Be Careful of Cuts, Even if You Haven’t Lost Nerve Sensation

A couple nights ago, I felt some pain sensations coming from the general area of my hand.  At the time I was watching TV, and just ignored the pain thinking that it was the SFN (Small Fiber Neuropathy) that I experience regularly.

A while later, I looked down, and realized I had a pretty sizeable, yet superficial cut on my thumb.  I am not sure where it came from, perhaps I had cut myself when I was washing dishes, and didn’t realize it.  After I found the cut, I put alcohol and a band aid over it.

I suppose the feeling of being cut must seem so normal to me, that I didn’t even realize when a real cut had occurred.   For some reason, I found this to be rather funny, and started laughing – perhaps due to the completely messed up nature of the situation.

I had read previously that people with SFN have to be careful about cuts, as they might not feel them occur due to loss of sensation.   However, I never once heard of having to be careful about cuts, due to confusing them with the regular pain sensations of SFN.   Yet, it makes total logical sense.  And so, I’ll do my part to adding to the discourse of SNF safety through this post.

Even if you have not lost sensation, if you have SFN it may be wise to check yourself regularly for cuts.

Update – December 13, 2016

Since my last update, my pain levels have been on the rise again.   And so I must learn to deal with the ebbs and flows.  When I feel the pain, it makes me appreciate that much more how it is like when there is little or no pain.

On the “search for a cause” front, I believe I have some new evidence that leads me to believe that there is a high probability that my condition is auto-immune related.

One of the oddities of my condition, is the ever-present state of shifting symptoms.   About a month ago, I started getting canker sores, which was an entirely new symptom.

At first I wasn’t sure what the difference was between a canker sore and a cold sore, and had myself tested for oral herpes.  This came in negative.

I did some further reading on canker sores,

http://www.mayoclinic.org/diseases-conditions/canker-sore/basics/causes/con-20021262

and they also appear to be linked with some auto-immune conditions.

I know that one of my neurologists had previously speculated that my SFN (Small Fiber Neuropathy) could have been caused by a “post-infectious immune mediated response”.

And I know since my problems first began, I have often wrote in journal notes that my body feels like its under attack.

And so, my theory is, that either the antibiotic I had taken (within a month of when my symptoms began), some kind of infection, or some unknown environmental factor had triggered an auto-immune response.

For the upcoming year, my goal is to continue to research underlying causes, and explore in great detail any possible auto immune component to this.  I realize to many extent, it is like searching for a needle in a haystack, and essentially I must self study this aspect of medicine.

One thing that gives me some optimism, is that when I look back a few years ago, when I first started experiencing these different symptoms – I had no idea what was going on.

The knowing that something is wrong, but not knowing what – I think is perhaps the most challenging from a psychological perspective.   Particularly when dealing with constant misdiagnosis from numerous doctors.   Yet despite this, I have persevered and am at a point where I have a much greater understanding as to what has been happening.

I do have many misgivings with our current medical system, as patients should not have to wage a constant battle for appropriate diagnosis, causes, and treatments.   Unfortunately when we are dealing with complex, multi-faceted medical issues, these seldom can be adequately addressed in a 20-minute consultation.

And so, we as patients must continue to be advocates for ourselves, and as long as we have the strength we must continue to search for answers.

Update – December 6, 2016

I am happy to report that my pain levels continue to be lower. I had mentioned this to be the case at the end of my last post, and this trend has continued. Though I can still feel ongoing low-level nerve sensations, as well as more intense pain flareups from time-to-time, and know that the process of nerve destruction continues at some pace, I have not felt the need to sleep with an icepack and generally feel somewhat better.  I’d say the quality of my life has been improving.   Occasional brainfog has been my most bothersome symptom over the past several days, though I feel I am somewhat accustomed to that.   I continue to read and immerse myself in different activities to counteract this.

A few things I think may be helping on the pain front:

  1. I’ve gone gluten free since around a month ago.   I’m not sure if its coincidental, but I think this may be helping. While I did not test positive for a gluten allergy, its possible that I have a sensitivity which inflames my system, serving to worsen the problem. I might research this further.
  2. I’ve been listening to the audiobook “The Brain’s Way of Healing”, and have been diligent in practicing one of the pain management techniques it delves into.   It involves visualizing the damaged area healing each every time you feel pain, in order to help foster new neural pathways.  I’ve also been doing hypnosis which I think is very helpful.  I plan to write a separate blog entry about in the near future.
  3. Over the Thanksgiving week, I took a vacation to Hawaii. I’ve noticed there is a constant, sea breeze there. I think this is very helpful for the nerves. Prior to this trip, I noticed when I take showers, pain seems to be a lot less during the showering process. I think this is the case, in part, because the process of showering bombards the sensory nerves, triggering pleasant signals which counteract or distract the mind from the pain sensations. I had been wondering if there is a way to replicate the shower sensation outside of the shower – and when I was in Hawaii I had an “aha” moment when experiencing the constant pleasant winds. In the future, I think I will invest in some fans I can setup where I live to try to simulate this.

Separately, as of several weeks ago, I decided to stop taking nearly all the supplements I had been taking that my  naturopathic doctor recommended. I suspected the dosages she was giving me were too high. Given that my pain has lessened, it makes me further question that road.   I think from each doctor I have seen, I have learned various tidbits of truths, but the path to gain a holistic understanding will continue to be my own journey.

Currently, I still take hemp extract CBD oil, along with GABA and Bach Rescue Remedy spray.   These help with anxiety – particularly the GABA supplement combined with the hemp extract CBD oil.   The Bach Rescue Remedy spray may simply be placebo, I don’t know.

As for medications, I have not used the Gabapentin that was prescribed to me. It is interesting, that the neurologists I have spoken with about this, pretty much tell me its safe to use, particularly in low doses. However, the FDA label has some pretty bad side effects in it, including 1 in 500 people becoming suicidal.   I’ve read some really bad patient reviews of it, including people who start hallucinating and hearing voices. I really don’t want to mess with a drug that could do that.   At the same time, about half the people who use it, seem to get a very good benefit from it, and so I don’t discount that. I just don’t think in my situation it warrants going down that path, unless my pain was at a 8+ level every day, and simply had no other choice.  As of today, this is not the case.

I have also read that Gabapentin may effect neuroplasticity, which is the brain’s ability to change and adjust to its corresponding environment, learn new things, etc.   Neuroplasticity represents my great hope at the moment, that I will be able to heal naturally. I do not want to do anything that could potentially close this window of hope.

Given that I feel my condition was likely triggered in part by an antibiotic I had taken a few years ago (which I wrote extensively about in my Oct 3 post), I remain ever-the-skeptic when it comes to pharmaceuticals, and am well aware of the unintended consequences that can occur when the risks are downplayed or glossed over.

And so, I continue down this path, in hopes that the pain will continue to be at low and manageable levels – and will appreciate each and every moment when it is 🙂