Rheumatology Dis-Appointment

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.

Very disappointing.

Tulips_covered_in_snow

Text copyright Snowdroplets 2016.

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17 responses to “Rheumatology Dis-Appointment

  1. That sounds like a really frustrating appointment. I’m so sorry 😦

    I’m not sure where you’re located, but maybe there are some online fibromyalgia support groups in your area that may be able to recommend some good specialists for you. Sometimes it’s about finding the right doctor and it can take a little time, although I know that definitely doesn’t help ease the frustration while you’re navigating the system. Hugs x

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  2. Can I say that the doctor you saw sounds like an old fashioned, out of date, asshole? I hope your okay with that terminology. Fibromyalgia is not in your head. I believe it is closely related to stress and inflammation. I find researching for myself is the best way to go. People who write books are usually more knowledgeable and they care. One I would recommend is my Dr. Gary Kaplan called Total Recovery. It really helped me. Yoga and an anti-inflammatory diet is what helps me. I kinda feel like fibromyalgia is a way to make us really take care of ourselves.

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  3. I’m sorry you had such a disappointing appointment. I hope you won’t let it discourage you and you’ll find another doctor, one who’s actually knowledgable and willing to help you.
    I hope I’m not giving you unwanted advice and I don’t know if you have already looked into it, but in my researches on RPL I’ve seen a lot of hype over LDN (low dose naltrexone), including for fibromyalgia. I just thought it could be something you may wish to research and discuss with a doctor about.
    Hugs

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  4. I’m so sorry for the horrible experience. I had a similar incident with the rheumatologist last year. I was told ‘they don’t believe in Fibro’. I couldn’t believe what I heard I put in a formal complaint and received an apology from the hospital. This year I’ve got to see a rheumatologist again but I’ve requested to see a different one

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  5. I am so sorry to hear about your disappointing rheumatologist appointment! I went through a lot of this crap with my neurologist, and ended up with a bill that took me several months to pay off. So long story short, I can relate to this only too well. 😦 I am lucky, though, to have found a GP who agreed to treat me with his knowledge of FM and who takes input from me as a scientist who keeps up with FM literature. We decided not to bother with a rheumatologist unless things got really worse. I hope you can find a good doctor as well – may not have to be a specialist, but someone who understands and offers useful advice.

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    • That’s really fortunate your GP could help! Mine has been supportive but has few recommendations beyond medications, and that’s just not the solution for me. I’ll have to keep looking!

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      • Yeah, same here. I am on medication and I recently started an aquatic physical therapy program (which I am liking). He’s also suggested a shiatsu massage chair and a jacuzzi, LOL!! I am getting a kind-of-jacuzzi at the aquatic therapy pool and it sure feels good!!!

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  6. I felt the same after seeing the Rheumatologist and I felt fobbed off. I am going to see another Rheumy regarding psoriatic arthritis. I have done lots of reading regarding the fibro and I see lots of people turn to alternative therapies, so far I haven’t found anything that helps but I am trying various things. Some people have great experiences with acupuncture so I have read, I don’t know if you have tried it or would be willing to try it. I just wish more was known about the condition, it would make it a lot less frustrating and frightening at times. Wishing you all the best x

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  7. I had a similar appointment a few weeks ago so I feel what you have gone through. It’s not right that we are just fobbed off with be disciplined and grade your exercise. There must be more answers than that. One thing I have tried and found beneficial is flotation therapy. I have blogged about it if you search on my page. On my phone typing so can’t post link. Thank you for the follow by the way.

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  8. Hi again. Here’s my blog on floatation therapy https://sailingpenguin.wordpress.com/2015/12/09/do-not-disturb-i-am-floating-today-i-wish/ I have had 13 sessions now and I find it helps my pain and also my sleep. It might not work for you but worth giving it a shot. There’s a big project called the fibromyalgia flotation project which is doing research into the benefits of flotation and fibromyalgia. 10 of my sessions were done as part of this research.

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