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Thu, Feb 20 11:34pm · Small and Long Fiber Neuropathy – What's the difference? in Neuropathy
This is a related article found on the Oaklander site & may be pertinent for many of us. Problem is finding a doctor(s) willing or capable of this kind of testing…
Thu, Feb 20 11:24pm · Small and Long Fiber Neuropathy – What's the difference? in Neuropathy
Great article. Thanks
Check out the FaceBook protocol. John Bishop, the moderator of this site, recommended it and related that it has helped him. Last summer, in July, I was having significant problems with mouth numbness, burning tongue pain, and some difficulty swallowing. So much so that it prompted me to leave a wedding in Montana which was the final nail in the coffin for my marriage. But after worsening through the Fall, I continued gulping the Hemp & Fish oil as well as the other supplements and I began to improve. I still have symptoms but the throat issues have cleared up. I've had a recent set-back which I think is related to another attempt by me to eat beans & glutin. Now I'm pretty damn certain these are a problem for me and as Dr. Perlmutter, PBS neurologist says, leaky gut issues can cause PN. I have SFN but it may be that the underlying mechanism for these issues is the same for me. Who knows…just have to keep trial and erroring it.
Since you're well along on the Keto diet you may be interested in Terry Wahls, M.D., book, The Wahls Protocol. She was wheelchair-bound, did research & developed her Keto diet for auto-immune disorders & now she's back at full speed. She's endorsed by David Perlmutter, the neurologist often on PBS & author of Grain Brain. I was trying to go back to a vegan diet I was on 13 years ago but back then I could eat beans & glutin. So I'm sort of cruising back and forth between fruit & veggies & grass-fed meat & wild-caught fish. But Wahls book & diet look intriguing but challenging because it is so specific, and as I've mentioned before, I've just sort of run out of gas for learning so many new things while trying to pursue things that really interest me.
I have been plagued with digestive issues for over 20 years as well as the other SFN pain symptoms. It is depressing especially when the medical community offers little help. Diet seems to be a factor in my stomach & gut issues. Dr. Steven Gundry (I'm aware of how controversial he is) has pointed out one thing which is true for me and has helped eliminate gut pain. Apparently, foods that have lectins, especially beans not cooked in a proper manner, really cause me stomach and gut pain. Glutin bothers my joints. As for irregularity, I have not found an answer to this.
I relate to your daily thoughts of suicide. Pain avoidance is a natural tendency. I have had daily thoughts of suicide for long bouts at a time and it correlates with my pain and sleep levels. I do not take anti-depressants nor will I. Doctors and psychiatrists will recommend them but I would encourage you to look for other remedies first. I find that daily exercise like a walk in a beautiful setting, to be restorative and a good anti-depressant. I've always been an outdoors person and being in nature is a good anti-depressant for me. As I related previously on this board, my marriage dissolved because I was no longer a good partner. I was making my wife miserable which in turn, added to my burden. I did not want this to happen but I accept this was in our best interests. However, I have a dog who is loyal and a fountain of unconditional love. On my worst days, when caring for him is a bit of a burden, my love for him is such that I will do whatever it takes to make sure he is well taken care of. Taking the focus off of my difficulties even for a few minutes on my worst days is a good thing.
I hope you are retired or do not have to work for this disorder is detrimental to a good night's sleep. For me, a good nap, sometimes several, is what it takes for me to regain a more positive attitude. I wish I had more for you but I don't. Presently, I'm in one of my more quiescent periods relative to pain. It happens and I don't know why or how to influence it other than what I just related. Hopefully, you will find such a path.
Wed, Feb 12 3:52pm · Idiopathic Progressive Polyneuropathy: How to find a specialist? in Neuropathy
Are any of you SFN people trying the John Bishop/Facebook supplement program? He claims success with it.
I've been on it a while, very severe pain levels like you guys plus numbness moving from my feet up my legs and around my lips, left side of the face and inside my mouth, and then I started feeling better. My feet were still spotty with numbness but not nearly as bad, the burning split down my tongue I forgot about, and the nails in the ends of my fingers and numbness on the ends of my fingers I forgot about.
Recently, I tried to return to a vegan diet I was on 12 years ago. However, I had learned some time ago that I could no longer eat beans which was a mainstay of that diet and I had also stopped eating glutin. Since the supplementation program (forgot what it is called) my gut cramping and pain had cleared up. My bowels were improving although not normal. Encouraged, I began eating an Ancient Grain bread with no ill effects. In fact, since the supplementation program, my knuckles have felt oiled and they usually get sore when I eat glutin. Again, no return of swollen joints. Is it all the Hemp oil and fish oil?
Still encouraged and trying to return to a strict vegan diet, I began eating some bread not made from ancient grains and I also ate a can of beans. Big mistake. Terrible gut pain and I've got nails back in the ends of my fingers. My mouth was completely numb the last 2 nights with numbness on the left side of my face. Of course, the burning skin from head to toe never left me during my improvement but the intensity did lessen. However, after my diet experimentation, it has worsened and my last 2 nights have been sleepless.
So, I think I can attribute my improvement to the Bishop/Facebook protocol and food does seem to be a variable for me in my symptoms. There is a book I've picked up by Terry Wahls, MD, who regained her health through diet. She was in a wheelchair while she researched food as medicine and now she is cycling again.
I know, if you're like me, you're damn tired of trying this and then that, especially when you're not feeling well. Yesterday, I could hardly stay out of bed but I'm back on my gluten-free and lectin-free (Dr. Steven Gundry) diet so I'll see if I can get back to where I was…feeling better and optimistic.
Good luck all.