Type 2 Diabetes: I have neuropathy in my feet and legs

Good evening @sandiwantstofeelbetter I hope you are sleeping well as I write this. Welcome to Connect, a group of caring patients, caregivers, and providers. We cannot diagnose or prescribe. We are happy to share our experiences and to try and help you in a safe and secure environment.

Let me see if I can interpret what you are trying to tell me about your pain and suffering. You have neuropathy which right now is affecting the lower leg area. You are very sensitive to some medications and do not seem to have a medication routine that works consistently. Have you had a medication screening to determine what might work best for you? What type of clinician are you seeing? Neurologist? Have you been given a diagnosis?

How long have you been suffering and floundering as you try to live with high pain levels? Have you been to a pain clinic of any kind?

My neuropathy journey began pretty much the same way....gabapentin and antidepressants. After multiple surgeries, the neuropathy symptoms became more frequent and more intense. I chose to be educated about medical cannabis. And without too many mishaps, I put together a pain management program that works for me. Do you have access to medical cannabis in a reputable, controlled dispensary.?

And finally, would you mind telling me your age and activity level. What hobbies to you have? Do they distract from your pain? Have you experienced the benefits of gentle yoga, mindfulness, and meditation? Our brains can be trained to help us.

As soon as you can respond with additional information, I will be able to connect you with others who have shared your experience and found some answers.

May you be free of suffering and the causes of suffering.
Chris

@sandiwantstofeelbetter
Hi Sandi. My wife has horrendous nights sometimes as well. She is allergic to most drugs so she turns to Marijuana and kratom for relief and just recently has been experimenting with cbd oil with THC. On normal nights she soaks her feet in hot water (very hot 🔥) and then applies a product called Penetrex to her feet. Otherwise she pretty much just deals with the pain. Other than that she tries to maintain a balanced and healthy lifestyle. Her one downfall is not exercising enough due to fatigue from the constant pain. That is about all I can offer you about how she deals with it. Best, Hank

@sandiwantstofeelbetter Hi Sandi, I also suffer from extreme pain due to foot neuropathy. One of the things that helps my pain quite a bit is Kratom. Kratom is made from a SE Asian leaf from trees related to the coffee plant. It is not FDA approved and 5 states do not sell it. However, many people here at Connect do use it to reduce their pain. Private message me if you want to know more. My heart goes out to you. I know pain. LoriRenee1

Chris, thanks for your reply to Sandi. I am a 74 year old male suffering from PN in feet and lower legs. On high dosage of gabapentin each day. Would like to learn more about you going from gabapentin to medical cannabis. Thanks, Terry

:Lori. would like to learn more about your experience in using Kratom. Which type and strength? Thanks, Terry

I have a few questions for the group:

1. What is Small Fiber Neuropathy? None of my physicians have ever mentioned this before.
2. I take 300 gabapentin once nightly. Does this drug aggravate PN? Been taking it for the past 5 years or so when I originally thought I had RLS. Occasionally, I have night issues with cramping, but always have the tingling, muscle twitching constantly.
3. I do not have pain of any kind. Am I in the minority of PN people?

@jrayk Having neuropathy without having pain does put you in the minority but you are not alone. I also have idiopathic small fiber peripheral neuropathy without pain. I just have numbness. Not that I'm complaining since without pain means there are no drugs you can take to help since drugs only mask the pain signals in the brain (my non medical interpretation/opinion). Gabapentin is normally prescribed to treat neuropathy pain.

You may want to take a look at the following discussion:
- Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/

If you want to learn more about neuropathy and how it's diagnosed, here is an easy to understand explanation of small fiber peripheral neuropathy by Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin:

Good afternoon @jrayk .....I kind of want to jump in here and relay my life partner's story of gabapentin which he took for quite some time for RLS. So......that checks out. As his RLS became more troubling and interfering, his medication was changed as well as the timing of the dosages.

He does not have pain just the "jerkies". His first choice for a good night's sleep in addition to his RLS dosage is medical cannabis right as the lights go out. So....perhaps that will help with your research.

May your day be one of peace and ease.
Chris

Thank you Chris. Medical cannabis, is that smoked, ingested, topical?

Yes, I am a type 2 diabetic and you would never know it. I take no pills for pain and the few times I had neuropathy, I marched in place and cut my carbs and the problems went away. Call me lucky, if you like, or call me stubborn, because I took a couple of gabapentin and couldn't get out of bed, so I quit that idea in short order. After 14 years of self managing, my diet controls the diabetes and the neuropathy goes away with exercise, however the neurologist told me exercise wouldn't help. I do it anyway. In my case I consider my diabetes an eating issue, and I still recommend diet changes before pills. I consider cannabis a last resort, but my eating plan keeps me from needing much in the way of pills. I take one metformin a day and think I will be able to skip that next summer when I have fresh garden veggies to eat. I love to eat, and I enjoy variety, so being devoted to my diet has been successful for me. I don't think of myself as having a disease so I do not look for pills as they do not cure diabetes. They may offer some relief. I hope my supporters are not tired of hearing me talk about eating fresh veggies and fruit. I also eat a lot of fish. I eat nothing from a box or bag except a few crackers. I wish more doctors would talk to their patients about diet or send them to a nutritionist. That is the helpful way to get better and enjoy eating well. Dorisena