Diabetic neuropathy

Posted by zaph @zaph, Jun 15 9:55am

New member here. What I am really looking for is a layman’s guide to neuropathy to answer the many questions I have.

If anyone here can help I would be very grateful. As briefly as possible this is my story.

Male aged 75, 65kg, resting Blood pressure around 100 to 120 over 60 to 80. Reasonably fit due to Pilates, light weight exercises and walking two small dogs.

Diabetes type two was diagnosed about 12 years ago and I have been taking Glifage, currently 850ml, twice a day. At the same time I started to take statins. My regular A1C tests were usually in the 5.2 to 5.5 range. My home glucometer fasting readings are generally in the 110 to 125 range but go much higher when I occasionally break my dietary rules.

During my regular visits to my endocrinologist she would prick my toes and feet and was satisfied that I could detect the touch. She brushed aside my complaints that my feet felt either hot or cold when I knew that they should not. I was often getting pins and needles and had to keep moving in bed. More recently my fingers started to have the same symptons. I have never felt pain, just numbness and discomfort

A orthopaedic surgeon identified neuropathy and prescribed both Gababentin and Pregabalin to relieve pain. They seemed to have little effect and my regular doctor took me off Gabapentin and reduced the Pregabalin to 75mg from twice to once a day. At the same time she prescribed ??? which had a variety of bad side effects and caused me to lose 6kg (which was nice) in a month.

So after a battery of tests, all showing me to be very healthy, I have no idea where I am or what to do. I need some reliable understandable information about how the disease is treated, how it is reversed, how it can be stopped from getting worse and how it can be managed.

In the interest of full disclosure I had a pacemaker fitted last year and now take Lixiana and Ancoron. Also I live in Brazil and my Portuguese is moderately good but does make detailed information from doctors subject to misinterpretation.

If you got to the end of this, congratulations :))

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

John, Volunteer Mentor | @johnbishop | Jun 15 11:14am

Hello @zaph, Welcome to Connect. I don't have diabetic neuropathy but do have idiopathic small fiber neuropathy with only numbness and some tingling which I've had more than 30 years now. I can relate to wanting a layman's explanation for the many questions one has when they start their journey with neuropathy. The trick is finding reliable medical information since there is so much out there if one only relies on Dr. Google.

My two favorite sites for learning more about neuropathy when I have questions:
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview

Easy to understand explanation of small fiber peripheral neuropathy by Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin: https://www.youtube.com/watch?v=xh3xQ8Fk1-o. He also has many videos on his YouTube channel that provide easy to understand explanations: https://www.youtube.com/@MatthewBJensen/videos

There are quite a few discussions related to diabetic neuropathy that you might find helpful to scan through to learn what others have shared - https://connect.mayoclinic.org/search/discussions/?search=diabetic%20neuropathy.

The Foundation for Peripheral Neuropathy has a lot of webinars on their YouTube channel (https://www.youtube.com/@foundationforperipheralneu4122). Here are two that you might find helpful:
-- FPN Webinar Demystifying Diabetic Peripheral Neuropathy with Rodica Pop Busui, MD, PhD

-- FPN Webinar: A Holistic Approach to Diabetic Peripheral Neuropathy

Have you made any lifestyle changes over the years to help manage your diabetes?

zaph | @zaph | Jun 15 11:41am

Thanks John, those links have saved me days of searching the web. You are right about Dr Google, I am finding very hard to find a competent doctor or even to assess competency.

Yes, I have made a lot of lifestyle changes over the years. Initially I did not take diabetes seriously enough, just take the pills and give up the small amount of sugar that I ate. My diet has always been full of fruit, vegetables, pulses, good meat and dairy with vey little highly processed food. My sin was quantity not quality.

When diabetes was diagnosed I was 15kg heavier than now. My life was too sedentary. Nine months ago I gave up alcohol totally. My weight strength and flexibility are still not what they should be. Covid changed my life a lot.

kurtwalter | @kurtwalter | Jun 16 3:17pm

Hello Zaph, I have been diagnosed with diabetes or prediabetes some years ago. 84 years, 1m 75cm, 74 kg. AiC around 7.2, MD considers that satisfactory for someone my age. Overall health pretty good. I think I developed diabetes as the result of a very sedentary lifestyle and sloppy diet. Anyway until a few months ago tingling in my feet was quite painful when I was going to bed, sometimes I even had to take an Aleve. Recently I have taken more walks, around 8K-10K a day, and my tingling has nearly disappeared. Feet are still somewhat insensitive but even that is disappearing. Diet: no more sugar, limited carbs. I am taking supplements but results uncertain,

hippocraticoath | @hippocraticoath | Aug 11 1:40am

Hi all,
As a mostly uncontrolled diabetic for 25 years, I’ve caused a lot of health issues; from kidney transplant to eye damage and now for about 3 years diabetic PN.
I’ve scoured the internet and the symptoms for PN seems to be numbness, loss of balance and weakness of muscles.
I have some symptoms that seem to go beyond that- can anyone let me know if what i’m about to describe of my symptoms are normal for PN.
leg feels extremely heavy and i can barely walk. If i stay siay stagnant for more than 15 minutes like sitting on a chair, my legs seem to have lost all power usually requiring me to start slowly moving my legs til my legs start to function better. Is this normal?
What are the phases of PN and how long does it take to get to the worst?
Thanks!

John, Volunteer Mentor | @johnbishop | Aug 11 8:42am

In reply to @hippocraticoath "Hi all, As a mostly uncontrolled diabetic for 25 years, I’ve caused a lot of health..." + (show)

Hello, Welcome to Connect. You will notice that we merged your post with an existing discussion on the same topic so that you can connect with others with diabetic neuropathy and read what they have shared. If you click the link below it will take you to the beginning of the discussion.
-- Diabetic neuropathy: https://connect.mayoclinic.org/discussion/diabetic-neuropathy-3/.

You might also find these 2 webinars on diabetic neuropathy from the Foundation for Peripheral Neuropathy helpful.
-- FPN Webinar Demystifying Diabetic Peripheral Neuropathy

-- FPN Webinar: A Holistic Approach to Diabetic Peripheral Neuropathy

Have you looked into any complementary or alternative treatments?