Looking to connect with people who have non-diabetic neuropathy

Posted by Ann broussard @user_ch98d0b5c, Aug 6, 2018

Would. Like to find people with this issue

Interested in more discussions like this? Go to the Neuropathy Support Group.

@pjs29

Is it only by Prescription? That's my problem with this Doctor. I live on Southwest Florida on an off shore island and transportation is a problem. I will try to talk to the one doctor here that prescribes Medical M.

Jump to this post

Yes in Florida an Minnesota Doctor has to Prescribe. MyX ife lives in Florida an has Knee Pain an Neuropathy an says it really helps.

REPLY
@myfeetareonfire

I've had neuropathy for almost 3 years now.
At one point along with the Gabapentin I was using the lidocaine 5% gel on my toes. Well the neuropathy spread to the whole feet, so it made no sense in using a whole tube or more on each foot. So they wrote an RX for Pregabalin a year and a half ago. And so far it has done nothing. They are talking about a stimulator on my follow up appointment next month. Glad you got some relief Randy.

Jump to this post

My PN is idopathic but I suspect the culprit is Agent Oraange that I was exposed to in Southeast Asia.

I had a spinal stimulator implanted in January of this year and within a month or so I began to notice a slight improvement. It hasn't been a game changer that I had hoped for but I wouldn't want to have it removed. If you decide to get one , you should have a trial period to evaluate it. My pain management doctor advised me to NOT have it implanted unless I could feel a marked drop in pain during the trial period. Pain is subjective so I thought that was good advice. I don't regret the implantation as the device has clearly reduced my pain. I hope you have a good trial that gives you the clarity you need.

REPLY
@mitfit

Do the bottoms of your feet swell up at night?

Jump to this post

No, I just have a burning sensation for 45 minutes to an hour when I go to bed. Very little symptoms the rest of the day. An occasional flare up during the day. Hope you get some relief soon.

REPLY
@mayodoug

My PN is idopathic but I suspect the culprit is Agent Oraange that I was exposed to in Southeast Asia.

I had a spinal stimulator implanted in January of this year and within a month or so I began to notice a slight improvement. It hasn't been a game changer that I had hoped for but I wouldn't want to have it removed. If you decide to get one , you should have a trial period to evaluate it. My pain management doctor advised me to NOT have it implanted unless I could feel a marked drop in pain during the trial period. Pain is subjective so I thought that was good advice. I don't regret the implantation as the device has clearly reduced my pain. I hope you have a good trial that gives you the clarity you need.

Jump to this post

The stimulator is the next step when I see the specialist next month. Glad you're getting some relief from it. Most of my pain is when I go to bed, and lasts for 45 minutes to an hour. If I have to get up to use the restroom in the middle of the night, the cycle starts over.

REPLY

Same here except I'm able to get decent relief from lidocaine ointment so that I get back to sleep.

REPLY
@pjs29

Thank You. I will ask, but doubt my "Rsferral" Doctor says he will not prescribe pain medicine
I'm looking for a doctor closer to my home. There is one that prescribes Medical Marijuana but not sure I want to go there.

Jump to this post

Hi,
I felt I HAD to put in a vote for Medical Marijuana.
I have had this nasty PN disease for over 30 years. Believe me when I say I tried EVERYTHING.
One of my Doctors heard me talk about my foot pain, (he is my HAND Doctor) and gave me a referral to a doctor who prescribes Medical Marijuana. It was the best thing that ever happened to me & cut the pain by 1/3...and...I do not want to get HIGH even a tiny bit!! and I do NOT! I cannot do THC to sleep..it works in reverse on me!!! (I know that is odd) Depends on your level of pain if you try CBD or not. it's not sold everywhere and it is pricey!! I live in PA, so we have a few Dispensaries here.
Best of luck in whatever you do!!

REPLY
@mitfit

Do the bottoms of your feet swell up at night?

Jump to this post

Sometimes they do but only when I have a lot of swelling going on it’s rather painful sorry you are going threw that
Have you tryed elevating your feet and legs above your heart when laying down over night for a few nights and when ever you lay down it should help with the swelling some
I’m not a Doctor so you may say something to your doctor about it next time you them so if it’s something more serious they can look into it ok hope elevating them helps you 💜

REPLY
@pjs29

Thank You. I will ask, but doubt my "Rsferral" Doctor says he will not prescribe pain medicine
I'm looking for a doctor closer to my home. There is one that prescribes Medical Marijuana but not sure I want to go there.

Jump to this post

Gabapentin is an anti inflammatory medication but it help me with pain in my legs and feet sometimes I take as little pain killers as possible because they are addictive and over time you. Stronger doses to help so I don’t take them unless I’m in extreme pain never have

REPLY

I have non-diabetic small fiber neuropathy w/ autonomic dysfunction. Last year I had disturbing gastrointestinal issues after eating with spasms, pain and nausea, and I found out from my GI Doc that I have delayed gastric emptying. My G.I. symptoms have subsided somewhat however, I still suffer from extreme fatigue, lightheadedness and difficulty walking and I wanted to know if anyone has tried low-dose naltrexone to manage their neuropathy pain and other autonomic symptoms? Thx!

REPLY
@bailey11

I have non-diabetic small fiber neuropathy w/ autonomic dysfunction. Last year I had disturbing gastrointestinal issues after eating with spasms, pain and nausea, and I found out from my GI Doc that I have delayed gastric emptying. My G.I. symptoms have subsided somewhat however, I still suffer from extreme fatigue, lightheadedness and difficulty walking and I wanted to know if anyone has tried low-dose naltrexone to manage their neuropathy pain and other autonomic symptoms? Thx!

Jump to this post

I am trialing LDN right now but it is still too early to tell if it will help. I will be moving up from 3 mg to 4.5 mg tomorrow.

REPLY
Please sign in or register to post a reply.