My Disability Journey - Part II
For those of you who didn’t get a chance to read Part I, I highly recommend you do it as you might be lost with where I start off. Here’s Part I: http://spoonstoshare.weebly.com/blog/my-disability-journey-part-i
Now to where I left off…
Apparently, the doctor’s office that I was attending at that time doesn’t *officially* make referrals but give a list of whatever specialist (in my case, a rheumatologist) that you can choose from. I chose one of the doctors closest to where I live, plus, I I chose a woman in hopes she’d be more sensitive. I made an appointment with that doctor and prior to the appointment, I was sent significant paperwork to fill out about pain levels, and the like. I answered as fully as possible to make sure the doctor had the fullest picture of me that she could have.
My appointment came up, my doctor reviewed my paperwork and asked why I was there. I, point-blank told her, that I believed that based on my symptoms, that I had fibromyalgia. She asked me to specify, even though it was all on the paperwork I completed. She listened, took notes, and then asked me to stand. The doctor examined me and then checked all my tender points. I yelped louder at some more than others but essentially every place that she touched me hurt - A LOT. Higher levels of pain were noted in my lower back, shoulders and neck. The interesting thing that happened was after the tender point assessment, she took my hand and pressed VERY lightly on the pads in between my fingers and that hurt so much I thought I was going to jump to the ceiling! To this day, that is one of my more sensitive areas.
We then sat down again and the doctor told me that based on my reporting, the tender point assessment and physical that I did indeed have the “F” word. As one of my dear friends described it so well, it was a “devastating relief.” It was devastating to find out that I had a life long chronic pain disorder. It was a relief to find out that it wasn’t just in my head. She told me that she prescribed one of two medications to help treat the symptoms of fibromyalgia. Those two options are two of the most common medications prescribed for Fibromyalgia: Gabapentin and Lyrica. I, again, had done my research and according to what I had read, the side effects for Lyrica were much worse than that of Gabapentin (I have now more clearly learned that this is really a case by case basis). I actually was already taking Gabapentin for my Restless Leg Syndrome. The doctor increased my dose significantly and it didn’t work. She increased it some more, it worked some (went from an average daily level of seven to five) but I then became somewhat non-functioning. The Gabapentin made me incredibly foggy and sleepy. After several months, the doctor and decided to reduce the dose again but then I lost the help with managing the pain. I asked to switch to something else and she only offered me Lyrica. I realized it was time to find another rheumatologist who could hopefully provide me with other options.
I’m going to stop there. I know how hard it is for many of us to focus so this will be continue as a multi-part series of my journey. If you identify with some of this, or are considering application to disability, please feel free to reach out and I can help you with the knowledge that I now have from the experience.
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I’m Kate Straus and I’m a Certified Fibromyalgia Advisor. I help Jewish women feel confident in their ability to practice their faith while navigating the ups and downs of fibromyalgia. I’m using the disease that at one time knocked me down, to help support others live life to their fullest.