I feel for you bc I have the neuropathy & there is no reason for it. I do have a disk that is pressing against the other & a bulging disk. I wonder if that can be contributing to my pain. Even with 900 mg of gabapentin, it doesn't help? I don't know what to do either. I'm scared to try Lyrica or Eleval. Does anyone know about the med Toparmax. My dr. mentioned it the other day but it looks like it has a lot of side effects. Has anyone taken it & have you had side effects.
I am new to the Connect scene and only just learning that there are so many people out there with similar situations. I am 48 and have been dealing with issues in both feet for at least the past year. It started with a burning sensation in both feet, mostly at night. My foot doctor is only just at the point of saying that my symptoms match a neuropathy diagnosis. We just can’t figure out a cause. I had Tarsal Tunnel surgery on both ankles but it hasn’t helped.
I have also noticed that driving is becoming an issue. Cruise control helps but it scares me to think my foot is going to cramp up while I’m on the highway.
Has anyone else had a doctor suggest that this may be a genetic condition? I’m not sure how it helps but I’m just wondering.
Just want to say that hearing other people describe the same symptoms that I have is such a relief! I was really starting to wonder if I’m losing it...especially after the surgery didn’t solve all my problems. Thank you!
Tammy
I live in central Oregon, where there are great doctors, but for more in depth testing, my neurologist referred me to Oregon Health Sciences University hospital in Portland. One of the tests was a DNA, and there were indicators of a hereditary connection. I already assumed that, since my father and all five of my siblings have had neuropathy.
Driving can be painful. I'm just glad that someone invented cruise control.
I have idiopathic small fiber peripheral neuropathy. Driving certainly does make my symptoms worse.
Lois6524, did you mean that driving does not cause peripheral neuropathy? If so, I agree completely. However, driving is among the many things that make the symptoms worse. Cold weather, pressure from simply wearing shoes and socks. my mood, and many other things can make me feel worse.
Driving became so difficult that we recently sold our RV. My wife doesn't particular like driving it, and I found that at times I was driving barefoot.
I had tarsal tunnel syndrome and now have neuritis/neuropathy in both feet and I have very similar symptoms. Car trips defiantly aggravate my feet causing severe burning and I thought I was crazy because my mood also effects them. Walking too. Usually it’s afterwards that I’m “uncomfortable”. Has anyone heard of “ablading” the nerves for relief
I had tarsal tunnel syndrome and now have neuritis/neuropathy in both feet and I have very similar symptoms. Car trips defiantly aggravate my feet causing severe burning and I thought I was crazy because my mood also effects them. Walking too. Usually it’s afterwards that I’m “uncomfortable”. Has anyone heard of “ablading” the nerves for relief
I think you mean ablating the nerves, which means removing them, by means of burning with electricity, chemically, etc. This is not possible with SFPN, as the problem involves vast numbers of small nerves, and anyway, even if possible, would probably be counteractive. Large nerves can be ablated, but do you really want to cut off sensation to your whole foot?
BTW, I find that my recently developed metatarsalgia (pain in the ball of my right foot due to degeneration of the joint, which is an orthopedic problem separate from the SFPN) is making the neuropathy worse in that foot. My podiatrist advises me to wear orthotics, but I can't wear shoes for very long because of the neuropathy. I ususally wear flip flops or go barefoot, which is bad for the metatarsalgia. Lots of fun!
I find that almost anything can effect PN, which makes it very hard to know what to do to make it better.
I think you mean ablating the nerves, which means removing them, by means of burning with electricity, chemically, etc. This is not possible with SFPN, as the problem involves vast numbers of small nerves, and anyway, even if possible, would probably be counteractive. Large nerves can be ablated, but do you really want to cut off sensation to your whole foot?
BTW, I find that my recently developed metatarsalgia (pain in the ball of my right foot due to degeneration of the joint, which is an orthopedic problem separate from the SFPN) is making the neuropathy worse in that foot. My podiatrist advises me to wear orthotics, but I can't wear shoes for very long because of the neuropathy. I ususally wear flip flops or go barefoot, which is bad for the metatarsalgia. Lots of fun!
I find that almost anything can effect PN, which makes it very hard to know what to do to make it better.
The Baxter nerve is very small, and only affects a small part of the inside of the heel. I don't think there is such a thing as PN exclusively of the Baxter nerve.
Small fiber PN is generally widespread, so it would be impractical to ablate large nerves. I don't think this technique is used for small fiber PN. It may be for other forms, but it is used infrequently.
I am new to the Connect scene and only just learning that there are so many people out there with similar situations. I am 48 and have been dealing with issues in both feet for at least the past year. It started with a burning sensation in both feet, mostly at night. My foot doctor is only just at the point of saying that my symptoms match a neuropathy diagnosis. We just can’t figure out a cause. I had Tarsal Tunnel surgery on both ankles but it hasn’t helped.
I have also noticed that driving is becoming an issue. Cruise control helps but it scares me to think my foot is going to cramp up while I’m on the highway.
Has anyone else had a doctor suggest that this may be a genetic condition? I’m not sure how it helps but I’m just wondering.
Just want to say that hearing other people describe the same symptoms that I have is such a relief! I was really starting to wonder if I’m losing it...especially after the surgery didn’t solve all my problems. Thank you!
Tammy
Hi, your story is like so many of us , I would be interested to know if you had thought about changing your car over to hand controls, I realise this may be expensive . Also I’m wondering if anyone reads this how they manage with hand controls. If their hands are affected by this horrible condition ,
I concur! Sorry to resurrect an old convo but this is what happens when I'm up at 1 in the morning because of pain.
Driving has been challenging me for months....going going, gone.
Neuropathy has given me such pain and discomfort in my right toe and foot and both legs that I am no longer able to drive comfortably or safely. It exacerbates the pain. Walking, sitting, you name it, is difficult just the same. I have driven with my left foot in order to get home and realized that this just isn't working anymore.
Can I tell you how frustrated I am to lose my independence. My Mother, Father, Aunt and Uncle all in their 70's cart my 49 year old butt around for appointments, infusions, groceries, etc... I should be doing this for them!
Not as I planned my life that's for sure which is why I will continue to persevere and keep holding my Drs accountable to help me until there is no more help to give or find. And I continue to listen and learn from you folks who bring experience to the table.
My feet can go numb when driving. Shifting my butt left and right helps a bit, so my guess is something about how I sit is cutting off something. This numbness goes away pretty quickly when I am out of the car. But I had this issue long before I had neuropathy in my feet so I am not sure it is related.
@sueholdenf Hi Sue, thank you for the suggestion about hand controls. Looking back at this post, I remember how desperate I was. Since then, I have gone to the Pain Rehabilitation Center at Mayo Clinic and learned many tools to help with chronic symptoms, including strengthing, and am able to drive more comfortably with time limitations. Thank you again for your suggestion.
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Hi, @tigreyes2004 - here is some Mayo Clinic information on topiramate (Topomax) https://www.mayoclinic.org/drugs-supplements/topiramate-oral-route/description/drg-20067047
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2 Reactions@walkingonpinsandneedles
I live in central Oregon, where there are great doctors, but for more in depth testing, my neurologist referred me to Oregon Health Sciences University hospital in Portland. One of the tests was a DNA, and there were indicators of a hereditary connection. I already assumed that, since my father and all five of my siblings have had neuropathy.
Driving can be painful. I'm just glad that someone invented cruise control.
Jim
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3 ReactionsI had tarsal tunnel syndrome and now have neuritis/neuropathy in both feet and I have very similar symptoms. Car trips defiantly aggravate my feet causing severe burning and I thought I was crazy because my mood also effects them. Walking too. Usually it’s afterwards that I’m “uncomfortable”. Has anyone heard of “ablading” the nerves for relief
I think you mean ablating the nerves, which means removing them, by means of burning with electricity, chemically, etc. This is not possible with SFPN, as the problem involves vast numbers of small nerves, and anyway, even if possible, would probably be counteractive. Large nerves can be ablated, but do you really want to cut off sensation to your whole foot?
BTW, I find that my recently developed metatarsalgia (pain in the ball of my right foot due to degeneration of the joint, which is an orthopedic problem separate from the SFPN) is making the neuropathy worse in that foot. My podiatrist advises me to wear orthotics, but I can't wear shoes for very long because of the neuropathy. I ususally wear flip flops or go barefoot, which is bad for the metatarsalgia. Lots of fun!
I find that almost anything can effect PN, which makes it very hard to know what to do to make it better.
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2 ReactionsIs this true if only the Baxter nerve is affected? Wouldn’t that blocked feeling to only 1/2 the foot?
The Baxter nerve is very small, and only affects a small part of the inside of the heel. I don't think there is such a thing as PN exclusively of the Baxter nerve.
Small fiber PN is generally widespread, so it would be impractical to ablate large nerves. I don't think this technique is used for small fiber PN. It may be for other forms, but it is used infrequently.
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1 ReactionHi, your story is like so many of us , I would be interested to know if you had thought about changing your car over to hand controls, I realise this may be expensive . Also I’m wondering if anyone reads this how they manage with hand controls. If their hands are affected by this horrible condition ,
Hi Rachael, have you considered converting you car to hand controls.?
My feet can go numb when driving. Shifting my butt left and right helps a bit, so my guess is something about how I sit is cutting off something. This numbness goes away pretty quickly when I am out of the car. But I had this issue long before I had neuropathy in my feet so I am not sure it is related.
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1 Reaction@sueholdenf Hi Sue, thank you for the suggestion about hand controls. Looking back at this post, I remember how desperate I was. Since then, I have gone to the Pain Rehabilitation Center at Mayo Clinic and learned many tools to help with chronic symptoms, including strengthing, and am able to drive more comfortably with time limitations. Thank you again for your suggestion.
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