Update – April 30, 2017

For the month of April, I’ve had some more tests, but little new information.

Earlier this month, I was tested by my neurologist for the SCN9A, SNC10A, and SCN11A genes, which he said can be a cause for SFN.   These came in negative.

I also took an autonomic nerve test, which I am still awaiting the results on.

The next big event for me will be my trip to the Mayo Clinic at the end of May.

With that said, my pain levels have varied, though at times the intensity of the “electric shock” sensations has really kicked up during some of the episodes, to the point where it made me consider the possibility of using gabapentin.   However, I have always resisted this urge, despite the barbarity of such moments. I’m always afraid of the unintended consequences of pharmaceuticals. And I don’t want to go down a rabbit hole where there is ambiguity about what symptoms are being caused by the condition versus what are side effects of medications.  Nonetheless, I do know that if pain conditions are severe enough in intensity and duration, every person is going to have a point where they are going to need to seek relief.

With that in mind, I had the following thought / observation on the subject of pain, which I think makes a great deal of sense:

During moments when my symptoms seem to be either new, or worstened in intensity, I imagine back to how I felt a year ago. I remember specifically late one evening last year, when I felt like my body was on fire.  It was the first time I had felt this new sensation on this level of intensity. For a couple hours I was truly panicked by this, rubbing ice packs all over myself, wondering how on earth I would be able to indefinitely deal with this.   And it took me months of episodes, where I would feel these sensations for periods of time before the panic element would begin to wane.   Today, the same type of situation would seem a lot more tolerable to me, because I have grown more used to it.   And so, began my personal theory of “pain tolerance”, which says that if a baseline of pain exists for long enough, eventually the mind has a way to adapt and adjust to this “new normal”.

The key to this, is that the pain has to progress at a rate that doesn’t exceed the progression of tolerance.   If the rate of pain does exceed the progression of tolerance, it is going to feel like hell for a period of time, but eventually the tolerance will catch up.

Anyway, this is simply a theory that I have about my body. Each person is different, and circumstances can change.

I also realize that this idea seems to go against what I have read about neuroplasticity: Neurons that fire together, wire together. And so, pain, should create more pain, unless there is a neuroplastic intervention that rewires the circuitry. I take this into consideration too and factor that into my self-treatment regimine.   I often do visualizations when I feel pain, to try to utilize neuroplasticity.  Perhaps at some point in the future, I will be able to reconcile both ideas through my experiences, to refine my own personal theory.

I’ve also been exploring with more depth the subject of neuro-modulation. I always carry around a small handheld fan with me.   I’ll discretely set it up if I at a social outing, etc. I know I’ve written about this before, but I find having a constant pool of air blowing over me to be helpful (just as a warm shower helps).

Also, last year I had purchased a Quell unit (similar to a TENS device). I stopped using it during the winter, as it was harder to wear with my clothes outside. However, I recently started using it as I felt more intense “electric shock” sensations, and found this device to be somewhat helpful at reducing this. I’ll post a more in depth review in the future, once I have months of experience working with the device…as perhaps my limited experiences could have been coincidental or placebo effect.

In addition to this, a couple months ago I started experimenting making my own skin salves. I recently perfected my recipe, which is designed to: Have a cooling effect, reduce pain, and moisturize. I found since using this, it does help somewhat – particularly for cooling (since it has menthol in it) as well as moisturizing (as the base oils are 1/2 coconut, 1/2 olive).   There are about a dozen herbs I had researched that I added in it.  And so now I’m applying it daily.

I continue to use a diffuser. My favorite essential oil thus far is Eucalyptus. I find lavender to be good for anxiety.   I also keep a little bit of oil in a small tube with cotton, so that way if I’m outside of home and want a quick burst of treatment, it is there for me.

And last but not least, I find medicinal herb for sleep to be extremely helpful.

And so, that is it for now. Hopefully this information will be of value for those who read this.

Wishing everyone a life filled with less pain and more joy 🙂

Update – March 29, 2017

A few days ago I had an appointment with another neurologist, of whom I had waited 6 months time for.   He is the 4th neurologist I have seen thus far.   He told me there were a couple blood tests that haven’t been done, and so is having me take them. He also referred to do an autonomic nerve test in the beginning of April.   I think this is very important, so that I can understand better what is causing periods when I get dizzy.

I’m planning to go to the Mayo Clinic in a couple months time. And so, by the end of that trip, my diagnostic workup should be totally complete.   Either a treatable cause will be found for the SFN, or it won’t.

As for good news, my pain levels have been lower over the past week.   I also feel I have continued to learn the importance of distracting my nerves – the most painful periods tend to be right before I fall asleep / when I’m in a super relaxed state. The simple act of keeping a fan on or taking a warm shower really helps.    I’ve been using a medicinal herb that I have found to be extremely helpful, and it makes the nights a lot more bearable.

I’ve also been thinking, since the body has natural ways of creating its own “feel good” chemicals, I should focus heavily on that through each moment.   Focusing on activities that foster my sense of purpose, spiritual growth, empathy, humor, curiosity, appreciation, etc. all I think are helpful with this.   I plan to write more about this in the future.

The Illusion of Choice – Fate Versus Free Will

“If you believe, you can achieve!” proclaim the self-help gurus. I believe such a statement is true for a certain percentage of individuals, in a certain number of situations.   It can be a great motivator for people who have CHOICES, to make the best possible choices they can in their lives, aligned with their values and where they seek to go.

However, as with nearly all things in life, there are two sides to this coin.   This proclamation of belief, can also serve to lessen one’s empathy towards others.  After all, if one doesn’t achieve, it must be because one hasn’t believed and has set their expectations too low due to this. Under this mantra, altering one’s situation is always a matter under one’s control, starting in his/her mind.   I believe there are many real-world situations that prove this type of thinking to be very naïve, when applied to all situations.

Free will, in any situation, requires choice. When we find ourselves in situations where our choices are limited, our free will becomes limited. Let us take this to an extreme to illustrate. Take a homeless man or woman who has severe schizophrenia. Having been abandoned by both family and society, without the mental abilities to function in a job, what choices do he/she have in life? The answer simply is none.   He/She bears a fate that the ordinary person bears the fruits of, for genetic evolution requires a constant throw of the dice.   The idea of choice and “free will” for the individual in this set of circumstance is a mere illusion, and yet there are some who will look down on such people as being crazy, lazy, or a simple nuisance to society. These people live at the mercy of others, and if we abandon them as a society it is because of our free will, not theirs. Their material situation is a reflection of our collective beliefs and actions, not the other way around.

At the core of the “If you believe, you can achieve!” mantra, lays the age-old question of “Fate versus Free Will”.   It is has become popular to believe that we “make our own fate”.

Personally, I believe that in order for free will to exist for a given situation, there must be CHOICE of some sort.  This choice must be genuine, and not coerced. For instance, if a man steals food in order to feed his starving family, did he really have a complete choice in the matter?

As any casual player of chess will know, you often find yourself in positions where you are forced to make a move you did not wish to make, in order to keep the game going. No matter how much one may exercise the power of belief and perception in such a situation, the pieces and their positions on the board are what they are – and one must make the best of the situation for what it is.

One must also recognize that there are moments when matters of fate and free will are going to get blurred, and as a result, we must err towards a compassionate view of situations, including ourselves, regardless of the outcomes.  Perhaps we do something we wouldn’t ordinarily have done under a different set of conditions, but it was the best possible choice under the set of circumstances that existed. It is important to look at things from the vantage point of compassion, for both ourselves and others.

I decided to write about this topic, because I believe that dealing with a chronic pain issue has given me some deeper insights and perspective into this. I have always been about positive thinking, and the power of making the best choices.   Yet, I can now see some great limitations to this type of thinking, as well as the harm it can do, given certain sets of circumstances.

One of the humbling things about life, is that when something goes wrong with our bodies, we don’t always have control over the situation, regardless of our beliefs.   Therefore, we must adapt our thinking and our expectations to align it with our new reality. To do otherwise, would be to try to paddle upstream.   Working against the current of life is seldom the path to healing.   I know when I have tried to do this, I found myself feeling depressed and saddened.

When our bodies are in a healthy, pain-free state, we often can’t conceive the notion that matters of choice and free will hang by a tiny thread.   For when we are in a state of chronic pain, many of these choices evaporate.

Back when my problems first began, I noticed that periodically, I would have moments where I felt in complete emotional turmoil. These moments would last, usually 20 – 30 minutes, before subsiding. These waves would typically come in after dealing with bouts of pain and SFN-related sensations.   I still feel them today, though with less frequency now that I know and understand the mechanics of what is occurring.   Nonetheless, if I am having an intense moment of pain, this feeling can still arise.

I often find myself going into a deep state of prayer and surrender during such moments. I have no power over the situation.   It is a matter I give over to God.

I was reading that the part of the brain that processes pain is right next to the area of the brain that deals with emotion. And so, it is not surprising that the two affect one another. When we feel pain, our emotions are more likely to fluctuate – and we feel less happiness and joy.   To a great extent, this is something not under our control – and it is not a matter of “free will”, since no sane person wills chronic pain and it’s emotional ramifications on themselves.

To further analogize in the most simplest of ways, it is seldom that a child is happy that he/she cut his/her finger, or that a person would feel happy to be severely injured in a car accident. If a person felt happy in such a situation, they would be called a “masochist”, as the response would seem wholly unnatural.

In these analogies, the instinctual emotional responses to these underlying physical situations are not simply a matter of belief being guided by free will.  These responses are, in large part, the result of millions of years of evolution. Physical pain signals a threat to our survival, and so emotionally the body is going to respond in kind. We have no control over this, any more than we have control over the whole process of evolution from which our bodies emerged – this is a matter of fate.

I think it’s important, when we apply certain dogmas to our life, such as “If you believe, you can achieve!” or “we make our own fate”, that we must also be mindful that such philosophies will not work for everyone under all conditions. Therefore, we must always be careful to consider the other person’s set of circumstances, and to attempt to put ourselves in that person’s shoes, before prescribing solutions.

We also must always be humbled by the ever-changing circumstances that life can throw at us, and embrace things with an open and compassionate heart.

Update – March 1, 2017

Today I met again with my rheumatologist. She said pretty much all the tests she can do, have been done.   She referred me to an ophthalmologist who can check for Sjogren’s, though she told me, based on my blood tests, its 99% ruled out at this point.

There appears to be consensus among the 3 neurologists I have seen, that the next step would be for me to go to the Mayo or Cleveland Clinic.   And after that, there is no more that can be done.

On the positive side, the past week has been quite good, and my pain levels have been on the low end.   I think I’m developing a good understanding of my own limitations, and what activities I am able to do without over-exerting myself. I do know the cycles seem to go in ebbs and flows, and so I’ll seek to better manage these cycles to the best of my ability.

Given the limitations of modern medicine, I’m trying to embrace more the spiritual side of healing, and am shifting this towards my primary focus.   I’ll write more about this in future entries.

Update – February 11, 2017

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.

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.

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 🙂

Update – November 23, 2016

A few weeks ago I had an appointment with my neuromuscular neurologist.  He told me the tests I took to find an underlying cause for my SFN (Small Fiber Neuropathy) all came in normal.  He ordered one final test, which he said is an extreme long shot.  Aside from that, he knew of no other tests that I should take.  He said that my case is, with almost certainty, “idiopathic”, and that the only thing I can do is to start taking medications to deal with the pain.   I’m putting off taking pharmaceuticals for as long as possible, and plan to create a separate blog post in the near future on this issue.
 
When I asked him about a “Paraneoplastic Panel” which my Skype neurologist had told me about, he told me that I had already taken that.    Given that I am unsure who is correct (since both Doctors reviewed all my records), I’ll seek out a third opinion on this.
 
Another issue I brought up with the neuromuscular neurologist, are sensations I often feel in the area of my heart.  I’ve brought this up with other neurologists, who either overlooked this, or told me that it is a normal part of having sensory neuropathy and won’t do any harm.   This particular doctor told me he never heard of anyone experiencing that with SFN.   When I asked him if it should be looked into further, he basically told me the issue is just anxiety and that I would be better off going to a psychologist / psychiatrist to deal with that (which of course, is something I have done for the past couple years since my whole issue first started).   
 
I do find it frustrating that sometimes different doctors will tell you different things, related to the same issue.  And so, there appears to be either a lack of standardized knowledge, or a lack of consensus when it comes to SFN.
 
Another difficult thing, is that since we are kids, we are taught to “listen to our bodies”.   In my case, if I listened to my body, I would be in the ER frequently.  And so, I’ve learned to do the opposite, and to ignore what my body is signaling.  Without learning to ignore, it would be difficult to function in day-to-day life.
 
If this matter is not entirely “anxiety” and can’t be explained by Small Fiber Neuropathy, logic would lead me to consider the possibility that my neuropathy might be affecting some of the automatic nerves.  In the future, I will continue to ask about automatic nerve testing.
 
With that said, over the past couple weeks my pain levels have been somewhat lower overall, which I am happy about – though I do get unpleasant flare-ups.  Also, sometimes my memory seems to be a bit foggy.   I find that getting good sleep, and taking frequent naps, is helpful.  I’ve also gone gluten free, and have been drinking fresh juice, eating salads, etc.  
 
I’ve also began the audio book “The Brain’s Way of Healing” by Norman Doidge, which talks about the subject of neuroplasticity and how the brain can use this to control pain.  It is a follow up from the book “The Brain that Changes Itself”, which I felt was exceptionally well written.  Sometime in the near future I am planning to create a book review section of this website, where I can go into further detail on some of the books related to this subject.