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 🙂

10 thoughts on “Update – April 30, 2017”

  1. “cibinetide has the potential to become a transformative disease modifying therapy for sarcoidosis patients as well as for other diseases characterized by chronic inflammation and persistent tissue injury.”

  2. Hi Helio,

    Thank you for posting this very exciting news! I know you had posted about ARA 290 just several weeks ago, and so this news appears to be very timely.

    A 23% improvement in nerve fiber area in just 28 days looks to be very promising…particularly when no significant safety issues were observed. And, it seems to deal with the pain side of things too – so a double benefit! I wonder if this will also produce good results for other immune-mediated forms of SFN?

    I think this gives hope for people that the situation can one day be reversed. Hopefully the phases to get to FDA approval don’t take too long.

    1. Hi Helio,

      How have things been going for you? I hope that your pain has been manageable and that you are doing well.

      I had emailed Araim Pharmaceuticals and asked them when ARA-290 would become available. Someone in the company responded and told me it would take at least 3 – 4 years before it is publicly available. However, they said they would add me to a list for any upcoming clinical trials.

      On your end, you may wish to contact them about possible clinical trials in the future. And I’ll keep you posted about what I learn on my end.

      Thank you again for posting the information about them…this gives me a lot of hope, and I’m sure it does the same for others too!

  3. Hello Paul;
    The pain has calming days and terrible days, today is these days. Everything is concentrated in the feet and a little in the hands. The picture fluctuates fast, I think it triggered this time was a virose beginning today.
    I’m glad you took the initiative to get in touch with Araim. The ARA290 seems the most consistent thing so far. Hopefully you will be called for clinical trials. I have not yet seen any reports of adverse effects. For me who live so far seeing that repeated subcutaneous injections would not be eligible for a clinical trial. Otherwise he would offer it to me.
    I will start understandings to try hyperbaric medicine. We have here a high capacity oxygen camera. Who knows…

    1. Hi Helio,

      I’m sorry to hear that yesterday was a terrible day. I know what you mean, about the rapid fluctuations from moment-to-moment.

      Have you ever tried using a fan when that happens? I find fans to be somewhat helpful at times…maybe it has to do something with competitive stimuli. Also, if its concentrated in the feet, perhaps a reflexology device might help too? Or maybe cold / warm water?

      As for hyperbaric oxygen, will you try a soft chamber or hard chamber? From my understanding, the hard chambers are supposed to be a lot more potent. Anyway please let me know how it goes, I wish you the best with it!

  4. Hi Paul;
    About the chamber. Here we have the Hard (max. of 3.0 ATA). I have some challenges before how to make a colleague doctor prescribe it so that insurance costs or pay from my pocket. Make sure it will not be harmful to my myopia surgery done years ago. And I undergo hours inside the camera with other sick people. Anyway. We will see…

    As for the role of omega3 fatty acids in neuropathy, the article you posted is interesting. It is specifically about neuropathy associated with diabetic hyperglycemia, but I believe it will be helpful in other neuropathies. Ingiro fish oil capsules since the onset of neuropathy, may help, but does not bring the solution.

    Great week!

    1. Hi Helio,

      It seems that you found a high strength chamber. Hopefully the insurance will cover it. Where I live, this type of therapy is considered to be “off label” use, and so it is very difficult to get insurance to approve. I believe the out of pocket expense for a hard chamber was around $100 per session.

      Your sessions will last for hours? And I think you will need to do it daily over many sessions? Hopefully you bring some nice books to read while in the chamber.

      Yes, I just got some fish oil supplements, and will try using them. If they are of benefit, I’ll let you know.

      Good luck in the chamber! 🙂

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