Something Awesome to Report

iqfgfYou know what my crazy ass symptoms got me? An earlier appointment with my new doc.

After a few friends read yesterday’s post about my worsening symptoms, they encouraged me to call the doctor’s office and see if I could get on a list to be bumped up in case their were cancellations.

I consider myself a moderately smart person, but for some reason this hadn’t even crossed my mind. Part of is that I’m still adjusting to being a professional patient; I’m still learning how to navigate the system. Another part of it is that I’m so focused on these immediate and freaky things happening to my body that I don’t see the whole picture. Thank God for people with a more objective view of this whole thing.

So, this morning I called the doctor’s office directly. The people I talked to were so helpful, I could actually feel a little stress dissipate. I explained that I had a new patient appointment two months out, and asked if they ever put people on a list in case their were cancellations.

That conversation led the medical receptionist to connect me with a triage nurse who asked me about my symptoms and previous diagnoses. I talked about the muscle weakness, the fibromyalgia diagnosis, the Cymbalta, the blah blahbitty blah.  I was on the phone for 30 minutes, maybe spent 5 of those minutes on hold. But both employees were extremely helpful and beyond polite. They were friendly and personable. And the best thing? I have an appointment THIS Friday. Huge relief!

During our chat the nurse actually said to me, “We could squeeze you in tomorrow, but I’m concerned there won’t be enough time for you to talk with the doctor. How about Friday?”

These people care. If I was into hugging total strangers…

 

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Blah, Blah Pain… Blah, Blah Drunk Walking

fibromyalgia pain don't hurtA couple of weeks ago, I called for help finding a new primary doctor. I meant to write about it then, but the day job has been particularly busy lately. Not a complaint, just a fact.  A fact that means I come home, eat dinner, and watch helplessly as the laundry pile steadily takes over the bedroom, the dining room, the living room…

But do you have a female doctor?

Getting a first appointment with a new doctor was more difficult than I had anticipated. Limiting my search to a female doctor that was accepting new patients ironically means driving to the same town that my former primary doctor is moving to. (I didn’t have a problem with my previous primary doctor, by the way. I just figured since I was dropping the rheumatologist, I’d try to stick with doctors in the same health system.)

At first I was bummed about driving out of town for future appointments, until I looked up directions and discovered that Mahomet is only about 20 minutes away from Champaign.

We’re definitely not in Indianapolis anymore! Twenty minutes is nothing for a few doctor appointments. It took me twice that long to drive to the doctor in Sprawl City, U.S.A.

Another bummer: I can’t get in to see the new primary care doctor until the second week of May! There is so much I want to tell her. Right. Now.

But there’s good news too. This doctor’s online ratings are outstanding. Patients give her 5 of 5 stars for listening to patients, explaining her findings, and spending enough time with patients. She received 3 stars in only one area: availability for scheduling appointments. (You don’t say.)

MS, Black Mold, and (It’s Never) Lupus. Oh my!

In the meantime, things have been getting worse for me. The symptoms (or drug side effects? who the fuck knows) are starting to pile on, and I’m afraid if I don’t record them somewhere, I won’t remember them. Some of them are constant; some come and go and come and go.

  • High blood pressure: 137/102 (Good Lawd!)
  • Heart rate: 92 (WTH?)
  • Constantly choking on food and drink. Sometimes until I cry. Sometimes until my gag reflex makes me puke.
  • Weak muscles everywhere!
    • Arms: Become exhausted when shampooing my hair, trying to lift a bath towel, or holding a hairdryer.
    • Legs: Become exhausted after standing, walking, and climbing stairs. When I use the FitDesk my right leg shakes as I push down on the pedal. My right hamstring always hurts.
    • Core: I can’t suck in my gut or pull my knees to my chest.
  • Awkward, “drunk” walking.
  • Right leg sometimes gives out without warning, and I fall on my ass.
  • Migraines with blurred vision, visual aura, numbness and sensation of extreme pressure in one arm (usually the left arm, but sometimes the right), and the inability to read words (I can recognize if a group of letters is a word, but I don’t know what the word is).
  • Sore, tired feet and weak ankles with sharp pain in the first joint of both big toes.
  • Dizziness — sometimes when walking, sometimes while seated.
  • Teeth clenching at night and while walking or climbing stairs.
  • Oversensitive nerves that cause pain and goosebumps.
  • Sore, tight muscles all over, but particularly in the neck and shoulders. (My neck and shoulders have not been relaxed for over a year.)
  • Sloppy handwriting.
  • Insane itching in my left ear. If the nerve is touched, my left foot curls up and my left leg goes spastic.
  • Weird breathing patterns, hiccups, and yawning … all the fucking time.
  • Sharp chest pain when I sneeze.

As I stare at this list, ugh. It’s hard not to think that fibromyalgia was a bullshit diagnosis from a doctor who was just phoning it in. So I recently started researching diseases and conditions that fibromyalgia mimics. Probably not the best idea I ever had. The results are kind of scary, and going down What-If Road without any real information just adds to the stress.

It’s just…I have to wait until May! And even then I’m not guaranteed any answers. It’s hard not to look for clues and try to make some sense of the crazy.

 

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My Experience with Fibromyalgia and Massage

I am employed by a pretty progressive company that lets me work remotely when I need to, has an active office where employees can sign up to use treadmill desks, and invites a massage therapist on-site twice each month, among other nice perks.

Several months ago, I signed up for a massage appointment, but had to cancel at the last minute because I was sick. I decided that today I would get a massage no matter what. First, because I have heard that massage is helpful for some people with firbromyalgia, but also because I wanted to spoil myself a little bit—tomorrow is my 35th birthday!

Sadly, I think it was a waste of money. I am apparently not one of the people whom it helps.

I sat in the massage chair, and the first words out of the therapist’s mouth were, “Oh my goodness, your muscles are tight.”

I sighed and explained to her that I had fibromyalgia.

“Oh, okay,” she said. “That would explain why they don’t feel normal.” She had a few other regulars at her office who had also been diagnosed with it, and told me to let her know if I experienced any pinching or pressure.

I asked her if there was something different she had noticed about fibro patients’ muscles. “Not exactly. The muscles are tense, but there’s also something about the skin. It’s tight too, and just doesn’t move in the same way.” We chatted a little about the dehydrating effects of some medicines and wondered if that could have something to do with it.

The massage itself wasn’t bad, and nothing she did was painful in the moment. But it didn’t feel as great as I had hoped.

For starters, I could not relax in the massage chair. I’d try to force one part of me to relax, and some other part would tense up. That’s nothing new, I can’t even relax in my own bed. And it’s not because of any identifiable mental stressor; it’s just how I am. All. The. Time. At the end of what is supposed to be a refreshing night’s sleep, I wake up to find my neck and shoulders so tight they’re drawn up all the way to my ears. I can’t turn my head far enough to see while I’m shaving under my arms. I “rest” with my jaw clenched. When I sit on the couch, I feel every muscle in my legs contracted. In fact, I don’t know if there’s a single muscle in my body that is ever entirely relaxed, even for a few minutes. I don’t really recall what it feels like to have warm, loose muscles. Even after walking or riding my FitDesk, I’m a knotted up mess.

As I said, the massage itself wasn’t bad. But, here’s the really sad part: I believe it sent me into a flare. Thirty minutes later, at home, I was craving comfort food, feeling low, and becoming more and more exhausted—like I’d been smacked with the flu. The tension in my neck and shoulders was back with a vengeance, and my over all pain rating went from about a 2 to a 7. As the evening wears on, I’m having trouble scooting myself from the living room to the bathroom.

So, safe bet I won’t be doing the massage thing again. I think my already over-stimulated nerves were completely wigged out by all that touch. Everything registers as pain.

 

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An Open Letter to My New Doctor

whoever you turn out to be…

 

open letter to my new doctor

 

Dear New Doctor,

Before I give you the rundown on everything that seems to be wrong with me, I want you to know I have no interest in prescription painkillers.

I had my tonsils out at 24 and was prescribed liquid hydrocodone and acetaminophen post op. It made me puke violently for days. I ended up dehydrated and delirious on the bathroom floor one Sunday morning. I remember calling my parents before they went to church and asking them to pray for me. I thought I was dying.

When I went to the Carle ER in 2014 with a gall stone but couldn’t be scheduled for surgery for some weeks, I was sent home with a prescription for Percocet. I tried taking one-quarter of the prescribed dosage. Uh, nope. Then after my gallbladder was removed, the surgeon prescribed Norco. I took it for a few days—because mother-of-god does being sliced open in four places and having an organ cut out hurt—but by day four I was so miserable I was flushing any pills that were left and cursing the little bastards as they swirled down the drain.

Why do I tell you this now? Because next I’m going to tell you that I was diagnosed with fibromyalgia last October, and I’d like to avoid the mistrustful side-eye if at all possible. Not that anyone seeking help for pain deserves the side-eye, but this isn’t about anyone; it’s about me. It’s been my experience that if you know this about me from the start, I will get better care.

You should also know that I have trust issues. About five months before the doctor at Carle ER discovered I had the aforementioned gallstone,  I went to a Presence Health ER in November 2013 with what I later realized was a gladdbladder attack. (I was pretty new to the area and writhing in pain, so I told my husband to pull up to the first emergency room I saw.) The doctor there gave me a GI cocktail and sent me on my way without ever touching my abdomen or ordering an ultrasound. The hospital paperwork said I had indigestion.

Then there’s the rheumatologist that diagnosed me with firbromyalgia. I’ve already written much about that story, so let’s just say he was a total jerk.

A part of me is so frustrated with doctors that I’ve given up thinking I’ll ever find one that takes what I say at face value. Far form being an attention seeker, I’ve come to loathe scheduling appointments with people in your profession. But I know I need to give you the benefit of the doubt too. So if you promise not to give me side-eye, I promise not to give you side-eye. Deal?

I’m not looking for a quick fix to my problems. I’m not even looking for a definitive answer (though it would be nice if we stumbled across one). What I’m really looking for is someone who’s curious,  likes to solve puzzles, and believes me when I say something hurts or is atypical for me. Someone who doesn’t take my insistence that a particular medicine or course of treatment isn’t helping as a personal assault on her intelligence.

Hopefully,

Emily Suess

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The Problem with Fibro and Fibro Meds

fibromyalgia weight gainI don’t understand my body.

On Friday night, I went to bed about 10:30 PM. I got up for a normal breakfast, caffeine included, but couldn’t keep my eyes open once I had finished eating. So I went back to bed and slept until 3:00 PM.

Yes, 3:00 Pee. Em. That shit ain’t right.

A couple of times Dan checked on me. “Em, you know you’re not going to be able to sleep tonight.”

“I know but I can’t hold my eyelids up,” I replied. It was like I’d dosed myself with Benadryl, except I hadn’t done any such thing. Then I went to bed around midnight last night—a little later than usual, but not an absurd hour—and didn’t have any trouble falling asleep.

What the fuck, body? What do you want from me?!

In other fantastic news, I’ve already put on another 5 pounds since the doctor appointment from hell. That’s right, 5 pounds in 12 days. I know some people think that girls can’t do math (stink eye to the doctor for condescendingly suggesting I see a counselor or dietitian), but I assure you I can.

My basal metabolic rate is currently somewhere around 1670 calories per day. I’d have to eat 500 bonus calories every day to put on one pound a week. I’d have to eat about 1,250 bonus calories EVERY DAY to put on 2.5 pounds in a week. Plus, I’d have to stay in bed every day and do nothing.

Getting on my FitDesk means I’d have to eat the daily BMR allotment of 1,670 calories, the 1,250 daily bonus calories, and then eat back everything I burned while I pedaled. Same goes for any and all other calories I burn working, cooking, walking, cleaning, or whatever all week long. Now, I’m not terribly active due to pain, stiffness, and fear of falling when muscles randomly give out. But still! That means averaging 3,000+ calories a day, minimum.

Having the pounds sneak up on you over the years? That’s easy to do. I take full responsibility for my expanding wasitline up through the end of October 2014. Putting on weight like this? It takes effort. Or perhaps help from—oh, I don’t know—an underachieving thyroid or a new prescription.

I’ve done some web searching for a new primary doctor, and so far no one’s jumping out at me. I will call for assistance selecting a new physician tomorrow, but I’m not exactly optimistic. What if the next one doesn’t work out? What if I have to start all over again with a third doctor?

I miss the days when all I needed a doctor for was an antibiotic script for a sinus infection. “My sinuses are killing me. My snot’s green. Kthxbai.”

 

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