Connect
Idiopathic Small Fiber Neuropathy Research
This coming June, I will make a journey to the Mayo Clinic in Rochester, Minnesota seeking answers to my diagnosis of idiopathic small fiber neuropathy. This will be my last major effort in getting some kind of relief. I was diagnosed about 5 years ago (skin biopsy) and have tried gaba, Lyrica and Cymbalta. I am currently taking 300 mg of gaba ( got as high as 2,400 but it’s useless) and 60mg of Cymbalta. I retired from the pharmaceutical industry after 40 years, and was 62 when diagnosed. My major complaint is burning feet, especially the bottom of my feet. I exercise routinely.
From my research it appears that there is not a lot of research on the etiology of neuropathy, but more on palliative treatment, and not much of that. Mayo is considered the #1 neurology hospital in the country. Does anyone have any first hand information as to what research is taking place there, if any?
Like
Helpful
HugInterested in more discussions like this? Go to the Neuropathy Support Group.
Connect
Hello @flag64, Welcome to Connect. I'm sorry to hear you haven't found much relief yet for your neuropathy. It can be very discouraging when you first start your journey trying to find something that helps. The best thing you can do to help is learn as much as you can about the condition and treatment options available. Here are my two favorites for learning more about neuropathy.
-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
@avmcbellar has mentioned digestive issues in another discussion here and may have some thoughts for you -- Stomach Neuropathy: https://connect.mayoclinic.org/discussion/stomach-neuropathy/
From my perspective I do believe diet helps neuropathy. I've also stopped drinking alcohol and try to limit the amount of sugar I take in along with eating healthy. I do think it makes a difference. What got me started eating healthier was after reading Dr. Terry Wahls story who has MS was able treat her symptoms and go from a wheel chair back to riding her bicyle -- https://terrywahls.com/about/about-terry-wahls/.
Do you mind sharing a little more about your diagnosis and treatments you've tried?
-
Like -
Helpful -
Hug
2 ReactionsWelcome @dot1, Your diagnosis sounds a lot like mine. I shared my story in another discussion here - Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/comment/310341/
Early on my diagnosis is 2016 I tried a lot of different things including essential oils for neuropathy like Frankincense and Myrrh but didn't find much relief. Now I do rub lotion on my feet and legs nightly to keep the skin hydrated which I think does help some. The Foundation for Peripheral Neuropathy lists a lot of different complementary and integrative treatments that you might find helpful - https://www.foundationforpn.org/treatments/.
What type of shoes do you find the most helpful for walking and comfort?
-
Like -
Helpful -
Hug
3 ReactionsThanks for that tip. I will take a look at that website.
I have a pair of SAS shoes that are the most support. I also wear a pair of Fila walking shoes, inexpensive but comfortable.
-
Like -
Helpful -
Hug
1 ReactionIn December on 2019 I started feeling numb in my calves, I’ve been having stinging, pins/needles pain along with numbness in my hands/feet for years but because I’m dealing with other medical issues of higher importance we weren’t addressing those symptoms until they were progressing in severity and moving up my body. Neurologist diagnosed me with autoimmune Small Fiber & we started the antidepressant, gabapentin and anti seizure route. I also stopped drinking, no caffeine and chocolate plus already eat very well since I’m a celiac. I have reintroduced a little caffeine lately (not a saint!) and walk 2 miles 5 days a week. That’s my info and thanks for the links.
-
Like -
Helpful -
Hug
3 ReactionsKeep a ete on winsanto
I recently started using Magnesium lotion in my feet and like what it’s doing!
-
Like -
Helpful -
Hug
4 ReactionsMy PN sounds like yours. Gradually toe, foot, shin numbness progressed over 6 yrs. No pain. No other health issues however blood work showed very high levels of B6. B6 in high levels can cause PN that does not just go away even when levels in blood return to normal. Have you had B6 levels checked? I unknowingly was taking too much b6 in melatonin without knowing this.
-
Like -
Helpful -
Hug
4 ReactionsI know that my Vitamin B level has been checked and all was well. I'm now 85 and have had this about 15-17 years. I have been told repeatedly by doctors that there is no cure and that's what I'm seeing others on this posting say too. I'm just thankful to not have pain with it! I have a feeling someday someone will discover what causes those nerves to die.
-
Like -
Helpful -
Hug
4 ReactionsYes I certainly hope they are trying to solve this. Not very reassuring to be told something is idiopathic i.e we don't know what causes it. I agree we are both lucky to have no pain. Even though I am 69 it has not affected my movement or balance so far. I do aerobics every day and jog 3 miles couple times a week. I believe that has helped a lot. Best wishes to you
-
Like -
Helpful -
Hug
1 ReactionI know this is a response to a post from last year, but I am new to this group. Do you, or anyone know of someone who has urinary incontinence due to SFPN? My research has shown that this can be caused by SFPN, but I have yet to connect with someone with this condition...And what might be done about it? Thanks to everyone for any help.