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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@gina5009

Sorry, I seem to have a spelling problem with the medications I believe it should be Gabalin and Pregabolin. They Are both medications that are used for Eplepsy but for the Neuralgia they act as Pain Medication. It sometimes takes a trial of different ones to find the right one. I am sure your physician can explain this to you with much more clarity. Sorry for the confusion
Gina5009

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I think you are talking about Gabapentin. Worked for me initially, but even at max dose stopped working after a few months!

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You are absolutely right, but I have been able to reduce the amount down to 50 mg once a day and it seems to be working, although when it comes time to eat, I usually have to treat the jaw to some Ambesole (baby teething medication and that solves the problem until the next meal. I only hope it continues to work that well. I have been reading that it seems to be a progressive illness. Have you tried Arch Supports, I know they frequently are a big help to people with other foot problems.
Gina5009

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Louise, I have a friend who was also in unbearable pain in her feet and could only walk a short time. She tried all the things u mentioned also with no results. I advised her to change her diet to Low Carb fruits, berries, non starchy vegetables (lots of deep green leafies) and grass-fed beef, Alaskan salmon, free-range chicken and eggs. She contacted me three weeks later with a glowing report of vast reduction in her feet neuropathy. Nerve endings are angered by a high blood sugar level each day. And if it goes on and on, it will destroy the nerve endings.

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@ray666

Hi, Louise

"Herd" of doctors is right! That's how I felt; I'd look at my month's calendar and think, "How did I ever manage to accumulate so many doctors?" Most every appointment was a "follow-up," and I'd long since learned what most follow-ups mean: you meet with the doctor, you tell him about any changes since the previous follow-up, and then the doctor says, "Sounds good, Ray. Let's do another follow-up in six months." It can be quite dizzying. Discouraging, too.

Did I mention my three-ring binder in my earlier post – the binder in which I'm collecting the best information I can find on the very few genuinely authoritative websites about my condition? I was explaining to my partner only last evening that I'm doing this not to "out-talk" my doctors (I'd never want to do that) but only so that I can be a fully-educated layperson about my condition and then, when I sit with my doctors, ask good and meaningful (helpful, too, to the doctor) questions.

Your saying how you miss the "freedom of motion" on your stationary bike put a smile on my face – a smile of shared sadness because I knew exactly what you meant. I used to be a big-time distance runner; when I had a knee replacement and had to give up running, I took up cycling as a replacement – outdoor cycling ("real" cycling! LOL) – but caught myself complaining to friends how cycling wasn't the same as running. Why? Because I missed the "freedom of motion." Now that I can no longer ride my bicycle outdoors but instead have to content myself with my stationary bike, I'm again telling friends I miss the "freedom of motion" I used to enjoy cycling outdoors. It's easy to think: Our lives keep getting narrower and narrower. LOL

My very best to you, Louise.
Cheers!
Ray

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You could save paper (and maybe more organized) by bookmarking each site you find to be helpful.

If you never used it I’m sure you can google it.

And save a tree at the same time.

Luck to ya!

David

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@dbeshears1 Debbie, got a kick out of your color-coded system: green, yellow, red. As I sip my second cup of morning coffee, I almost spit it out laughing....but, you are making a great point and at the end of the day, the significance of a visit to the doctor is twofold. Well, to me it is. They always have the casual glancing of the clock which bugs me but as they begin going through their agenda, I listen carefully. Then, as they wrap up, I always have "a question" which they can't ignore. That becomes my time. And I always go with my questions (yes typed!!) which are on a 3 X 5 index card easily accessible and visible in my shirt pocket. I never have more than 3 items and I too glance at the clock, so the practitioner is aware that I'm sensitive to her time with me. My primary is a nurse practitioner who I've been going to for 20 years. She generally has more time to spend, my appointments are 30 minutes long and I always get in at 8:30. Since I have 3 questions, perhaps I will color code them!! Remember, keep moving and keep positive! Ed

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@njed

@dbeshears1 Debbie, got a kick out of your color-coded system: green, yellow, red. As I sip my second cup of morning coffee, I almost spit it out laughing....but, you are making a great point and at the end of the day, the significance of a visit to the doctor is twofold. Well, to me it is. They always have the casual glancing of the clock which bugs me but as they begin going through their agenda, I listen carefully. Then, as they wrap up, I always have "a question" which they can't ignore. That becomes my time. And I always go with my questions (yes typed!!) which are on a 3 X 5 index card easily accessible and visible in my shirt pocket. I never have more than 3 items and I too glance at the clock, so the practitioner is aware that I'm sensitive to her time with me. My primary is a nurse practitioner who I've been going to for 20 years. She generally has more time to spend, my appointments are 30 minutes long and I always get in at 8:30. Since I have 3 questions, perhaps I will color code them!! Remember, keep moving and keep positive! Ed

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Have to use a little psychology…. Same things we respond to they probably do! As a writer who tends to be lengthy, I know with them and their time, it can’t be wordy, so I use bullets that hopefully we can elaborate on if needed; must be well spaced to look like short lists under the few underlined subtitles, use occasional boldface on words or larger font; and colors help them find things at a glance. My PCP once wrote in her notes “I was so pleased to see so many greens on this visit and only 1 red!” Stop, Go, & Caution colors are universal, as I learned from quality courses over the years. Anything we must do to get points across, though it doesn’t work for all doctors I’ve had. I swear one may have been color blind. I need to do your watch glancing, to make sure I also emphasis that I prepared with their time constraints in mind.

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@gina5009

You are absolutely right, but I have been able to reduce the amount down to 50 mg once a day and it seems to be working, although when it comes time to eat, I usually have to treat the jaw to some Ambesole (baby teething medication and that solves the problem until the next meal. I only hope it continues to work that well. I have been reading that it seems to be a progressive illness. Have you tried Arch Supports, I know they frequently are a big help to people with other foot problems.
Gina5009

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Hi, Gina

You mention arch supports. I've been wearing orthotics since … well, for so long now I can't remember exactly. The pair I've currently got in my shoes are probably due for replacing or rehabbing. The podiatrist who designed the pair I am wearing last met with me pre-PN diagnosis. I'm working if, now that I am contending with PN, do I need to ask if my podiatrist is familiar with PN. Or, if he's not, do I need to find a podiatrist who is? Do you know, Gina? (Or does anyone who may read this know?)

Ray

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@njed

@dbeshears1 Debbie, got a kick out of your color-coded system: green, yellow, red. As I sip my second cup of morning coffee, I almost spit it out laughing....but, you are making a great point and at the end of the day, the significance of a visit to the doctor is twofold. Well, to me it is. They always have the casual glancing of the clock which bugs me but as they begin going through their agenda, I listen carefully. Then, as they wrap up, I always have "a question" which they can't ignore. That becomes my time. And I always go with my questions (yes typed!!) which are on a 3 X 5 index card easily accessible and visible in my shirt pocket. I never have more than 3 items and I too glance at the clock, so the practitioner is aware that I'm sensitive to her time with me. My primary is a nurse practitioner who I've been going to for 20 years. She generally has more time to spend, my appointments are 30 minutes long and I always get in at 8:30. Since I have 3 questions, perhaps I will color code them!! Remember, keep moving and keep positive! Ed

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(@njed, @dbeshears) Debbie, Ed
You both make an excellent point. I also try to let the doctor know that I am sensitive to his time constraints; in fact, if I can shoehorn it in, as I'm taking out my index card of "important things to mention," I'll say something like, "I wrote these before today's visit so I'd not waste your time." That usually gets an appreciative smile.
Ray (@ray666)

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Does the doctor have you on Lyrica or Gapapenten? Have you checked into the disease called CRPS? Think you could have that? I try to trick my nerves by using hot and cold water in different stages for 5-7 minutes each. It screws with my sympathetic nerve and it does not know how to respond so I get relief. I can use 5% Lidocane patches too that help. I am on Fentanyl Patches too and really takes the pain away. Good luck!!

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@ray666

Hi, Gina

You mention arch supports. I've been wearing orthotics since … well, for so long now I can't remember exactly. The pair I've currently got in my shoes are probably due for replacing or rehabbing. The podiatrist who designed the pair I am wearing last met with me pre-PN diagnosis. I'm working if, now that I am contending with PN, do I need to ask if my podiatrist is familiar with PN. Or, if he's not, do I need to find a podiatrist who is? Do you know, Gina? (Or does anyone who may read this know?)

Ray

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It sounds like your arch supports may have reached their limits. I remember being at ReHab and having the therapist suddenly deciding to check my balance (this was when I was about 70). He indicated it was pretty good (for my age). I am now 92. I am very careful in how I turn. Slowly, and carefully. I can be off balance in the blink of an eye. Something about the quick turn. I do take Pregabolin for TMJ and recently had an episode that concerned me enough to call the neurologist (I never do this). I was watching TV and suddenly realized I had been (asleep) for some time. No rememberance of being tired. Did I sleep or did I pass out? Suggestion, reduce Pregabolin, and check with Cardiolgist. I now take only one Pregabolin and no further problems. So sometimes, there just is no way to know what is causing the problem and we have to become our own Sherlock Holmes. Good Luck. Signed Dr. Watson
Gina5009

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