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SFN after a long walk

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Old 12-17-2017, 05:24 PM   #1
kmb sorefeet
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Default SFN after a long walk

Hello everyone,

I'm trying to get to the bottom of small fibre neuropathy, started about three months ago. It manifested itself as an area of pain/ numbness in my right big toe on the bottom pad. Pressure while walking caused brief pain on every step. Its progressed now and is also in my left big toe. I am concerned a lot about the progression, the horrible constant burning pain that is talked about on here and on other medical websites hasn't started but i'm almost waiting for it with immense trepidation. I am particularly fearful of it affecting my ability to work (I've heard others talking about this level of impact), my wife has MS and doesn't work.

I wondered about alcohol but the neurologist wasn't concerned really about that. We frequently indulged in a few glasses of wine in the evening.

This started very soon after completing a long walk. my son and I completed the Camino de Santiago, a 500 mile trek across Spain, in August. It was a special way of turning 50 for me. But every day I had immensely painful feet after about 15 miles so that the next 5 or 10 were a challenge. I'm wondering if this could be related in some way. Does anyone have a similar experience?

I have also Crohns disease, another possible factor, although it is quiescent.

Anyone's thoughts would be appreciated. How it may progress based on others experiences would also be of great interest.

I have stopped all alcohol, if that is a factor in my case (there seems to be individual variation in how much it might take), might it stop?

Hopefully there aren't too many questions here.

Thanks for populating this forum.
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Old 12-17-2017, 06:29 PM   #2
kiwi33
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Current evidence suggests that Inflammatory Bowel Disease, including Crohn's Disease, is not a significant risk factor for peripheral neuropathy https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3716471/ .
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Old 12-27-2017, 02:03 PM   #3
dogwalker
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Originally Posted by kmb sorefeet View Post
Hello everyone,

I'm trying to get to the bottom of small fibre neuropathy, started about three months ago. It manifested itself as an area of pain/ numbness in my right big toe on the bottom pad. Pressure while walking caused brief pain on every step. Its progressed now and is also in my left big toe. I am concerned a lot about the progression, the horrible constant burning pain that is talked about on here and on other medical websites hasn't started but i'm almost waiting for it with immense trepidation. I am particularly fearful of it affecting my ability to work (I've heard others talking about this level of impact), my wife has MS and doesn't work.

This started very soon after completing a long walk. my son and I completed the Camino de Santiago, a 500 mile trek across Spain, in August. It was a special way of turning 50 for me. But every day I had immensely painful feet after about 15 miles so that the next 5 or 10 were a challenge. I'm wondering if this could be related in some way. Does anyone have a similar experience?

Anyone's thoughts would be appreciated. How it may progress based on others experiences would also be of great interest.
Hi, Sorefeet. It's not possible to predict how your sfn may progress, because what happens over time is so variable. I believe there are others like me who've had it for years without becoming debilitated, and just learn to live with it. My sfn started after a foot injury from a long day of walking on hard surfaces in very unsupportive shoes. I had severe burning on my soles every night for a year, then it went away for a few years. Then the burning reappeared along with other symptoms, some painful and others just annoying. I've been able to manage the pain with amitriptyline, medical marijuana, and various topicals that I've learned about on this forum. So good luck with your investigation; keep educating yourself; and please try not to assume the worst.
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Old 12-27-2017, 04:26 PM   #4
ElaineD
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I have both Peripheral Neuropathy (which is large nerve damage in my legs) and small fiber neuropathy just about everywhere. My PN is so severe that I can only walk with braces and a walker, and not very far, at that.

Nothing I did caused this, and my Immunologist believes that my Disordered Immune System attacked and damaged both large and small nerves, as well as many other organs/systems in my body.

Unless a specific cause (alcohol, heavy metals, nerve impingement in the spine) that can be stopped, most neuropathies are only subject to treatment of symptoms. For example I take Gabapentin which controls my small fiber neuropathy pain/itching/burning, but doesn't cure or 'stop' any progress.

I tried high dose B12 (of a certain formulation) for 3 years, with no results. Over the years I've heard of most management methods. I've had every genetic test and have ruled out all the genetic causes.

It has been very difficult for me, to say the least.

Regards, ElaineD
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Old 12-29-2017, 07:30 PM   #5
kmb sorefeet
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Originally Posted by dogwalker View Post
Hi, Sorefeet. It's not possible to predict how your sfn may progress, because what happens over time is so variable. I believe there are others like me who've had it for years without becoming debilitated, and just learn to live with it. My sfn started after a foot injury from a long day of walking on hard surfaces in very unsupportive shoes. I had severe burning on my soles every night for a year, then it went away for a few years. Then the burning reappeared along with other symptoms, some painful and others just annoying. I've been able to manage the pain with amitriptyline, medical marijuana, and various topicals that I've learned about on this forum. So good luck with your investigation; keep educating yourself; and please try not to assume the worst.
Thanks for this reply. Glad to hear you have managed it
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Old 12-29-2017, 07:38 PM   #6
kmb sorefeet
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Quote:
Originally Posted by ElaineD View Post
I have both Peripheral Neuropathy (which is large nerve damage in my legs) and small fiber neuropathy just about everywhere. My PN is so severe that I can only walk with braces and a walker, and not very far, at that.

Nothing I did caused this, and my Immunologist believes that my Disordered Immune System attacked and damaged both large and small nerves, as well as many other organs/systems in my body.

Unless a specific cause (alcohol, heavy metals, nerve impingement in the spine) that can be stopped, most neuropathies are only subject to treatment of symptoms. For example I take Gabapentin which controls my small fiber neuropathy pain/itching/burning, but doesn't cure or 'stop' any progress.

I tried high dose B12 (of a certain formulation) for 3 years, with no results. Over the years I've heard of most management methods. I've had every genetic test and have ruled out all the genetic causes.

It has been very difficult for me, to say the least.

Regards, ElaineD
Hi Elaine

Thankyou for your reply. I'm genuinely sorry to hear about your problems. I can't imagine how difficult your situation is. Thanks for taking the time to respond to me
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