I had a 6-month check up with my PCP on Wednesday. Since my Fibromyalgia diagnosis, this has been something she insists on in order to see the progression of my pain and how I’m handling it. She does what amounts to a physical except I get to keep my clothes on at these check ups.
We talk about exercise (yoga and some walking) and my diet (vegetarian with little sugar, plus no HFCS or food dyes; reduced dairy and reduced animal byproducts). She checks my weight (hey, I lost ten pounds since my last appointment!). She checks how I move; motions I can and can’t make; triggers for pain and other issues; posture; word recall; language usage; asthma and lungs; ears; spine; skin issues; eyes; mouth; reflexes; asks questions about the pain itself regarding location and the nature and quality of the pain. Um, I forget the term for that. The… the… diffuse pain and describing what it feels like. It has to do with the seven types of pain that Fibro-sufferers feel. There’s an info-graphic I’ll have to try to dig up.
My PCP wasn’t happy with the progression of my pain because A.) the flare ups have increased in frequency and I rarely have occasions of tolerable or “feeling really good.” I have a majority of time where I feel sick from the pain it’s so high, and it affects my sleep, moods, and anxiety levels. B.) Even when I’m feeling “good” the pain is high, which means my baseline pain, the pain I feel at the lowest possible pain level all over my body, can be distracting. C.) I have a lot of breakthrough pain where I have to take something in addition to my daily med. And yet, when I’ve accidentally missed a dose of the Gabapentin/Neurontin (only 200 mg, taken 3X a day = 600 per day), the pain is quadrupled. I don’t feel side effects, I just feel pain so excruciating I feel like throwing up and wish for nothing but being unconscious. I didn’t explain things quite like that to my doctor, but gave her an abbreviated explanation. I tried to hold it in for the appointment.
She was able to see through my bravado (I had one of my daughters with me) that I was in severe pain in spite of taking my meds exactly as prescribed, and with my insistence that they’re working and minimizing the pain. I insisted I was tired, it had been a long day, and the weather being so cold wasn’t helping matters. She said,
“Mmm hmmm. The weather. Yes that has a grande effect but it can’t always be the answer. You are doing everything right to minimize your disease and it’s not your fault. But you know Fibromyalgia is progressive. You are in a lot of pain. I see it and you need something more than what I can prescribe. Your current dose of Gabapentin is as high as I can go. You take the Tramadol for breakthrough pain, but you don’t want to take it often and usage is increasing, so the answer is the pain management doctor. I know you don’t want to do that, but my dear, you are at the point that you need it. Please trust me.”
I had refused a referral to a pain management doctor a year ago and again six months ago. I think this time, I need to trust her as she asked. Luckily it’s one in my own doctor’s group, who has a great reputation, and my PCP knows her as a coworker in the same building.
Then she asked me about my current Rheumatologist.
“So, my dear, I have your list of medications: one for allergy, migraine, one for depression, sleep, and one for pain plus the occasional Tramadol. But I have nothing listed from your Rheumatologist. What is she treating you with? How is she treating your Fibromyalgia?”
I told her the simple answer: She’s not. You don’t see any medications or treatment plan from Dr. Rheumatologist because although she considers herself a diagnostician for Fibromyalgia, she doesn’t feel comfortable prescribing medications for it and believes it’s a sleep disorder. She refuses to accept that an inability to sleep well is a result of being in too much pain to sleep. She also believes it’s related to anxiety, caused by anxiety and depression refusing to see those things as being mainly/partially caused by Fibro. She doesn’t even believe it’s a neurological disorder yet feels a Neurologist is better suited to prescribing Fibro meds or barring that it’s the job of the PCP.
I think my doctor’s jaw dropped. Her lips pursed and she huffed through her nose.
“Hmm. I know a Rheumatologist who will accept this referral I’m sending, and since you have the diagnosis and this doctor is my colleague, he should accept you into the practice. Fibromyalgia is one of the specialties.”
Guess what? I had a message on my home voicemail when I got home from work today. It was from the new Rheumatologist inviting me to call as soon as possible, and if I couldn’t get to them before noon today to call them on Monday to set up an appointment.
Suddenly I’m remembering my prayer… and The White Rabbit.