After having been diagnosed with fibromyalgia eight years ago, I finally went to my first appointment with a rheumatologist. And, like so many aspects of fibromyalgia, it was confusing and disappointing.
Why haven’t I gone before? I’m not sure. I think it was partly the cost. I also wasn’t sure where to go and who to see. Maybe I was still living in that denial where I hoped the fibromyalgia might go away or be something I could overcome on my own. Wishful thinking.
Finally, the consequences of my condition became so much that I knew I had to do more and try everything I can. As I’ve been struggling with infertility, the fibromyalgia is a big part of our decision-making and has a huge impact on my life. I couldn’t make these decisions and accept the outcomes without trying everything I can.
So I finally got myself into an actual rheumatologist.
I don’t know what I was expecting, but surely more than I got.
Okay, here were some of the take-home messages as I understood them:
- Well, we don’t really know what causes fibromyalgia or the mechanisms of the condition. Actually, I think it’s a neurological condition that neurologists need to be studying because it doesn’t fit within the wheelhouse of rheumatology. (Um, okay, so can I like get a referral or a refund?)
- You don’t really need to be too concerned about fibromyalgia and pregnancy. Sure, it won’t get better during pregnancy, but it’s not that bad. (Hmm, maybe you don’t understand how bad my symptoms are now and how much it would affect my life if my symptoms got worse – and, I hear from other professionals and patients how difficult pregnancy can be for someone with fibro. I don’t think it’s just no big deal.)
- We don’t have any great treatments for fibromyalgia, especially since some of these medications can’t be used if you’re possibly going to become pregnant (because I still can’t quite give up hope entirely). The best recommendation I can make is graduated exercise – you have to start small and be extremely disciplined. (Is that IT??!!! I knew that from Google years and years ago.)
Oh, and here’s a gem that came out while discussing the possibility of Sjogren’s causing my extremely dry eyes:
- You can put KY Jelly (yes, the “personal lubricant”) on a Q-tip and smear it inside your nostrils. (Well sure, that might be good advice for someone who has dry nostrils, but it’s an odd suggestion for someone who doesn’t even have dry nostrils. I don’t need KY Jelly in my nostrils!)
He said that I was at high risk of autoimmune disorders and ordered a bunch of tests. And that was it. The tests, thankfully, came back almost all good results. One notable exception I will write another post about. He referred me back to my primary care doctor. And that was it.
I’m supposed to treat my own fibromyalgia with disciplined graduated exercise.
Well, no kidding, exercise huh? I never considered that! Maybe I should give it a try!
I can’t describe how disappointed I was. I was so hoping for some actual help. I was hoping for someone experienced and knowledgeable who would help me deal with those challenges and obstacles that have made my attempts at disciplined graduated exercise so discouraging and difficult so far.
So I know enough to know that this just means I need to find a different doctor who actually knows something about fibromyalgia, who understands that it can be actually debilitating and exhausting and painful, who can give me a more realistic understanding of pregnancy with fibro, who knows it’s not fair to tell a desperate fibromyalgia patient with depression and under great stress to just heal themselves with discipline.
I know this, yet I have the challenge and the delay of finding a new doctor and starting again, again.
Text copyright Snowdroplets 2016.