Your Rheumatologist: The Secret Sauce
Waiting in Rooms
Since being diagnosed with fibromyalgia I have seen 10, yes, 10 different rheumatologists. I consider myself pretty lucky that I live in downtown Chicago, where access to great hospitals and caregivers is readily available.
The first doctor I saw diagnosed me with Fibro without actually giving it a name. He told me I had an “invisible illness” and then promptly brought in a psychologist to talk to me about “my new life.” One that included a plethora of narcotics, not working and essentially living like a vegetable.
As referenced in my first article, it was Dr. Brown that gave my condition a name and with that, gave my husband and I hope.
Dr. Brown passed us along to a rheumatologist that specialized in Fibro, let’s call him Dr. G. I’ll never forget the first day we went to see him. My husband and I park in the garage of a well know hospital and then proceed to make the half mile trek to his office (this hospital was huge). By the time we got to the waiting room, I was done. Nauseous, unable to walk and again, lobster claws for hands. We check in and take a seat. No sooner did two very elegant women walk in and sit down next to us. Both wearing fur coats, looking... well, just fabulous. The younger of the two says hello and introduces us to her mother. She asks me if I have Fibromyalgia and I feebly answered yes. She then says, “So do I, I’ve had it for 5 years, it will get better.” Yeah right, I thought.
Dr. G’s assistant calls us in. She weighs me and then pokes and prods the most painful parts of my body (known as tender points). I scream in pain and at one point try to physically move off of the examination table. What is this woman doing, I thought? She obviously has no idea of what I’m going through.
Then, in walks Dr. G. He asks how I’m doing and to rate my pain on a scale of 1 to 10. I say 100. He asks me about all of my symptoms and I slowly rattle off nausea, throbbing, burning, aching pain and extreme exhaustion. He says, “You’re in bad shape.” No kidding! He then looks at my husband and says, “We are sending your wife to a 30 day Fibro bootcamp.” Excuse me? Thirty days, have you lost your mind? I barely made it to this office and will probably have to sleep for two days just to recover. Dr. G gives us a prescription for an anti nausea medicine and another for pain, as well as a referral to “Fibro bootcamp.”
Camp consisted of pain education, occupational and physical therapy, meditation, mindfulness, weekly doctor and psychologist visits to gauge my acceptance of this chronic condition. Day one was horrible, but by the end of the first week, I felt hopeful, something I hadn’t felt in over a year. I thought that with careful management and new techniques, I could actually get my old life back.
My optimism didn’t last long. On graduation day, the doctors told me I had to change my lifestyle. They said it would be best to work at a job that was part time and it should be out of my home.
What?? This couldn’t be my future. I love my job- I love my life. But now, three doctors had all said the same thing, were they right? I refused to accept this fate. My husband and I subsequently went to 6 more rheumatologists, all at well known institutions and they said the same thing, “Your life as you know it, is over.”
Then, a stroke of luck, fate or prayers being answered.
The Wait was Over
Through my own research, I found Dr. K. It took me six weeks to get an appointment with him. To say this was my last ditch effort on finding a doctor who would work with me on what I wanted to do with my life and manage my disease is an understatement.
We waited two hours to see him. When he finally joined us in the examination room, he like all the others, poked and prodded in my painful tender points. Hope is lost, I thought. Dr. K asks my husband and I what we want our life to look like. No doctor had ever asked me that before.
So I told him. I told him how I didn’t want to be on narcotic pain medication and how I wanted to live as normal of a life as possible. This meant working at a full time job and having some semblance of a social life. I told him everything with tears streaming down my face because I felt like the chance of any of those things happening was slim to none. He listened very intently and when I finished he said, “I can help you.”
He did, and he has helped me for the past seven years. Through weaning off of narcotic pain medication, through trial and error of new medication and cutting edge treatments, Dr. K gave me and my husband our life back. Not exactly the same life as before Fibro, but one where I can live and thrive despite my condition. And for that, Dr. K and his staff is my version of the secret sauce.
Part of my mission is to bring the Fibromyalgia survivor community together to offer real support and encouragement to one another. You can be part of this movement by sharing your story too. Have you found the right doctor for your wants and needs? Please tell us your story in the conversation below, let’s talk about it.