I'm getting a little tired of all the little ironies that are happening to me lately. I feel like I'm missing a message. This month in group we talked about PTSD and also how we often feel traumatized by healthcare itself.
Today I had one of those really awful appointments. The ones where you leave red-faced and in tears feeling like you took ten huge steps backward. Even now 12 hours later I still feel frustrated and demoralized and overwhelmed by the experience and I remember how it used to be like this every time.
I have always had a pretty bad interaction with rheumatology doctors, I'm not sure why. Maybe it's because fibromyalgia was dumped at their doorstep and they didn't know what to do with us (righty so since it's not rhuematic). I feel like a football being punted between doctors sometimes. Anyway, everytime I've seen my rheumatologist it's been just this side of hostile telling me that they can't do anything for me and I should see my primary care.
Many years ago I was put on hydroxychloroquine (plaquenil) for my positive ANA. None of my blood tests have revealed which autoimmune they suspected me to have, but they treated me all the same. I never had any negative side-effects and the combination of ANA and high CRP seemed likely to be immune activity. There where a couple of instances where I went off for more than two weeks and each time I felt increasing fatigue as well as joint and hip pain so I assumed it was suppressing some form of activity. I don't know for sure.
About two years ago I was told by my rheumatologist that I didn't need to see her that I should continue my eye exams and see my primary care. They would continue to fill my prescription so long as I made my eye exams regularly. Before all that though there was a bit of a mix up, I was told I couldn't see the rheumatologist I was seeing for more than 8 months and so I was scheduled with another. When I returned for my next appointment I was given a verbal lashing for having seen the other doctor and they almost refused to see me at all, but they took me back after I explained the situation.
A few months back I started having some issues I thought rheumatology might be best suited to explore, at this point it has been about two years since I last saw her and so I sent an email mentioning the issues I was having and asked to make an appointment. This was followed by a volley where they didn't answer any questions and told me I should consult my primary care. My primary care told me that I needed to speak to my rheumatologist because he didn't know much about what I was asking -he is my favorite because he isn't afraid to tell me he doesn't know and will refer to someone who should. After another round of emails my rheumatologist told me I did not need to see them and so I left it at that. Less than a month after that I went to refill my medication and was told that I needed to see my rheumatologist in order to get a refill. So I scheduled an appointment but the only available was with her nurse practioner. Ok.
Today I went in to see her, my only goal being to make sure I was complying. Just to make a note: this isn't a drug people abuse. I sat in the waiting room for about twenty minutes and then sat in her office for another 30 before she came in, that's not uncommon though. At first I thought we were going to get on well, I had been reading her packet she left for patients, she asked if I found it helpful and I told her I did. In her packet she had many brochures for Khoo wellness and so I mentioned to her how we (the group) collaborated with them and she seemed pleased and asked about the group. After that though things started going bad, she asked me why I was there and I told her the situation, she got pretty frustrated that I hadn't seen her despite telling her why. Then she told me that they don't just write prescriptions if you aren't seeing a doctor, and I again explained that they had sent me off, not me and that I had been complying with the eye exams and seeing my primary care. From there she started asking me why I was put on this medication and what was I intending to treat with it? I tried to fill her in on my history and she kept interrupting me to tell me I didn't need to be on this medication and they aren't in the habit of treating a blood test (did she think I wrote script for myself?) A couple of times she insisted there was nothing in my file and I had to get her to slow down to see the tests. At this point she began to tell me that I just needed better management of my fibromyalgia. When I asked her what she meant she started lecturing me on sleep hygiene and other "things". She didn't initially ask me what my sleep was just told me I needed to shut off the light and sleep or stay out of bed. She punctuated every satement and looked at me like a sly child sneaking cookies. When I tried to talk she spoke over me and I never got a word in. Then she said very aggressively and out of nowhere; well your doctor is taking you off your narcotics anyway so it doesn't matter. At that point I did interrupt and told her he was in fact not doing so and I didn't understand why she would say that since I had just seen him. She said it's in your record; right there! Referring to a document that stated that my doctor had informed me their clinic wouldn't treat anyone using medical marijuana products, that doesn't apply to me since I don't take medical marijuana anyway. After that she became very irritated and then started lecturing me on the efficacy of narcotics for fibromyalgia and then told me I should be on cymbalta, which I obviously hadn't tried. I replied as calmly as I could that I had tried antidepressants of many classes, to which she responded; it's different! I told her I reacted badly to them and again she insisted it was different. Then she said I should be on something that is approved and I said like Lyrica? Or Gabapentin? Or muscle relaxers? I've tried those and had horrible side effects that where in my file. She began yelling at me that they weren't doing anything and they didn't have my pain under control and that studies show they aren't right. I told her that I understand where she was coming from and that I wasn't trying to be combative but that for me they had reduced my pain by at least two points and nothing else ever did that. I told her I have met many people who find them effective and many who don't. In an attempt to both change the subject and pacify her I asked her if she had ever worked with LDN or other protocols and did she find anything else effective? She asked me what that was and so I started to explain and before I could finish she literally waved me off and told me she wouldn't work with it and that it was not effective and not studied. I admit, I knee-jerked a response that it was being studied and was showing promising results, she jumped down my throat to tell me she was a highly intelligent person and was considered the fibromyalgiaologist! She then sat back and folded her arms and yelled, what do you want me to do for you?
I wish I was kidding, but I'm not and sadly this is an all too common. The minute I stepped through the double doors I burst into frustrated tears. I'm so tired of being treated this way and knowing there is nothing I can do about it. I understand that we are difficult patients, but I'm so tired of sitting there while doctors or practitioners tell me what I should think and feel even though I've been dealing with this for 11 years. I'm tired of pretending I don't know anything and being scared to voice it when I do because they hold all the power and can make my life hell if I don't agree. I'm tired of being treated like a statistic when it suits them and not when it doesn't. What works for me won't work for everyone. I have every right to research and having a degree doesn't exclude us from learning too. Clinical trials have their place, but our voices should be heard too, and they are not showing the same picture.
For example: from a site dedicated to the voice of the patients and not of the drug companies. Here is what it's saying:
