Living with Neuropathy - Welcome to the group

Hello @jamesbstarkman, @pennellsp and @terrialbert, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. We are happy that you have jumped right in and shared a little about your neuropathy journey and what is helping you. One of the best things you can do is learn as much as you can about your condition and become become a better advocate for your health.

My two go to places for neuropathy information when I want to learn more are:
-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

When I'm searching for research and medical type information I also use Google Scholar (https://scholar.google.com/) a lot to find the most recent information. You can sort the results by year which makes it a little easier to find the latest published information.

You may find the following discussions helpful:
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- Small Fiber Neuropathy burning?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-burning/

What worries each of you the most about your neuropathy diagnosis?

PN new to me. Going to Mayo Rochester next month for studies. What do I need to know in advance of doctors visits there?

What worries me most is the sedentary mode it has provoked forcing my abdication of tennis & golf. Swimming partially replaces those enjoyable putsuits but I am 86 and consider myself very lucky in terms of my overall health,

Dependence on a maximum use 4 times (no more❗️) daily of addictive prone Oxicodone APAP 325 is a concern as well. However, my Dr and pharmacist are sensitive to patients’ experienced pain while carefully managing the law induced dispensing of a drug which had been widely abused.
We all would welcome an effective substitute drug developed specifically for neuropathy patients. Gabapentin is the most frequently prescribed but I found it’s side effects of provoking just a largely ineffective tamping down of peripheral neuropathy symptoms while concomitantly tamping down mental acuity. OK to induce some degree of sleepiness at bedtime if restricted to that purpose.
I am thankful for the carefully managed and patient disciplined use of Oxycodone APAP 5/325 that is reasonably effective for my neuropathy symptoms but would cheer the development of an equally effective non-addictive replacement as I am sure is a sentiment shared by the FDA. Unfortunately, wide misuse of this drug has caused a widespread pandemic of it’s own. Patients’ self-discipline and doctor’s & pharmacist’s careful management, as in my own experience, IS THE APPROPRIATE answer for both patients experiencing effective pain and discomfort management as well as Government oversight officials.Unfortunately, this is an objective not easily achieved on the 3 enumerated fronts. But widespread dissemination of this discussion among suffering neuropathy patients and their doctors might be very helpful to those patients, like myself, where this specific drug proves reasonably effective with disciplined use. In my case, a maximum monthly prescription for 120 tablets with a maximum use of 4 a day over a 30 day period has been the regimen. Many doctors will not prescribe this regimen fearing misuse by undisciplined patients or even criminal misuse. Luckily, my doctor and pharmacist diligently provide the necessary oversight and care.
Other personally helpful actions for my
Peripheral Neuropathy include:

1). Stay as physically active as your neuropathy permits to minimize atrophy of leg and other muscle tissues;
2) Take hot baths daily (more effective than showers in my case at least) to relax leg muscles. Massage your own legs, and move them vigorously under the hot bath water to loosen and relax any tightness or painful soreness and to lessen drug dependence with a simple activity anyone at any age can employ for some non-pharmaceutical relief for neuropathical symptoms; the installation of a walk-in-type bathtub would be very helpful where possible (rental apartments may not permit this as in my case); But if you can afford this improvement I suggest you do it to minimize step over falling risks; also bathtub installed multiple grab handles
are absolutely essential for fall prevention;

3) I have found frequent self massaging of my legs with over-the-counter Aveeno moisturizer in the push top containers is helpful and induces constructive good feeling;

4) If you are unfortunately subject to occasional falls, to get up by yourself if no one is available to immediately provide assistance, try to maneuver close to a bathtub grab handle or, if else ware, grasp a stable chair or other piece of reachable kitchen counter or whatever, try to pull up your stronger leg to a supporting position under you, then pull yourself up until your second leg is supporting you to a standing position. If you are old and too frail to do this, an assist response subscription device such as LifeAlert might be worth whatever expense it involves. I personally have never subscribed to this service having a thoughtful and helpful spouse of 50 years standing available most of the time. But if you live alone, you might consider the above mentioned service.
That’s about it❗️I hope many in the Neuropathy Group find these comments and suggestions helpful and constructive.

James Starkman

Try a Spinal cord Stimulator.

@total99 - I would make a list of any questions or concerns you have from your symptoms and what options are available for treatment including lifestyle changes that may help. A great site you may want to look through is the Patient Revolution. They have some question cards you can print out and take with you to help plan your visit:
https://patientrevolution.org/visit-tools

Thank you, but what exactly is “a signal cord stimulator?” A device? Can it be self-administered, or do you need an assistant? It’s not an injection, is it? Thanks

Should have read SPINAL not signal....autocorrect gone wild again❗️

Hello. I did not go to a Mayo neurologist, but prior to my first visit with my neurologist, I found it very helpful to review the applicable discussions in the neuropathy group on Mayo Connects. I also did an internet search for reliable sources on neuropathy and read these for background info. I then put together a list of questions and what to bring with me, which I’ve attached. Good luck!

My periodic reminder to fellow numb handers is to consider a Bidet for the toilet to eliminate the need for toilet paper. Available where plumbing supplies are sold, less than $80.00 and an easy do it yourself project.

I really apologise in advance I’m new here and unsure which group to post in so bear with me. I have been suffering for 10 years now and unsure where or who I can go to for help. I severely overheat on a daily basis whether it be 20 degrees or -5 degrees. I overheat when I’m at rest and no physical exertion. It’s really making me depressed. I do not sweat and just get a clammy feeling and almost like my body is tingling and I feel I want to pass out and have done on 2 occasions. I wasn’t like this before and was always a cold person. And yes when my hotness isn’t playing up or I have 1 good day I’m absolutely freezing as I used to always be that way. It really frustrates me as if I’m having a good day I can go out and sit in the sun it just depends on the day which shows it’s not a heat intolerance. I wondered if maybe I have sweat gland issues or damage or maybe something else stopping me able to cool down. Surely I don’t have to cope with this the rest of my life. I can’t go out I cannot exercise I can’t laugh like I used to I’m miserable all the time due to not coping and all I get off docs is I’m not in the change so they are unsure. I really can’t do this anymore and this is my last hope. Sorry for the long post. I was wondering if maybe my body is lacking in something. Nothing I do cools me down and it’s my internal body heat as opposed to my body temp as I’ve never no fever. I rally don’t understand it’s affecting my life and also my life with my kids I don’t want to do anything and have severe anxiety when I know summer is coming as all I want to do is go out and enjoy it and I can’t I sit inside crying into my pillow. X