Today I as write this, I’m having a pretty painful day. I’ve felt pain sensations throughout my body – but primary areas today are in the jaw, neck, as well as eyes. Secondary areas are ears, hands/fingers, and back. And so, my writing is going to be less positive. However, with that said – it is important to note that yesterday my pain was low, and I’ve had both strings of good and bad days since my last post. I welcome the periods of respite. With that said, the condition is most definitely progressive in nature, and that aspect of it is very scary, yet I’m learning to deal with it the best way I can.
And so, here are my updates:
Last week I got the test results back from the rheumatologist. They all came back normal. The Sedimentation Rate (ESR) was slightly elevated and outside the reference range, but I was told its not of significance.
She said there are no other tests that she knows of that can be run at this point.
I also met with my primary neurologist, who provided me the last of the tests he ran, which came back normal. He told me he doesn’t know of any more tests that can be run, and said unfortunately the condition remains “idiopathic”. He was very sympathetic, saying how he realizes that the situation is unacceptable, and even apologized for this.
He told me he would give me a referral if I want to seek further opinion from the Mayo Clinic or Johns Hopkins. He said he is not sure what other tests they would be able to do, but that they do have specialists for all sorts of rare conditions.
My plan is to consult one more time with the original neurologist who led me to the Small Fiber Neuropathy diagnosis, to get her view of things at this point. And with whatever information she gives me, I’ll make one last appointment with the rheumatologist. After that, it seems that the Mayo Clinic will be the last of the line in seeking an answer and treatment.
On a separate note, a few weeks ago I setup an appointment with a primary care doctor. For the past couple years, I have not had a primary care doctor – ever since they kept diagnosing my condition as being “anxiety” I viewed it as a waste of time. Nonetheless, my new primary doctor I found to be highly sympathetic to my situation, despite the little she could do. She referred me to a pain psychologist, who I had one session with so far.
The pain psychologist session I think was helpful, and she gave me a bunch of papers that give mindfulness techniques, talk about brain neuroplasticity and provide exercises to help, etc. I’ll go through the process and see how it goes.
Nonetheless, there are disconcerting things. The pains seem to be progressing over time, in all areas of my body. I also get other strange symptoms, such as regular eye irritation, extreme skin sensitivity, etc.
The thing that is most difficult for me, is learning how to accept random moments of intense pain/terror, and not being traumatized by it. Any human being with feelings and emotions would have great difficulty overcoming this.
I often feel I’m facing an oncoming freight train, with little to no answers. I know whatever the underlying condition is that is causing the SFN, is very dangerous – but because it is unknown at this point, there is no way for modern medicine to treat it. I hope and I pray.
I’m trying to teach myself to accept whatever will be, and to do my best to live in a state of prayer and empathy towards others. When I feel pain, I attempt to focus on empathy, and am trying to make each moment count in the best way I can.