[Nina Richards]

Hi all,
I'm new here and thought I'd share my story. I was diagnosed with small fiber neuropathy in the soles of my feet in 2009, after a lengthy battle with plantar fasciitis (I'm convinced it's related). Its a cold-burning or stinging, and its pressure-related, so less standing= less pain. My doctor was very proactive and tried me on everything she could think of before referring me, including: fluoxetine, desvenlafaxine, nortryptilline, amitryptilline, Cymbalta, Lyrica, gabapentin, and Dilantin. The neurologist did all the nerve tests and blood work, and nothing came back. I saw her for almost 2 yrs, after which she told me we tried it all, and referred me to a pain clinic. On my own, I also tried acupuncture and Vit B shots.

I spent a lot of time sitting at home because my activities were reduced and soon I noticed a similar pain on the backs of my thighs- this time like a sunburn. Again- pressure related. This comes and goes depending on how much I'm sitting. I use a compounded transdermal cream that works pretty well for my thighs, but not so much on my feet. Oh the sick irony of not being able to either sit or stand comfortably! There is no escape.

I'm young and otherwise healthy. I am on anti-depressants and they are awesome for my depression. I used to be a runner and gym rat and had to give that up. Just wondering what else I can try on my own, or drugs to suggest to my doctor?

Look forward to chatting with all of you

[Kitt]

Welcome Nina Richards.

[Billylyne5]

Welcome, I also have a (working) diagnosis of SFN and have the same issues with my feet, I am waiting for a podiatry referral as I think I may have plantar facilitis too but I am struggling to manage the foot pain. I also have the sunburn type pain in various places, my hands and arms give me a lot of pain deep aching which seems to be spreading to my legs now.
I was taking cambamazipine which gave pretty good pain relief, but I have had to stop as it is effecting my liver ( according to the info this is not common) I am gutted that I can't take it anymore as I am now in a lot of pain. I also take gabapentin, I thought this was doing nothing and tried to reduce it but the pain got worse so it clearly is helping.
I also take duloxetine but I don't think that is doing a lot.
I have a course of 3 lignocaine infusions which gave great pain relief and I am waiting to have another course of these soon.
I also have given up the gym and running and am finding it all v frustrating.

[zkrp01]

Hi Nina, Perhaps you have been, but if you will lurk and read, there are a myriad of trials, mistakes, schemes and processes in play at any one time. As you have already been down the pain relief pharnaceutical road you might have to find your own way to deal w/ what is going on w/ your condition. I always preach patience for one reason. If you try something and it works, write it down. If something doesn't work, write it down. If you have three or four thing going at once and there is a change in symptoms, which is responsible? You will range from nightshade vegetables to the understanding of nutrient density. The links that are provided will range from preposterous to a V-8 moment that may help you. I also have been in a state where neither sitting or standing could be tolerated for very long. Your own degree of pain will dictate the urgency of your search. Let us know how you are doing, and if you keep a journal and something works for you, bet your bottom dollar that we want to hear about it!! Not a lot of uniformity w/ medications as everyone is different. What is good to some is useless to others,etc. Good luck, Ken in Texas

[AussieDebbie]

Hi Nina

I am in a similar situation to you. All the tests and nothing comes back, other than low on B12 and Iron. Mostly pain in the feet, however lately starting to get that sunburn feeling on my arms and legs. So, although I am on the same journey as you without success yet, things I'm trying are:

1. Gluten-free diet. (Gluten Intolerance can lead to Neuropathy).

2. Sugar-free diet. (I am not Diabetic either, but sugar & nerves don't play nice together).

3. L-Lipoic Acid (excuse the bad spelling please!). This seems to help some people, definately worth a try.

As Ken said, please keep us informed. Many of us get much more information from these forums than from our Doctor's. Docs can't be expert on everything after all, but we can be expert on this!

Hope you find peace soon. Lovely to meet you!! Just a shame it's not under more pleasant circumstances.

Debbie

[ger715]

Originally Posted by Nina Richards

Hi all,
I'm new here and thought I'd share my story. I was diagnosed with small fiber neuropathy in the soles of my feet in 2009, after a lengthy battle with plantar fasciitis (I'm convinced it's related). Its a cold-burning or stinging, and its pressure-related, so less standing= less pain. My doctor was very proactive and tried me on everything she could think of before referring me, including: fluoxetine, desvenlafaxine, nortryptilline, amitryptilline, Cymbalta, Lyrica, gabapentin, and Dilantin. The neurologist did all the nerve tests and blood work, and nothing came back. I saw her for almost 2 yrs, after which she told me we tried it all, and referred me to a pain clinic. On my own, I also tried acupuncture and Vit B shots.

I spent a lot of time sitting at home because my activities were reduced and soon I noticed a similar pain on the backs of my thighs- this time like a sunburn. Again- pressure related. This comes and goes depending on how much I'm sitting. I use a compounded transdermal cream that works pretty well for my thighs, but not so much on my feet. Oh the sick irony of not being able to either sit or stand comfortably! There is no escape.

I'm young and otherwise healthy. I am on anti-depressants and they are awesome for my depression. I used to be a runner and gym rat and had to give that up. Just wondering what else I can try on my own, or drugs to suggest to my doctor?

Look forward to chatting with all of you

I have spine issues; but also deal with PN including leg pain and burning of feet. A while back; Mrs. D recommended Morton Epsom Lotion (Magnesium Sulfate). Just massage lotion lightly. It really lessens the burning pain. I purchased mine at Walgreens for $8.99. It may be worth giving this a try.


Gerry

[Nina Richards]

Thanks for the welcome I feel I should explain the title of my thread...I have read a lot of posts regarding SFN that has spread from the original location, like from feet to ankles. I guess I am lucky in the sense that mine has stayed put for several years and fluctuates in a predictable pattern. I don't know what I would do if it spread!

I am trying to clean up my diet, and I'm definitely looking into supplements. I randomly came across a post here that listed a vitamin cocktail that I can't find now- alpha lipoic acid, folic acid, thiamine and vit E. Does anyone remember that post or where it is? I'm having trouble finding the B1 and ALA here in Canada, so I will look online.

My sunburn pain is greatly helped by the transdermal cream I use- if anyone wants the recipe, let me know

[baba222]

Originally Posted by Nina Richards

Thanks for the welcome I feel I should explain the title of my thread...I have read a lot of posts regarding SFN that has spread from the original location, like from feet to ankles. I guess I am lucky in the sense that mine has stayed put for several years and fluctuates in a predictable pattern. I don't know what I would do if it spread!

I am trying to clean up my diet, and I'm definitely looking into supplements. I randomly came across a post here that listed a vitamin cocktail that I can't find now- alpha lipoic acid, folic acid, thiamine and vit E. Does anyone remember that post or where it is? I'm having trouble finding the B1 and ALA here in Canada, so I will look online.

My sunburn pain is greatly helped by the transdermal cream I use- if anyone wants the recipe, let me know

Could you please, PLEASE share the transdermal cream recipe?

[Nina Richards]

Yes, of course.
You will need a compounding pharmacy, and it runs me about 75$

Amitryptilline 5%
Baclofen 5%
Carbamazepine 5%
- in a transdermal pain base.

I would love to know if this helps anyone else