Hope for diabetic peripheral neuropathy in young adult

Posted by maddylou26 @maddylou26, May 5, 2023

Hello! I am really needing some hope, as reading things online that have absolutist statements of “never,” makes me feel hopeless. I got diagnosed with T1 at 20. Had an a1c between 5.9-6.5 for years but I am highly suspicious that despite the a1c, my blood sugars fluctuated a great deal as I tried to cut corners with food (like not being careful about fat and focusing more on carbs, eating whole wheat). A year into my diagnosis I had pain in my hands and feet that came and went, especially bad when standing. I was told some people just get complications faster than others. I could not accept it, and it led me to care less for my diabetes, wanting to run away. I hadn’t even accepted my diabetes when this had happened and I feel like I began to avoid mentally to preserve myself emotionally. I had about three years of great diet exercise and the symptoms were pretty minor but still got a little worse over time. The past like 2 years haven’t been as good, last year I was at my absolute most wreckless, eating anything and everything I wanted and going on a blood sugar roller coaster almost nightly. Again, a1c would have you believe it wasn’t that bad (7). Now I am on omnipod and can see my time in range, with the CGM. I have some good days where it stays at 70% or more in range and days where it’s like 40%. I am really trying to hone in on my diet now though so that time in range gets better when I do that. I bought a scale for my food and have been avoiding foods I know will spike me, eating more veggies lean meats and whole grains and not letting myself cheat and eat the whole kitchen when I’m low but staying at the 15 gram carb snack recommendation. Regardless, my neuropathy symptoms have grown way way worse over last year and now I am just hoping I can either A. Stop it from getting worse, by considering time in range for the first time and making efforts not to swing up and down, OR B. Improve my sensation from where it is right now? I read conflicting things about this and never know what to believe. I get scared that there is no hope for me controlling it at all from getting worse when I am so young (29) and I want to be able to look to my future with hope. It’s also my mentality that I have to work on—I have emotional trauma that likely led me to project the worst and give up on caring as much for myself because when my symptoms were mild I just assumed it was hopeless then too. I carry a lot of shame and anger for the way I behaved and I feel like I blame myself for this happening to me, but it doesn’t help me. I want to know of hopeful stories, i need to know that there are other people going through this and living their lives in spite of it all, with joy. All the things I read online are so sad, hopeless, negative and fear inspiring. I hope I can increase sensation and welcome any suggestions. I cut out alcohol 2 years ago which I hope helps. I exercise twice a week hiking and used to go to gym five days a week, looking to get back into that. Now newly committed to addressing my diet I hope this will open a new door of relief from sensations (pain isn’t severe, I have decreased sensation, heat sometimes, tingling, zapping, all sensory no motor in hands feet arms legs and sometimes face/torso). I have requested a new referral to get reconnected with a neurologist, and I’m actually going to see a rheumatologist as well to rule out anything else (since even though I’m only realizing now my time in range could be the culprit, I did have diabetes very briefly with decent control before getting neuropathy which isn’t as common as having it longer and then getting it. In addition autoimmune conditions of all kinds run in my family). I think it will make me feel better to rule out other things, but ultimately I am finally ready to admit that my actions have contributed to this and I can change those actions. Do you have stories of having numbness or decreased sensation and improving it? How did you do it? How do you cope emotionally? Do you know of support groups for young people with diabetes who have peripheral neuropathy?

Interested in more discussions like this? Go to the Diabetes & Endocrine System Support Group.

Hello @maddylou26, I'm sorry to hear you are having to deal with neuropathy at such a young age. I have always been in the pre-diabetic category since my 30s and noticed numbness in my toes sometime during that period but pretty much ignored it until it started progressing. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. What I can tell you is that you are doing what I wished I would have done earlier in my journey - learning as much as you can about neuropathy and lifestyle changes you can make to help. I think you might find the following discussion helpful:

--- Low-carb healthy fat living. Intermittent fasting. What’s your why?: https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/.

There is also a lot of good information on the Foundation for Peripheral Neuropathy website here: https://www.foundationforpn.org/living-well/. Also, you might want to check out other discussions in the Neuropathy Support group - https://connect.mayoclinic.org/group/neuropathy/.

You might want to make a list of questions you have to take with you to your upcoming appointments. Do you normally write down questions you don't want to forget at appointments?

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