Update – July 12, 2018

It has been a while since I last posted on this blog. I reached a point where I felt that there is little I can do about this situation, and so part of me didn’t want to focus on this any more than I have to on a day-to-day basis.  With that being said, I do think my previous posts have had a great value. Some of the commenters are extremely knowledgeable, and had brought information to my attention that I had not previously known.   In particular, was Helio’s post about ARA-290, which appears to be a couple years away from coming to market. Since then, I’ve also read about a clinical trial for Pirenzipine, which is also an interesting development.  There is also a clinical trial for IVIG happening now too. The more I have researched these sort of things, along with the future trajectory of Artificial Intelligence and big data, the more optimistic I am that we are living at the tail end of the dark ages when it comes to understanding how the brain and nervous system functions.   And so, with my full heart and soul, I simply no longer believe that these sorts of conditions will be “life long” and in fact, within a few years great breakthroughs will be made.   And so perhaps from now till then, any pain I experience is meant to teach me things about life that I might not have otherwise known.   And it continues to make me acutely aware of the struggles others have – and to try to always look at the whole person (including myself) with a much greater sense of compassion.

Regarding my pains – again it comes and goes. There have been two developments on this front, one positive, and the other negative.   I know a year or so ago, one of the most disturbing pains I felt, was a feeling as though my skin was burning. Because of this pain, I often slept with ice packs, and felt uncomfortable traveling a long distance without this. Today, I can still feel these burning pains. However, over time, it appears to have become more like background noise – as my mind seems to process it a bit different. It still exists and I know it’s a problem, but I don’t panic over it.   If it gets too intense, I will use a fan to help ease the sensations.   I think my pain tolerance threshold is a lot greater today than it once was.

Similarly, with the stabbing and shooting sensations – I am usually not awakened by these things at this point. I still feel them regularly, but can put myself in a relaxed state despite what I am physically feeling.

And so for the negative development – I’ve noticed over the past month or so, when I walk, sometimes I will feel a lot of nerve pain in my left foot in particular. While it doesn’t prevent me from walking, it can be quite uncomfortable and unsettling at times.

I recently purchased special gel socks, which seem to be helpful.   I plan to experiment with capsaicin cream, and also lidocaine cream, to see if any of those help.   I’ll provide an update about this, as well as any other experiment, in a future post.

With that being said, this pain is intermittent. When I don’t feel this pain, I do feel a great sense of joy. It also reminds me what a blessing it is to take each step with good feeling, and to never take that for granted.

About a month ago I started taking 300 mcg of Vitamin B1, I have since upped the amount to 600 mcg. I had read lots of good reviews on this relating to neuropathy, and also had read a study on it. I have since also incorporated 1500 mcg of B12.   I think the B1 has helped elevate my mood and give me some more energy. However, I am uncertain it has had an affect on the nerve pain. It is difficult to tell – but I’ll continue taking it and see if there is a cumulative effect.

In a couple months, I plan to meet with my local neurologist, and will ask to retest for the alpha-3 ganglionic AChR antibody I had tested positive for, per the recommendation of my primary neurologist. Regardless of the results from that test – it is presumed the cause of the SFN is immune-mediated / autoimmune.

In addition, I also recently started using a heart tracker. I have noticed that sometimes (though not always) my HR increases considerably when going from resting to standing.   I know sometimes I get light headed, and feel an abnormal sense of stiffness through my body – which goes away once I start moving around. And so when I have my next appointment, I’ll be sure to print out the tracked HR data to see if it means anything.

And so that is it for now.

My apologies for the delay in responding to some of the messages that were left here, and will do so shortly.

Wishing everyone low (and hopefully no) pain days 🙂

Update – September 29, 2017

Since my last post, I have not seen any doctors. I am planning to have a final consultation with the neurologist I most trust next week.

With that said, I continue to feel nerve pains on an on-and-off basis. It can be quite intense at times, but at the same time, it comes-and goes, moment by moment. I do have moments where I feel complete fine, and others that are less so. It does not affect my ability to physically do things, and for that I am very grateful. People I interact with would never know I have a problem unless I told them. Nonetheless, it can be challenging to deal with, and so my mental strength has been building with time.

The worst is always when I’m trying to sleep, or when my body is getting into a relaxed state. I tend to feel nerve firings most in this circumstance. At the same time, I feel my mind has, in some way, adapted to the situation – and it interferes with my sleep a lot less so now, despite feeling the nerve firings going into sleep. My pain tolerance threshold seems to have increased quite a bit with time.

I do get regular nerve sensations that fire in the area of my heart. I think a year ago, this would cause me the most amount of worry, as it can feel very ominous. I’ve been told by multiple neurologists that this is a purely a sensory sensation. While I still feel this today – perhaps more regularly and perhaps with some more intensity, at the same time my mind is quite at peace with it. And every time my nerves fire in this manner, I try to further the process of my mind becoming peaceful with this situation.

Another symptom which is somewhat more prevalent, is that sometimes if I scratch my skin, I can feel the scratch linger for many minutes afterwards.

While overall I feel my anxiety levels are as low as they have been in a while (albeit, this fluctuates), dealing with the constant overhang of this nerve problem is one that I simply will have to continue to learn to live with and adapt to, to the best of my ability. I do various mental exercises to help to evolve my perception of pain. And, every day / block of time I get through, where the symptoms are moderately low or minimal, I celebrate as a tremendous success.

And so that is it for now. Wishing everyone a low (and hopefully no) pain day!