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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Thank You for Your Kindness

CaptureA huge and heartfelt thanks to everyone who sent cards, gifts, and get well wishes from Cheryl, her family and me. The thing about these random acts of kindness is that they don’t just impact one person. Everyone who witnesses something good happening around them gets a little pick-me-up too. So your kindness stretches farther than you can even imagine.

If you’d still like to send a note to Cheryl, or you’d like to send another one, feel free! The original project centered around Valentine’s Day and Random Acts of Kindness Week 2015, but your notes of encouragement can arrive any time.

As you can probably imagine, recovering from a stroke while being separated from family and friends can be a slow and frustrating process.

Send a get well wish by snail mail

Cheryl Gregory
Room #: Warrick 312
C/O Serenity – St. Mary’s
1116 Millis Ave
Boonville, IN 47601

Send an online greeting to be printed & delivered by hospital volunteers

St. Mary’s – Send a Patient Card to Cheryl Gregory – Room #: Warrick 312

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Christie Clinic Responds to My Open Letter

Christie Clinic responds to fibromyalgia patient's complaint.For those of you following along at home—god, I always wanted to write that—I have a few updates to make regarding my Open Letter to Christie Clinic.

First, one day after I published the post and tweeted it to Christie Clinic, the clinic left a comment:

Emily,

We were sorry to hear about your recent appointment. We would like the opportunity to improve the situation. At Christie Clinic, we believe in having a doctor who takes the time to listen and understand. Members from our leadership team would like to discuss your recent situation in more detail with you. At your convenience on Monday, can you please call us and speak with our patient liaison, 366-8034, about your experience.

Thank you for your comments. They will be shared with our management team and we look forward to speaking with you about your recent appointment.

I had mixed feelings when I originally saw it. On the one hand, it’s just your standard social media damage control response. It’s sufficiently polite and vague, but it puts the onus back on the patient. “Can you please call us.”

Ugh, no thanks. I spent a lot of time composing my letter. Don’t make me start over. Don’t ask me to listen to promises that you’ll tell your manager about the situation.

Eventually, though, my skepticism gave way and I began to see the comment as evidence that someone at Christie Clinic noticed. That was something. I still wasn’t going to call a patient liaison though. Because, hello, I have fibromyalgia and frequent insomnia and two jobs and my meds cause dry mouth and uncontrollable coughing and yawning any time I speak.

Seriously, I’d rather carry a stray cat’s stool sample to the vet in a perforated bag than endure the scripted pain of a customer service call.

So I didn’t call, and then a funny thing happened. On Tuesday, the clinic’s Chief Operating Officer left me a voice mail, which I returned the next morning. The most surprising part of the call wasn’t that he apologized for the problem, offered to assist me if he could, or explained to me how the clinic was addressing the problem—though he did do all those things. The most surprising part was that he read both of my posts and spoke about the problem IN CONTEXT.

When does that ever happen? I mean the reason most people loathe customer service calls (okay, the reason I loathe customers service calls) is because I have to repeat the same information twenty times, futilely trying to bring someone who couldn’t give a rat’s ass about my problems up to speed. Not this time.

So while the appointment with the doctor was the worst doctor-patient interaction I’d ever experienced, the follow-up by the clinic’s administration was one of the best complaint resolution interactions I’d ever experienced.

For those wondering about the outcome of all this, I did ask the COO to keep me informed. Of course, anything HR-related is confidential, but I suppose there’s some potential for clinic policy to be amended as a result too. Mostly I just hope this event reminds the rest of you out there not to let the health care system swallow you whole.

Complain to family and friends to get the rage out if you need to, but always ALWAYS complain to someone with the ability to do something about it.

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