21 Comments
Have you (or your loved one with T1D) been diagnosed with neuropathy?
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A little on my feet…Sweet Charlie
Had it pretty badly in my feet, a lot of pain. Take Alpha Lipoic Acid daily and the pain disappeared within a week and has never returned.
I’ve been taking alpha lipoic also! It really works great for me.
alpha lipoic acid helps me out too.
Hard to believe that 72% Replied No, I’m not currently bothered by it (T1 57 yrs) but it seems like it is a part of every Dmers Life.
47 years and counting and fortunately nothing as of yet. That said I do get the odd tingling at times while sleeping and I’m thinking it has to do with my blood circulation or the lack there of. 🤞 it doesn’t progress into anything more severe.
My T1D husband had neuropathy in his older years. The worst part was how it affected his balance. To combat this, we had 3 walkers he used for several years : one upstairs, one downstairs, and a rollator for outside kept in the garage. He also took Alpha Lipoic Acid and when we went out, he used his downstairs walker which folded up. He renewed his interest in duplicate bridge and enjoyed the challenge.
I was fine for the first 50 years with T1D, it is only in one area and annoyed me most at bedtime. Gabapentin helps.
DX 25 yrs after diagnosis, took Gabapentin for 9 yrs. no
longer painful. off Gabapentin, just numbness in feet and lower legs now.
I have felt the sharp pain in my feet like I would imagine what stepping on broken glass or hot coals might feel like. It was diagnosed as Peripheral Neuropathy. I took Metanex, a vitamin B supplement and it worked for a while but was expensive. My Peripheral Neuropathy pain is short lived like 15 minutes and gone, unlike strained muscle pain which lasts hours.
I’m considering alpha lipoic acid thanks to others that have commented here. Thanks!
Yes, after 54 years of T1, I now have neuropathy. It’s frustrating since my control has always been good. I can only remember a few short periods when it was not. So now I am taking Metanx, a supplement they are now prescribing and it has helped.
I have had T1 for 48 years, my brother has had it for 35 and my other brother for 33. My brother who has had it for 35 years developed neuropathy years ago and has always taken very good care of himself. My other brother and I have not developed it. It is a mysterious and frustrating disease.
Not officially, so I answered No.
I have had some numbness in one foot for some years, it comes and goes with my blood sugar excursions. I asked for testing/diagnosis but that was inconclusive.
I answered “yes” because I’ve lost a bit of sensitivity to vibration in my feet, something my doctor tests annually. It’s been 30 years since my diagnosis. I feel very lucky that’s my only complication. Knock on wood.
I’ve been taking alpha lipoic acid for years now the max allowed. It helps heal nerve endings. For me it has really helped.
No, but the bottom of my feet feel like plastic. Also, for 10 years, have what I call “the itch from hell” which periodically crosses the length of a foot for about 10 minutes. All I can think of is, “It’s not pain, it’s not pain.”
What you describe are some of the signs and symptoms of peripheral neuropathy. Neuropathy does not necessarily cause pain. It can manifest as sensations of tingling, numbness, itching, cold, burning, a feeling of tightness like you are wearing tight gloves or socks – not all of these, but some of these may be what a PWD experiences as a result of peripheral neuropathy. It develops insidiously over time and the longer you live with T1 diabetes the more likely it is that you can and will develop some form of neuropathy. It often does happen in the hands and feet, but can affect other organs and body parts as well.
No, after more than 50 years. I’ve always s exercise and as I age (82) I have increase exercising my legs and feet even when I’m sitting down watching tv. I think that helps.
I was in denial for years about the insidious nature of neuropathic changes taking place in my body affecting peripheral nerve endings in the joints and muscles of my fingers, hands, toes, and feet. Neuropathy can affect very organ and tissue system in your body, including heart, eyes, ears, GI tract, sexual function. Even with excellent BG control and lots of physical activity, the longer you live with T1D it is likely that some form of neuropathy is happening as you age with diabetes.. True, alpha lipoic acid can help to promote & preserve healthy nerve function in some but it is not cure for neuropathy that has already progressed.
Most health care providers don’t diagnose it in the early stages or educate us about it because:
(1) it is not on their radar unless we mention it to them. Often the extent of their knowledge & experience about peripheral neuropathy is performing an obligatory monofilament screening test, that doesn’t really diagnose or determine anything except a loss of sensation and doesn’t really give a true picture of any overall neuropathic damage until it is well advanced.
And: (2) PWD patients don’t mention it because we think it is nothing to worry about OR we are afraid to say anything about it to them because we are so afraid or ashamed of being diagnosed with neuropathy. Denial doesn’t help.
Neuropathy is what it is and it happens to many of us, if not most of us, at some point. It is not the end of the world – it can be lived with and requires the ability to accept, adapt, and adjust one’s self-care routines.
After reading these comments, I think first signs of neuropathy were loss of balance and diminished hearing after 50 yrs T1D. Yet I’ve only been diagnosed with neuropathy in a couple of toes on one foot. More recently I’ve noticed erectile dysfunction. I do balance exercises which really help, so do not use cane or walker. I now wear hearing aids. For ED viagra and Cialis are useless. I have not tried testosterone ointment or cream or anabolic steroids.
Yes, but mine was caused by chemotherapy.