Update – January 23, 2017

This morning I had an appointment with a Rheumatologist.   She seems to share the view that my condition is likely autoimmune related.  She ordered an additional 24 blood tests.   She also told me that even if they all come out normal, it still wouldn’t rule out an autoimmune condition, as some of them are currently unknown, and so there is no test for them.

Over the past month, I’ve had a few new symptoms, which include dry and irritated eyes, as well as red patchy areas, which come and go on my skin.   Also, I occasionally get spontaneous small cuts on my hands, which has never happened to me before except since last month.   And I still continue to get occasional canker sores (which again, is a relatively new symptom).

I have to say, I am grateful that I do have some physical symptoms, which are relatively superficial in nature.   Because of this, I can photograph / document these things, for the doctors to see.

I have come to learn that showing physical evidence (whether it a nerve biopsy, or a picture of a physical issue) is critical to creating a sense of urgency among medical practitioners, and for them not to brush aside my symptoms as being “anxiety” related.

My pain levels due to the SFN continue to come and go in ebbs and flows, but the intensity of the pains seems to be increasing with time.   The past couple weeks has been in an uptrend from my average, but that could just as well reverse itself.  It can be quite unpredictable.

For pain relief, I continue to use ice packs (in small time increments), keep my windows open (to get cold blasts of air), listen to hypnosis, take warm showers, etc.   I am also doing things to keep my mind as distracted as possible.   I sometimes use GABA supplements as well as Bach Remedy Spray, which I find has the tendency to create a temporary calming effect.   A friend of mine recently bought me a diffuser for the holidays, I find using essential oils to be calming.  During times when it gets really bad, I do a lot of praying.   All these things help.

I also continue to do my best to keep my mind focused as positively as possible, and would like to think that regardless of however this unfolds physically for me, that spiritually I am growing and will continue to grow and head in the right direction.

2 thoughts on “Update – January 23, 2017”

  1. Thank you for your updates and I know exactly how you feel and how annoying it is when the doctors don’t believe you. I too have SFN, I was diagnosed in July 2014. I went off dairy and gluten for three months to see if that made a difference. the dairy didn’t but being gluten free did help and I am still gluten free as I found it does contribute to the pain levels but I do cheap every now and then. I have recently now been diagnosed with SLE. My neuro doctor told me that the SFN was an underlying factor in my Lupus. I am now working on a pain management plan to relieve some of it more naturally. Reading your updates made me realise I am not alone in this. so thank you

    1. Thank you very much for your comment. I’m so happy that these updates are helping you to not feel alone. I totally understand what a lonely journey this can be.

      I think it’s a very positive step for you, that you know what the underlying condition is that is causing your SFN. Hopefully as the Lupus condition is treated, your SFN symptoms can be managed.

      I am glad that going gluten free was helpful for you to reducing pain. There is an interesting book I’m currently reading called “Grain Brain” (by David Perlmutter, MD) which is on this topic.

      Wishing you the best!

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