My Doctor Took Money from Big Pharma

big-pharma-doctorThe rash on my neck came back yesterday. It’s one of a handful of fibromyalgia symptoms or  drug reactions (or whatever) that I haven’t discussed much on the blog, and it’s one of the things I had planned to discuss with the doctor formerly known as my rheumatologist on Tuesday. But, for whatever reason, it disappeared right before my appointment. Kind of like how your car stops making that clanking noise right when you roll in the Car-X parking lot. Anyway, since the itchy red mess came back after the doctor made me angry, I’m going to assume the rash is just stressed-induced.

But there’s something else I wanted to write about today.

I linked to Tuesday’s post on my Facebook page and in my fibro fighters group, and there was some discussion that generally boiled down to two things: looking for a new doctor is a good decision and others on Cymbalta have experienced weight gain on the drug. But my then my sister-in-law mentioned this clip from John Oliver and wondered whether Doctor Interruption might be in Big Pharm’s pocket.

Disgusting, huh?

After watching the clip, I went to openpaymentsdata.cms.gov and looked up up what money Doctor Interruption had been paid from pharmaceutical companies. It only shows data for September 2013 through December 2013 at the moment (before I started seeing him), but in that time he was paid a total of $3,168.35 from Pfizer and AbbVie. Now, neither of those manufacture the generic Cymbalta I take, but who knows what the 2014 data has to say?

Share that link with your friends and family. Knowledge is power.

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Does Cymbalta cause weight gain?

Does Cymbalta Cause Weight Gain?…The world may never know.

I’m not quite sure what it means for me to say that today I feel depressed, considering a couple months back I was diagnosed with “depressive disorder, not elsewhere classified.” But after an appointment with my rheumatologist today, depressed seems the best way to describe my state. As a rule, I typically feel pretty goddamn normal. That is, until some asshole reduces me to angry tears.

Today’s appointment was scheduled as a two-month checkup to make sure my Cymbalta was still working and my fibromyalgia pain was bearable. The nurse weighed me and took my BP, then asked how I was feeling before the rheumatologist came in.

“Well, I’ve been better. I don’t know if you noticed, but my weight shot up 12 pounds since the last time I was here.” He clicked a few keys on the laptop and pulled up my records.

“Oh, yeah. I do see that now.”

“Well, I’ve never been terribly skinny, and I’ve been known to put on a few pounds over the years. But that’s abnormal for me. You can see it on my chart. I’m not sure if it’s a side-effect or part of the fibro or what. I wanted to ask about it.”

The nurse recommended that I bring it up with the doctor. He hadn’t heard that Cymbalta could cause weight gain and thought maybe the rheumatologist would want to check my thyroid levels again just to make sure I was within range. Sounded like a plan to me; the rheumatologist came in a few minutes later to ask me how I felt.” He was scribbling shit on my chart already.

“I’m doing mostly…”

“You’re doing good?” he interrupted. “Mood OK? Pain OK?”

“I think so, yes, I replied. But I have a few questions for you.”

“Sure,” he said. So I brought up the weight thing, and told him about my recent, uncharacteristic gain.

“Oh well, I’ve heard two or three pounds maybe, but never 10 or 12 on Cymbalta. You need to exercise more.”

“I’ve been exercising more and I bought a pedal desk for working on the comp…”

“That’s good.” He scribbled something else. “Stop eating food with calories.”

“…”

I had no response for that. Stop eating food with calories? Really? Immediately I saw the old women from that hilarious Esurance commercial flash through my mind. “That’s not how this works,” the one says. “That’s not how any of this works.” Maybe it was just that he was a non-native English speaker.

I attempted to add some explanation. “You see, it’s not normal for me. That full signal I used to get after a meal? That doesn’t happen anymore. And I’m constantly hungry to the point that my brain is distracting me with…”

“Exercise more. I mean, I could put you back down to 30mg of Cymbalta, but then you would be in a lot of pain.” Whether he meant it to or not, his tone came off as threatening.

“But what about my thyroid? Are you saying there’s no way any of this could possibly be caused by a dosage that needs tweaking for my…”

“No. Absolutely not. Exercise more and start eating things without calories when you get a craving. You might need to enroll in a weight loss program and see a dietitian for counseling.”

At this point I was fighting back tears. It takes me some time to flip my thick skin switch, and I wasn’t expecting to need thick skin at my motherfucking rheumatologist’s office. So I was emotionally a little off-kilter.

“Stop eating so much,” he said one last time. But at this point my back was to him. I was getting my purse and putting on my coat while mouthing “cocksucking, motherfucking asswipe cunt whore.” Once my coat was buttoned, I grabbed the yellow paper from his hands. “See you in three months,” he said.

The fuck you will, I thought. I left  without even the chance to ask him about the pain in my big toes or the odd, tender bump high on my sternum between my boobs — and whether he thought it might simply be costochondritis (which seems to be prevalent among those diagnosed with fibro) or whether it might need to be investigated further.

I couldn’t get to my car fast enough. When I slammed the door and started the engine, I started sobbing.

A few days ago I got a letter in the mail that my primary care doctor, who works in the same clinic as my rheumatoglogist, was moving her practice. I was going to be looking for a new PCP anyway. This seems like the perfect time to switch health systems. Second opinions all the way around. I don’t expect doctors to be all-knowing gods, but they damn sure better let me finish a sentence.

I can’t believe I paid a $50 co-pay —  UPFRONT! — for a lousy three minutes of interruption and judgment.

Update 2/13/15: A Patient’s Open Letter to Christie Clinic
Update 2/19/15: Christie Clinic Responds to My Open Letter

 

 

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This Year Send a Valentine to a Stranger

no act of kindness is ever wasted

Pay it Forward for Random Act of Kindness Week 2015

At Christmas, Cheryl Gregory had a stroke.

She is unable to see her two sons.

Her siblings have been doing their best to visit her and keep her spirits high, but recently she was transferred to a new facility. She wasn’t recovering as well as the doctors like, so they transferred her to a new location in a different county. While the distance makes visiting her more difficult, it also doesn’t help that her brothers and sister are only allowed to see her for two hours a day.

Recovering from a stroke is hard enough, but fighting depression and loneliness makes getting better even more challenging, no matter how good the doctors and nurses may be.

Cheryl is only 63, but if her recovery doesn’t progress, she may have to stay in a nursing home for the rest of her life.

So I’m reaching out to my own family, friends, and complete strangers to show Cheryl some support. As Valentine’s Day approaches, I’m asking everyone I can to mail her a postcard, a get well card, a Valentine, or submit an online patient card to lift her spirits. Have your kids draw her a picture. Fold and mail an origami crane. Anything you can think of that might bring her a little extra joy.

Send a Valentine or 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

Use the share buttons

If you’ve only got five seconds or you already have plans for Random Act of Kindness Week, consider passing this post along with a simple like, share, forward, or retweet. Don’t forget to use hashtag #RAKweek2015.

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Is Caffeine the Best Drug?

becuo.com/coffee-humor-tumblr
becuo.com/coffee-humor-tumblr

The caffeine-free Emily experiment is officially over. I know, it didn’t last long, did it? I went precisely 36 hours without any caffeine, and the last 12 hours were brutal.

I’m no stranger to caffeine withdrawal. Two or three times in the past two decades or so, I’ve come off the stuff. Usually for a couple of months, but one time for more than a year. Sometimes I’d get a mild headache during the first 48 hours, but it was something I only noticed if I stopped to consider it. It didn’t keep me from carrying out plans, and I certainly never bothered to take acetaminophen or ibuprofen for it.

But things are a lot different now, I’m no longer prone to run-of-the-mill headaches. I’m perpetually one stressful situation or one low-pressure weather system away from a full-on migraine. I’ve explained what migraines are like for me already.

My migraine started coming on yesterday morning while I was at work. I had a couple of meetings I needed to attend and forgot my Excedrin Migraine pills at home. My 2 pm meeting was the last one of the day, and as I was walking down the stairwell to my co-worker’s office, I clutched the rail tightly. I had a slight case of vertigo, but the biggest problem was that my muscles just weren’t keeping up. I was off balance.

As I was going from stairwell to fourth-floor hallway, someone else waited for me to exit the doorway. I slammed my right shoulder into the door frame because I was so wobbly. “Oh, be careful!” she said, probably thinking I was drunk on the job. I couldn’t even respond to her. I had to focus on putting one foot in front of the other, getting to my destination, and sitting down in a chair.

Once I was sitting in the chair, I felt a little safer. At least I was unlikely to slam myself into inanimate objects again. The three of us were discussing how we could revise some tech support articles while looking at a computer screen when I started feeling like I would puke all over the department manager’s desk lamp. I looked away and tried not to see, just zone out. If I attempted to focus my sight, the pain got worse.

Finally, the meeting ended and I struggled back up to my desk to IM Dan and tell him I was finished for the day. He picked me up at the front door and drove us home. It’s only .2 miles from my front door to the office. I used to walk there and back twice daily, but now I’m just afraid to. It’s not about being lazy, it’s about embarrassment and fear. Embarrassment that I’ll take one of those random nosedives when my legs are just like, “nope.” And fear that if that happens, I’ll end up hitting my head on the curb, knocking out some teeth, or breaking a limb.

My hypothesis is that caffeine not only helps to relieve the migraines I do get, but it prevents me from being in a perpetual state of migraine. So as soon as I got home, I put on pajamas and took an Excedrin while Dan made me a cup of coffee with half and half and Hershey’s lite syrup. We closed the blinds, and I waited.

Within 20 minutes I was feeling better. “My caffeine experiment is officially over,” I said.

But of course, last night I couldn’t sleep a wink.

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Fibromyaglia, Diet, and Pseudoscience

FIBROMYALGIA dietOne of the things that fibromyalgia patients hear a lot from well-intentioned but often clueless friends and family is that if we just cut out x, y, or z from our diet, we’ll feel so much better.

Where to begin.

Whiner, Heal Thyself!

In the few short months since my diagnosis I’ve seen and heard suggestions from engineers, secretaries, and grocery store clerks saying that people have fibromyalgia because they consume something Dr. Oz or the Apple Cider Vinegar Guy swears is toxic.

  • Gluten: For the love, people. If you don’t have celiac disease, you’re merely obsessing over a diet trend that’s every bit as scientific as the anti-vax trend. Shut up or GTFO.
  • Aspartame: I can’t stand the stuff. Go ahead and preach, I guess.
  • Caffeine: Pretty sure if it was this simple, no one would have fibro anymore. Or I’d know of at least ONE legit case where cutting out caffeine cured someone of the chronic pain. Nonetheless, I’m experimenting with this soon. More on that in a bit.
  • High fructose corn syrup: I agree this stuff is not ideal for the body. But if it were the cause of my symptoms, I’d think they would’ve set in during my teens when I was consuming HFCS in immeasurable quantities. Stay awake until 4 a.m. but be in physics class by 8 a.m.? Why, yes, I will have that Mountain Dew for breakfast.

At best this dietary advice is pseduoscience bullshit; at worst it’s someone you love trying to tell you that you brought this all on yourself.

My Caffeine Addiction

Things got pretty bad for me recently. It all started with a cold sore last Friday that might have been the result of a mild case of the flu. (Thankfully I got a shot, else I might have been completely bedridden for two or three days.) The flu-ish thing then sparked a fibromyalgia flare.

While all of this was happening, I was sleeping for shit and using caffeine to get through my work day. Then I was throwing Excedrin Migraine on top of that because it’s—and I’m not exaggerating here—the only thing that helps my headaches. It also contains caffeine.

So there’s the catch-22. If I have headaches, I can’t sleep. If I consume caffeine too late in the day, I can’t sleep. If I consume caffeine all day long, I can’t sleep.

So I’m coming off the caffeine in the hopes that it will help me rest more easily at night. It’s only been about 12 hours since I had that bottled frappuccino at work. And guess what? Yep, headache.

Still I’m going to hold out for a while to see if my fibromyalgia goes away. For science.

I’m sure I’ll let you know how it goes.

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