Unbearable Neuropathy

Posted by louise@lou @suzed, May 27, 2023

The peripheral neuropathy which is largely on bottom of foot is extremely hard to walk on with the inflamed pain. Pregabalin doesn't help, nor lidocaine patches. And since I'm walking abnormally, foot is ruined even further.
I find myself unable to do simple tasks with the chronic pain of PN. I suggested to my pain specialist seeing a neurologist, but he informed me we have to get the pain under control first. That hasn't HAPPENED. At a loss what to do.

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Hello @suzed, You mentioned in another discussion that you had a 5th metatarsal osteotomy in Nov 2021 and suffering with more pain since then. Is the neuropathy pain you are having in both feet or just the one you had the surgery on?

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@johnbishop

Hello @suzed, You mentioned in another discussion that you had a 5th metatarsal osteotomy in Nov 2021 and suffering with more pain since then. Is the neuropathy pain you are having in both feet or just the one you had the surgery on?

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Hi John,
The neuropathic pain has spread to the left foot though not as bad as the right one.

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@suzed

Hi John,
The neuropathic pain has spread to the left foot though not as bad as the right one.

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Have you ever had your gait checked to see if it might be contributing to the pain?

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Good morning, Louise. I read your post with interest. However, I'm one of the blessed persons with peripheral neuropathy but have yet to suffer any pain, none directly that's the result of my PN. What caught my interest in your post is your saying, "since [you are] walking abnormally, [your] foot is ruined even further." Even though I've no PN pain, my balance is all screwy, and my gait is awful. Years before I was diagnosed with PN, I knew I had severely flat feet, for which I've worn orthotics for decades; a left knee that's chock full of arthritis (my right knee is already a prosthesis); and hips telling me daily they too are now stocking up on arthritis. Since my balance and gait problems began (10 years ago?), all of these long-time aches have only gotten worse. Like you, I'm also wondering to what degree my balance and gait troubles are only adding to my aches elsewhere (ankles, knee, hips). More urgently, what, if anything, can I do about it? It's very easy to feel ganged up upon when different parts of the body all start complaining at once. I wish you the best in finding relief, Louise! ––Ray (@ray666)

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Go see a neurologist it can only help.

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Like you, I have extreme burning pain in both feet (although, one is often worse than the other). I simply soak them in cold water. Not freezing, ice water but colder than just "cool", until the heat is drawn out. I keep a small, portable fan under my desk & by my feet in bed. It seems simplistic & a bit silly, but it stops the pain. I am retired, so I am able to do this several times a day. I even have these soaking "boots" to use in my office, which are less obtrusive than the foot soak bucket I keep in the bathroom: https://www.amazon.com/dp/B09XQQFVKB?psc=1&ref=ppx_yo2ov_dt_b_product_details
My feet are also deep red & look horribly inflamed, but my doctor, vein specialist (I had vein ablation), podiatrist & pain doc have no clue as to why. It started in 2021 with mild redness on the top of my right foot & has spread to both feet & ankles, top & bottom, over the past year & a half. It's the reason I went to a vascular doc in the first place. I guess it's a medical mystery, which seems unbelievable to me. I take 2100mg of Gabapentin per day & recently started taking one 10-325 Hydrocodone in the evening, which doesn't completely take away the pain, but takes the edge off & gives me some relief. I can bear the pain during the day, but after 7-8:00 at night, it's excruciating. I quit going to my neurologist 2 years ago. He would just give me drug samples & tell me to come back in six months. Neurologists can diagnose, but neuropathy can't be cured. Believe me, I feel your pain.

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Hi Louise, first let me wish you a pain free life so you'd be free from suffering. I've had PN for over 10 years and have tried almost everything and still searching for the solution to my inflammation flare-ups during the day. If I understand correctly, you started with a pain doctor and have yet to go to a neurologist. Isn't that backwards? The first step in getting better from anything is to know exactly what you have. Go see a neurologist and a nerve specialist, if necessary. I say this because my PN encompasses my entire foot (both feet). The various pains (coldness, burning, nerve "shocks", cramping , etc.) are coming from within my feet, not bottom or top. Maybe you don't have neuropathy. In any case, get the info first and then attack your pain with everything. Wishing you the best of luck!!!

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@julkun

Hi Louise, first let me wish you a pain free life so you'd be free from suffering. I've had PN for over 10 years and have tried almost everything and still searching for the solution to my inflammation flare-ups during the day. If I understand correctly, you started with a pain doctor and have yet to go to a neurologist. Isn't that backwards? The first step in getting better from anything is to know exactly what you have. Go see a neurologist and a nerve specialist, if necessary. I say this because my PN encompasses my entire foot (both feet). The various pains (coldness, burning, nerve "shocks", cramping , etc.) are coming from within my feet, not bottom or top. Maybe you don't have neuropathy. In any case, get the info first and then attack your pain with everything. Wishing you the best of luck!!!

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I think it's backwards also, but my pain specialist says address the pain with medication first even though I disagree. I will see the nerve specialist regardless of what he says. Thanks for the advice, and appreciate your comments.

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@cher27

Like you, I have extreme burning pain in both feet (although, one is often worse than the other). I simply soak them in cold water. Not freezing, ice water but colder than just "cool", until the heat is drawn out. I keep a small, portable fan under my desk & by my feet in bed. It seems simplistic & a bit silly, but it stops the pain. I am retired, so I am able to do this several times a day. I even have these soaking "boots" to use in my office, which are less obtrusive than the foot soak bucket I keep in the bathroom: https://www.amazon.com/dp/B09XQQFVKB?psc=1&ref=ppx_yo2ov_dt_b_product_details
My feet are also deep red & look horribly inflamed, but my doctor, vein specialist (I had vein ablation), podiatrist & pain doc have no clue as to why. It started in 2021 with mild redness on the top of my right foot & has spread to both feet & ankles, top & bottom, over the past year & a half. It's the reason I went to a vascular doc in the first place. I guess it's a medical mystery, which seems unbelievable to me. I take 2100mg of Gabapentin per day & recently started taking one 10-325 Hydrocodone in the evening, which doesn't completely take away the pain, but takes the edge off & gives me some relief. I can bear the pain during the day, but after 7-8:00 at night, it's excruciating. I quit going to my neurologist 2 years ago. He would just give me drug samples & tell me to come back in six months. Neurologists can diagnose, but neuropathy can't be cured. Believe me, I feel your pain.

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Well, I didn't just get this peripheral neuropathy out of nowhere, and that makes me incredibly angry.
It gradually appeared after an orthopedic surgeon did revision surgery November '22,
Most of my inflammation is at the bottom of the foot, and walking is torture.
Your mild redness could be CRPS? which I have in both big toes. Mine hasn't spread luckily, but who knows what else these awful conditions bring?
I'm sure your life has altered the same as I, and I truly hope you can sleep better at night. I take Pregabalin plus Lorazepam which helps a bit with me.

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@ray666

Good morning, Louise. I read your post with interest. However, I'm one of the blessed persons with peripheral neuropathy but have yet to suffer any pain, none directly that's the result of my PN. What caught my interest in your post is your saying, "since [you are] walking abnormally, [your] foot is ruined even further." Even though I've no PN pain, my balance is all screwy, and my gait is awful. Years before I was diagnosed with PN, I knew I had severely flat feet, for which I've worn orthotics for decades; a left knee that's chock full of arthritis (my right knee is already a prosthesis); and hips telling me daily they too are now stocking up on arthritis. Since my balance and gait problems began (10 years ago?), all of these long-time aches have only gotten worse. Like you, I'm also wondering to what degree my balance and gait troubles are only adding to my aches elsewhere (ankles, knee, hips). More urgently, what, if anything, can I do about it? It's very easy to feel ganged up upon when different parts of the body all start complaining at once. I wish you the best in finding relief, Louise! ––Ray (@ray666)

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Hi Ray,

I have a high arch, and have been overloading my gait onto the metatarsals and toes. The shape of my foot did change with a hollowness in the middle if that makes any sense. My sesamoid bone is large and inflamed, and when I compare both feet, the right (bad) one is thinner (less stability) and skin is tighter than the left one.
Feet are the key balance, and if there's something wrong gait-wise, it CAN affect your knees, hips, and arms. Also muscle atrophy sets in from lack of motion. Exercise with easy weights - gentle squats. arms, etc. For balance, I try standing on one leg (usually with hand on wall) Do this daily, and your balance may improve. What I don't understand is the so-called specialists never look at both feet, and exclaim - I know what you mean, I can see the difference. Here's to all the pain-free specialists who absorb lengthy knowledge, have even written books, but have no idea ABOUT your acute pain struggles. Wishing you all the luck in your endeavors, and hope you also find peace from pain.

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