Hi
@Cort, Hi Everybody,
I've had burning pain sensations on my skin for many years, mostly on my torso, but in other places as well. They would usually last 3-4 days or so, and then gradually dissipate. I hadn't had any episodes for a while until about a month ago. I then had an episode that gave me some insights as to what has been causing it all these years. In short, these episodes turned out to be
shingles outbreaks. Here's my story.
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About a month ago, one of my typical pain sensations began after not having experienced it for probably over a year. Unfortunately, it hung on much longer than normal, and even began to spread to a wider a area than normal. After about a week, I experienced my first ever shingles outbreak in the area where the pain started.
As I began to learn what I could to treat this very painful (and itchy) condition, I discovered shingles outbreaks don't always break through to the surface of the skin, but can cause pain and inflammation just below the skin surface. It was then I became 90% convinced that the surface skin pain I'd experienced for years was in fact shingles outbreaks.
So what had precipitated this new outbreak? In short, the flushing effect from
niacin. I had started supplementing with niacin (about 250-500 mg/day) just before the painful sensations began to emerge. While supplementing with it, I was reading a book entitled,
"Niacin, The Real Story" (very enlightening book BTW, especially the documentation on its use for treating shizophrenia (with about an 80% cure rate), and MANY other conditions.
As I was struggling to treat my shingles, I read in this book that niacin (paradoxically) is very helpful for some people with psoriasis (and many other skin conditions), and greatly exacerbated psoriasis in others.
It was my aha moment, when I became convinced my shingles outbreak--followed by my treatments being minimally effective--was the result of niacin exacerbating my pain, and extending the duration of the outbreak. -- I now think it's more accurate to say that it was the "flushing effect" from the niacin that was the problem, not the niacin itself.
As soon as I stopped the niacin, the pain immediately began to decrease significantly. After the skin lesions had healed up about 90%, and were fairly unnoticeable, I decided to do an experiment, and take just a small 100 mg dose of niacin, and see what happened. Within hours, the pain and itch were getting progressively worse. (Me and my experiments!
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The lingering question I have is whether the niacin initiated the burning pain to begin with. Whether or not that's the case, I feel quite certain it transformed the surface skin pain into a full-fledged outbreak of shingles--an experience I hope never to repeat. I should mention while I'm at it, that one of the favorite natural therapies people with shingles use is
apple cider vinegar. For me it was disastrous, and only exacerbated the pain.
So, another example for me of how ME/CFS affects my body. I believe my dysfunctional immune system allows for my surface and sub-surface shingles outbreaks, and my neurological sensitivity made my use of niacin and apple cider vinegar untenable. It would make sense to me that other pwME/CFS could be facing a similar situation.
BTW, the niacin I was supplementing was actually very helpful in a number of ways, especially in the way it acted as sort of a natural benzodiazapine. Its associated calming effect helped me relax and sleep better, and seemed to take an "edge" off during my day. I'm currently substituting the niacin with niacinimide, which doesn't have the "flushing effect" of niacin. So far, it doesn't seem to have the same degree of calming, though I haven't yet experimented with higher doses.
So, there's my story, Hope it wasn't tooooooo long.
Best to All,
Wayne