English: The location of the nine paired tender points that comprise the 1990 American College of Rheumatology criteria for fibromyalgia. (Photo credit: Wikipedia)
I had my first rheumatology appointment. It was the intake, so it lasted about two hours. I went in prepared with a printout of every symptom that I have frequently and my history over the years that may have contributed or could have been early signs of Fibromyalgia (or something else). I went in with an open mind that I was wrong about the Fibromyalgia thing. Even so, I started to feel panicky when she started to make comments that she didn’t seem to think that’s what I have because it took me so damned long to even get into a rheumatologist and if it’s not what I think it is then who’s going to treat me?
Then she tested the trigger points. With everything I know about Fibromyalgia (including the damn trigger points) I didn’t even realize that’s what she was about to test. I thought she was going to test my spine for MS first since we had just finished talking about. Suddenly I felt like I was exploding from the inside, and everything was about to fall off of me. I nearly jumped out of my skin and wished I could leave my body. I admit it… I cried. I couldn’t catch my breath from the pain. I’m in tears right now recounting this to you. It’s a little more than 12 hours later and the trigger points still hurt. The doctor seemed surprised that when she just (apparently) gently pressed my trigger points I had such a strong reaction. It was a similar automatic reaction as when you have your reflexes tested with that little rubber hammer when they hit your reflex point at your knee. Except for the fact that it’s a combination of pain, intense shakiness from within and without, breathtaking, shocking to the entire system with each trigger point, a bruised feeling in a center point that radiates outward to everywhere, the most intense centralized nerve-like pain… I could go on but I honestly am not sure I can adequately describe what it’s like to someone who wouldn’t feel anything at all when their trigger points are pressed. The intensity is just… there’s an emotional response to go with the physical. It’s incredibly scary even once you realize what’s going on. I’ve had it done once before to diagnose the Fibromyalgia and I knew nothing at all about the disease back then, knew nothing about trigger points or what the doctor was doing or why. I only knew it left me limp and crying.
I was still limp and crying yesterday but at least this time I knew why. I pray to God and all the Saints that my daughters never, ever have to go through this if only so that they never, ever have to have their trigger points tested even once. Sorry, I got a little off track. So the doctor was a little surprised because I think she had decided that I had something else. She said,
“Oh! It appears you have ‘some Fibromyalgia!’ Do you know what that is? What that entails? You said there are family members with it but are you educated at all about it?”
LOL LOL LOL again.
She asked me this while I was still crying, and in the physical and emotional mess I was already in I just cried harder. I couldn’t even nod my head. She put her arm around me and had me lay back on the exam recliner (not a table because let’s face it, people with connective tissue disorders have a hard time laying down all the way on exam tables). She gave me some time to catch my breath and calm down.
And then she proceeds to tell me what she thinks she knows about Fibromyalgia and how we’ll go about treatment. Which is that she can diagnose it, but she doesn’t prescribe medications for it. She can prescribe therapies and she did… hydro-therapy, so yay for that… and she can recommend to either my neurologist or psychiatrist medications that she thinks would help because,
“It’s a neurological disorder brought on by lack of sleep.”
O’rly? is what I think my exact response was. Of course it must have been paired with an incredulous facial expression because she repeated what she said with a little bit of defensiveness in her voice and expanded a little bit like she was talking to a child. Given all I know about Fibromyalgia, that was NOT what I was expecting to hear from a top-rated Rheumatologist. It felt like the appointment came to a screeching halt. I was so shocked that I had trouble forming a sentence to tell her what I knew. I see in a month or so, which means I’ll be printing out a metric shit-ton of articles that I’ve shared here proving it’s not just neurological and not “brought on by lack of sleep” but that there’s actually an issue with the nerves. That it’s biologically based. That it can’t be remedied with sleep. I’ve tried. Chronic Fatigue Syndrome is part of the disorder. It doesn’t mean I’m not getting enough sleep. It means that no matter how much sleep I get my body doesn’t recognize it as “enough.” There will never be enough recuperative sleep or rather… I will always go through phases where my body doesn’t recognize that I’m actually getting enough sleep.
But then this is part of why I’ve blogged about the fact that I don’t think a Rheumatologist is THE Doctor to treat Fibromyalgia. We need a Fibromyalgist. Not treatment between several different doctors… a doctor who specializes mainly/only in Fibromyalgia and related/similar disorders. It’s my own fault for going into this with really high expectations and hopes. Fibromyalgia may be one of the disorders that this office can diagnose and treat, and call it one of their specialties, but it just means that they’re qualified to diagnose it. Anyway, there’s more.
She said that we do still need to figure out if there are any additional diagnoses on top of the Fibromyalgia, and she strongly suspects that there may be. I have to get an X-Ray for something I forgot why because I haven’t had enough coffee this morning. I have to get some comprehensive blood tests for vitamin levels and various diseases and disorders. She’s very bothered by the fact that with all of the easily-broken bones and sprains I’ve had since childhood, not one single person or doctor thought to run tests or figure out WHY these things were happening. She’s very bothered by the fact that no one ever picked up on all of the various infections and illnesses I’ve had being abnormal and WHY didn’t they encourage me to figure out why they were happening and insist on running tests. I told her that I’ve actually asked the same questions, I’ve asked my doctors and even begged to the point of ordering my doctors to run certain tests that I hoped would give answers. She’s bothered that not one single doctor except my now defunct gastroenterologist took some initiative in helping me figure things out and pointing me in the right direction.
This doctor is going to help figure out what diagnoses I may have in addition to Fibromyalgia and/or rule out everything else. And she said that that’s basically all she can do. She’s a diagnostician.
So I’m really left with a neurologist who doesn’t feel comfortable prescribing Fibro-related meds because it’s “not her specialty” and a reticent-to-believe-in-Fibro-as-biologically-based psychiatrist to take her recommendations and/or be willing to try various Fibro meds until we hit one that works.
Mixed bag right there. I’m still a bit of a wreck physically and emotionally, so I’m not really sure how I’m going to feel about the appointment itself for a while. I do know I was excited as soon as she prescribed the hydro-therapy with a real, um, what’s the word? Not just therapist… damn. Word recall. Help. Eep, it’s past time to get ready for work, but I’ll be thinking on this and probably add a new post for anything I haven’t thought of right now. Coffee may help with that process. :-)
But blessed Baby Jesus… I pray that no one ever, ever, ever tests my trigger points ever, ever, ever again. That sucked donkey balls more than I can ever express.
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