Living with Neuropathy - Welcome to the group

Hi, @SueEllen66

I, too, prefer going about barefoot (indoors!), but I find myself caught in a 'between a rock and a hard place' situation. I began long-distance running as a teen. In the 1980s, when I was in my 40s (I'm 79 today), I was fitted for my first pair of orthotics. I've worn orthotics ever since, But when I go about barefoot (actually, in a pair of non-slip socks), it's not long before my ankles, knees, and hips are grumbling. I sometimes think that maybe I should never have started wearing orthotics. But I did. And so now here I am, 'between a rock and a hard place.' 🙂

Cheers!
Ray (@ray666)

Thats a big challenge for me also..
I use aspercreme with lidocane
It has helped on a nearly daily basis for over a year now..

Thank you for replying. I will give your suggestion a try.

My diagnosis is Axonal Sensory Neuropathy, which is very different from the peripheral neuropathy that diabetics get. It's like roasting in a bonfire while being electrocuted, while swarms of wasps are stinging the parts of my body that aren't engulfed in flames, while swords are jamming up through my feet straight to my brain. I was taking gabapentin, now I'm taking Horizant. It works - it cuts down those symptoms to about 5 % of what they were when I was unmedicated. As the condition worsens with age), my doctors increase the medicine. I'm at the maximum dose of Horizant at this time so I'm also taking Tramadol 200 extended release. I have arthritis too now - it also gets progressively worse as we age.
I have never gotten relief with OTC "cures" that feature a smattering of vitamins, minerals, herbs, amino acids, etc. But I'm open-minded and always willing to try something new.
Thank you all for your input.

Peggy

Many of you will recognized the moniker @dbeshears1 from the virtual hallways of the Neuropathy Support Group. This week, @johnbishop interviewed Debbie for a member spotlight. Learn more about how Debbie lives well with neuropathy, the Old Bay seasoning that spices her life, and why you'll usually find her near water, poolside or listening to the waves. She also gives a nice hat tip to @njed. Click the link to read on:

- Learning acceptance: Meet @dbeshears1 https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/learning-acceptance-meet-dbeshears1/

In August I am starting an electronic program called Scrambler at UCLA. It is suppose to help neuropathy. It involves being treated at least 4 x a week, for at least 10 sessions. The time w/the doctor is covered by medicare, but the treatment itself is payed out of pocket. I am allergic to all the meds associated w/neuropathy, including Alpha Lipoid Acid, and Gabapentin , I cannot take anything. However I do use a tens unit which is a bit helpful, not much. So I am exploring this treatment.

I am an 80 year old Vietnam Veteran and have been working with 14 different doctors, trying all kinds of "snake oils" these past years and things continue to worsen including acupuncture, chiropractic, Ketamine infusions, and lately the RHA treatments- none of which helped unfortunately. I am way past the 70.000 mile warranty and now trying "Morning Kick" and Serve Regen so will keep everyone interested who cares to know. The Mayo Clinic and Cleveland Clinic are good sources, but everyone seems to be searching for answers to a very very complex, involved, and individual experience. We can't give up and we have to keep moving for sure. Semper Fi.

Hi,
I'm dealing with Autonomic polyneuropathy among other health issues. With sustained high glucoes levels, high blood pressure and high cholesterol levels for over 40 years you would think that is the cause. But with a near death experience with Campylobacta and my kidneys shutting down for over 18 hours this appears to be the main cause. A progression of Dr's telling me the stats aren't good but you'll be ok hasn't helped. Now I'm a little wiser the damage can't be undone, it was not ok at my levels. Recently I have been forcful to get some help and am now T2 diabetic on insulin and after exhuasting the blood pressure meds, I'm on the final one that is left. Sadly it effects the kidneys but for some unknown reason it has not touched my kidneys, yet. Touch wood I can sustain it in the low dosage if only to deminish the severe migrains I get. Gastrology is being very helpful and now I find I can add SIBO to the health list. Because the digestion is slow it causes the SIBO which is likely to become a regular occurance.
To date it has taken over my bowels, bladder and digestive systems with little respite. It also teases my lungs, blood pressure, physical stability, brain fade, dexterity, memory, speach, cognitive abilities and the control of my hands and lower body muscles when it wants. Occasionally it interferes with my ability to swollow. The plus side is I have little or no pain with any of it, only periodic tingling in the toes and I am not incontinent, yet! On a good day I manage and can do reasonably well, on a bad day all I can do is sit and wait it out. I have found it requires an enormus amount of concentration to accomplish what we all do without thought when it hits me. Sadly it is becoming a daily thing, some better than others. The deterioration is increasing and I'm left wondering when any of my symptoms not already permanent will become so. There is no cure or treatment for this with slim chance of ever slowing it down. I'm left formulating a plan B incase it becomes required.
Cheers

@fred101
Fred, thanks for your willingness to put your life on the line back then. With the draft, you probably didn’t have a choice, but you didn’t run away! Those were tough times for you guys.

I have Polyneuropathy . My nerves were damaged by an autoimmune disease. I was diagnosed almost 10 years ago, and I have not found anything with the exception of lidocaine that helps.

A cure does not exist. Yet…

Hi
I am 79 years old and have neuropathy. I just started taking Nortriptyline 20 mg at bedtime and it is the first medication that has worked. I feel 95% better. I am sorry that you have been suffering so long. Have you tried any of the tricyclic medications (nortriptyline, etc.? They are old anti-depressants that have been found to help with nerve pain. My neurologist prescribed it after trying Gabapentin, Acupuncture, etc.
Wishing you the best.