  • Follow-up Consult

***

 My fatigue has gone from a 10 to about an 8—which is still shitty, but any improvement is welcome when you’re chronic—and that’s improved my mood. I even had a positive thought: What if I do have sleep apnea and actually getting oxygen through my airways at night fixes everything?

Time will tell, I guess.

Fibromyalgia

Watching Shit Burn

house-on-fire
Not My House. Just Thought It Looked Dramatic.

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.