Why Spoonies Give Up

I decided that I had enough with my rheumatologist, (the second one I’ve tried thus far.) But who was going to manage my fibromyalgia care? I decided to try a medical group who has a special fibro care program, something that isn’t very common. Also available is complementary medicine and a med spa for massages and such. I called this week, told the scheduler why I wanted an appointment, and she told me the earliest appointment available was Saturday at 4 pm. Great!, I thought. This way Mike won’t have to work from home for me to go to this appointment alone.

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I wish I could go back in time and smack that scheduler up so she wouldn’t have set up a huge waste of time for me. It was abundantly clear that this doctor didn’t feel like being there at 4 pm on a Saturday. He also had no. fucking. clue. as to how to medically, (or relationally) treat someone with fibro. I’ll just do bullet points for how the appointment went.

– He didn’t take or look at the patient history, labs, and other test results I took the time to put together so as not to waste his or my time.
– It was pretty clear from his tone of voice that he didn’t understand why I had left my two previous rheumatologists. It was like he didn’t get why I thought my experiences with them were bad ones.*
– Diarrhea of the mouth began. Without asking any of my habits, he immediately launched into how people with fibro need exercise and I can’t spend all my time laying on the couch. I have to “use it or lose it”. I informed him that I have two young girls; I don’t spend all my time laying on the couch.
– He asked the basic “duh” questions: Where does it hurt? Is it joint or muscular? How’s your stress?
– He mentioned a few complementary medicine procedures, but then said he wouldn’t do any of them because it would hurt or it weirded him out.
– He told me that doctors don’t really know what to do and how to treat fibro.
– He criticized me for having to bring food in a lot for dinner, after I explained that I can’t cook as much as I used to because it hurts to stand in the kitchen for that long. It was mostly because he was concerned for the health of my children. (I explained that it’s just for Mike and me; we feed the kids different food from home.)
– He wrote an order for a sleep study. Rather than recommending a place, he told me they were everywhere and to just pick one.
– He said that the medicines I was on were about the most they could do for someone with fibro. He said that they do what they can medicinally, and then the patient just has to learn to live with the pain. I believe it was the long-winded version of “Suck it up”.

Finally, I just cut him off and told him what my treatment goals were. Specifically, I wanted to try any natural options available to cope with or alleviate pain. He referred me to their two naturopaths for that. He told me I would need to bring my big girl veins for the first appointment because they were going to draw a lot of blood because the naturopaths test for everything. He said going through that would be enough to make him not want to do it. I stood there in the room, arms crossed and staring him down. I was filled with rage, exhaustion, incredulity, and defeat. I screwed up my face and set my jaw so that I wouldn’t cry. That would be for when I reached my car.

Can you imagine if that had been my first doctor’s appointment for fibromyalgia? Can you imagine if I wasn’t confident in myself and my diagnosis? The ignorance and arrogance of our doctors can be a lethal combination for timely and appropriate help. So many journeys are stopped dead in their tracks because an insensitive doctor acts as though the patient’s problems would all disappear if they just took a walk everyday. Patients aren’t always open and honest with their healthcare providers for fear of being ridiculed, shamed, or made to feel crazy. When we feel as though there aren’t any safe havens, we stop trying. We end up enduring more pain than we should because the thought of another useless or abusive doctor’s appointment is more painful.

In this day and age, it is appalling how ignorant doctors can be when it comes to chronic pain. Millions of people live with it yet, only now, are syndromes like fibromyalgia beginning to be viewed as legitimate. Doctors who went to medical school more than five years ago, or don’t have any special focus or training with regard to chronic pain, are clueless. In my experience, cluelessness in doctors leads to doubling down on their ignorance and how much of a dick they are to you or how dismissive they are of you and your symptoms. Put simply, if they don’t know what to do with you, they don’t want to deal with you.

With such attitudes within the general medical community, it becomes incumbent upon spoonies to be their own advocates. We must surround ourselves with the support of loved ones and those who are on the same journey. We need to support organizations, like the NfmCPA, who amplify our voices when it comes to lobbying Congress for research dollars. We need to let our healthcare providers know when changes need to be made and not just accept whatever is handed to us. I have hope that the medical community will learn to help us. But we can’t just wish upon a star and dream. We have to make it so.

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*The reason I left my first rheumatologist:
At my first appointment, he prescribed trazadone to help me sleep. After a couple of doses, I began having intense suicidal thoughts and found myself yelling, out loud, to shout down the voices in my head telling me to kill myself. This ended up happening on a Saturday, so I left a message with a live person through the answering service, asking what I should do. I never received a call back. My primary care office ended up helping me out.
At the next appointment he fussed at me for calling on Saturday, I guess because I’m supposed to schedule my drug-induced mental breaks durning office hours. During that appointment he said he wanted to step down the Lyrica and replace it with Topomax. I asked if there were any side effects I should be concerned about. He shrugged and said, Only if you have glaucoma. When I got home, I researched Topomax. It looked like there was a possibility of some pretty horrible side effects. After that, I was done. The trust was broken, and I can’t have a professional relationship with someone like that.

The reason I left my second rheumatologist:
I actually stayed with her for about a year. I liked her at first. But it didn’t take long for the things I didn’t like about her to outweigh the good. She never remembered what we had talked about previously or what I was taking. I swear, she must have asked me if I had tried Neurontin or was taking a yoga class at three consecutive appointments. It was very difficult to get a word in edgewise with her. She tended to just steamroll you with her agenda. It seemed as though drugs we the only thing she cared about as far as treatment. The time I asked about natural options, she just handed me a pamphlet for a vitamin mix that is supposed to help with fatigue. And my weight. She was so fixated on my weight. No, I’m not a small girl anymore. The Lyrica and cupcakes made sure of that. She was bound and determined to get me on thyroid medication, even though my labs show that my TSH levels are within normal limits on two consecutive tests. (She also sort of fussed at me because I had my separate T3 and T4 levels tested when the order was just for TSH.) I expressed my unwillingness to add another medication to my cocktail while my levels fell within the normal range. She told me to take it and get yet another thyroid test. She also, again, told me that low thyroid will cause fatigue and weight gain. I’m like, you know what else causes fatigue and weight gain? FIBROMYALGIA AND LYRICA! I felt like I went with her as far as she could take me, so I’ve left. And I’m not the only one. I know others who have seen her and left because of her nonsense.

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11 thoughts on “Why Spoonies Give Up

    • Fortunately, I have a friend who sees doctors in the fibro group at that practice, and she is going to say something to the lead doctor in the fibro group.
      I plan on seeing the doctors who are actually part of the fibro group from now on, along with the naturopath. I refuse to let a bad experience with one doctor deter me from seeking other help there. I’ll just have nothing to do with him in the future.

  1. Oi that sounds a lot like the last appointment with my old GP.

    Came in eating a popsicle and asked “Well you forced me to stayhere to wait for you, what do you want?”
    (This was after getting 2 days notice she was going on mat leave.)

  2. What a jerk (and a cry-baby) – “all those options weird me out” / he couldn’t handle a big blood draw? Obviously, he’s never been sick a day in his life.

    As for your past doctors, I get that, too. On the second one though, I’d say dig into some research on what “normal” test results are and how much they vary from lab to lab. There’s also alot of research out there about how many people (especially those with Fibro) do really well to have their thyroid treated even when their tests show “normal” ranges. I have a lot of issues with “normal” ranges because they are based on a general average of healthy people, which means that even if you are healthy and fall on the edges you may be missed. But, most of us with Fibro and AI issues are not normal to begin with, so our “normals” often don’t match up with the average “normal”. – IOW, even though our blood might show as normal for the average bear, what our body actually needs is different than the average normal (so while it looks normal, it’s low/high for my body).

  3. Pingback: Another day, another asshole doctor | Julie, Unfiltered

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