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Old 11-24-2019, 06:13 AM #1
kmb sorefeet kmb sorefeet is offline
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Default Small fibre neuropathy progression.

Hi all, I’m hoping someone here can help with my question. I’ve had SFN for just over two years. No cause identified yet although I occasionally drank too much alcohol. Neurologist didn’t think that was significant. Anyway I stopped all alcohol consumption as it is known to exacerbate nerve problems. It’s remorseless in its progression. Hands and feet are affected. My feet are very cracked and dry. But the pain is the thing. 350 mg lyrics and 70 mg amitryptiline are my medications. The question is, does this always continue to worsen? My neurologist and GP are not helpful in answering this. I want to know what the future may hold. Ian 52 with a family and financial decisions we make may well need to factor this in. I’m struggling at work, especially working long hours on standby. What’s the endpoint for the pain? Can anyone advise? Good luck to all.
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Old 11-24-2019, 06:35 AM #2
neuro74 neuro74 is offline
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I am afraid nobody can tell you. It can stay stable, it can get worse and in rare cases it can even improve over time. Depends on the kind of damage done to your nerves. And it depends on whether the underlying cause is eliminated or not. If it is ideopathic, it is by definition not really possible so i think nobody can tell you for sure whether it will get worse or not. I really pray for you that it stabilizes and even gets a bit better.
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Old 11-26-2019, 09:55 AM #3
kmb sorefeet kmb sorefeet is offline
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Quote:
Originally Posted by neuro74 View Post
I am afraid nobody can tell you. It can stay stable, it can get worse and in rare cases it can even improve over time. Depends on the kind of damage done to your nerves. And it depends on whether the underlying cause is eliminated or not. If it is ideopathic, it is by definition not really possible so i think nobody can tell you for sure whether it will get worse or not. I really pray for you that it stabilizes and even gets a bit better.
Thanks for your reply. In a way I hoped it was a little overindulgence in alcohol although the neurologist thought not. Then by eliminating it completely I would have seen some stabilisation. But it’s just getting worse. My fingers are now affected and Icant remember what it’s like to walk without pain anymore. Ism worried about further worsening. Thanks for your thoughts. Best wishes to you too.
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Old 11-26-2019, 03:00 PM #4
numbfoot numbfoot is offline
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Your situation is similar to mine & you should be making some preparation to allow for it.
I have managed to ignore the discomfort in my feet most of the time.
I try to avoid wearing any kind of footware. I have several pairs of slipersocks which I wear most of the time.
I still have my drivers license, but let my wife do all the driving.
If I do have to drive it's barefoot so I can feel the pedals.
My hands are the greatest issue now.
Simple things like writing, eating & performing ablutions become difficult.
All this means I’ve had to give up any form of work, I certainly wouldn’t employ me.
I have been bludging on my wife for the last five years until my super kicked in at 65
I still manage to do all the cooking & baking. If I take my time I can still do most things.
The family are amused by some of the things I modified around the house to make it all work.
Ive added a link below to my main thread if you want to see my history
Idiopathic Peripheral Neuropathy
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Old 11-29-2019, 04:49 PM #5
kmb sorefeet kmb sorefeet is offline
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Quote:
Originally Posted by numbfoot View Post
Your situation is similar to mine & you should be making some preparation to allow for it.
I have managed to ignore the discomfort in my feet most of the time.
I try to avoid wearing any kind of footware. I have several pairs of slipersocks which I wear most of the time.
I still have my drivers license, but let my wife do all the driving.
If I do have to drive it's barefoot so I can feel the pedals.
My hands are the greatest issue now.
Simple things like writing, eating & performing ablutions become difficult.
All this means I’ve had to give up any form of work, I certainly wouldn’t employ me.
I have been bludging on my wife for the last five years until my super kicked in at 65
I still manage to do all the cooking & baking. If I take my time I can still do most things.
The family are amused by some of the things I modified around the house to make it all work.
Ive added a link below to my main thread if you want to see my history
Idiopathic Peripheral Neuropathy
Thanks numbfoot for your reply. I’m sorry to hear your situation. I will read your history. Do you have pain? My hands are affected now. So far I’m experiencing the finger pad contraction and pain when I use keys for example. No numbness or motor nerve problems. So far.
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