Sarah Howard
Sarah Howard has worked in the diabetes research field ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Marketing Manager at T1D Exchange.
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Have you (or your loved one with T1D) been diagnosed with peripheral neuropathy in your feet? Cancel reply
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The Doctor said just a touch of it.. Age=91… T1D about 70 ..
No, not diagnosed. But, if I don’t keep up my daily exercise, I feel it.
It’s mild and has been pretty stable for several years. My endo said only a small percentage of well controlled Type 1s get it and I’m one of them. A neurologist said to take alpha lipoid acid supplements to help.
had terrible pain in my feet. endo prescribed gabapentin which did nothing except make me dopey. found out about alpha lipoic acid, started taking that and the pain was gone within a week. it’s been 20 years and it still works great, no pain at all!
I have very very mild neuropathy in my feet (1 on scale of 1-10) that was “accidentally” found while working on another issue. No issues with it, so far.
I notice on most questions posed by T1D Exchange that there isn’t any delineation for length of time respondents have had Type 1.
Thats why I usually give the years T1D and Age now..
My doctor didn’t use that term, but did notice some loss of sensitivity to vibration. Luckily it’s not a problem, so far at least.
Perhaps a soupçon of it. The podiatrist noted a slower nerve response in one leg versus the other. But no pain, no tingling, no impairment, and consequently, no intervention after 72 years around the diabetic track. 🙆♂️
Not in my feet and not yet diagnosed, but my calves have constant surface nerve twitching. “Fasciculation” is the term I’ve found for it. I’ll see a neurologist soon & hopefully find an answer.
It’s been a blessing in disguise. Walking has always been one of my favorite ways to spend time, hours and hours of it. Until recently, neuropathy has never made it hard. I’m working on year 69 since diagnosis and taking insulin, and think maybe some of my beginning to stumble is just old age. So now I walk with a bit of a vengeance, and tons of determination. I think there’s a huge component of brain-muscle memory involved. Losing keys is one thing. Losing the ability to walk is another!
I have autonomic neuropathy that affects my stomach and bladder as well as some neuropathy in my inner thighs and periformis syndrome that affects my left foot.
I answered “other”. At first – using the little filament tester – I was Dx’d with neurapathy in my feet. I suggested they check beyond the balls of my feet. Then ticklish as ever. I then stood up, explained that I was a retired professional ballet dancer, demonstrated barefoot pirouettes (some contemporary pieces are done barefoot) that explained the very strong and tough calluses. Fortunately I was able to avoid the standard “you’ve got to manage your T1D better” by my prompt “lecture” and demonstration of classical ballet. Still doing well.
Have a brother diagnosed T1d 25 years ago, he “has some numbness.” Been maybe 15 years ago, but also a dry alcoholic, moderate to heavy smoker, but very active, I’m sure that helps.
An adopted cousin (not related by blood but recently bonded) has neuropathy in feet, gastroparesis, and a multitude health concerns (weight, copd, heavy smoker…), and even now out of control glucose. A family friend (TYPE2) discussed her feet problems, and loss of muscles from neuropathy.
I know for a fact the other causes of neuropathy we can stress ourselves with: non diabetic mother had neuropathy in hands and feet-possibly attributed to weight, BP, smoking, and a poor diet. A friend possibly died resulting from lack of care for a foot ulcer (A week after 911 was called from bleeding) likewise neuropathy in his feet. He was a real heavy smoker, heavy drinker, non active with a poor diet: non diabetic.
Diabetes alone can be as leading cause of neuropathy, add smoking, poorly controlled BP, bad diet, weight, and inactivity we can almost guarantee the result. I want diabetes to be my only hazard, and a minor one at that.
I have had neuropathy for about 13 yrs, painful at first and took gabapentin for yrs. but no longe painful the last 3 yrs just numbness and tingling – I take aphalipoic acid 600 mg daily.
Yes – despite years of “good control” and never having been a smoker or an excessive or careless user of alcohol I developed peripheral neuropathy in my feet and hands. At around 40 years into having lived with T1D in my body since early childhood I noticed subtle sensitivity changes in both my feet and hands, not painful just “different” and “weird”.
Plus 30 + years of being a nurse and pumping a manual sphygmomanometer bulb to obtain blood pressures on several hundred patients thousands of countless times over the years didn’t help. As a result I have nerve, tendon, fascia, and muscle damage in my hands and fingers. The muscle weakness affects my hand strength and grip, and fine motor finger skills.
I opted to decline surgery when it was recommended and chose occupational therapy, hand stretching and strengthening exercises, acupuncture and chiropractic adjustments instead. I still have good use of my hands. However, I as I age I experience increased muscle wasting at the base of the thumbs and overall numbness in my fingers. At age 69 I can no longer tie shoelaces or button small sized buttons. I keep the nerve flow energy in my hands activated and flowing by creative visualization, positive affirmations, and finger, hand, wrist and arm movement exercises and self-massage techniques.
Connie—I could have written the same thing, word for word, myself. While not particularly empathetic, the joint specialist (what a title) at least had some humor for me a week ago when he said. “Hey, after 75 trips around the sun, you gotta expect joints and things to go out.” At least I could laugh. Maybe the best and only therapeutic. 🙃
Ok, how do you answer a “NO”?
I answered YES yesterday and wrote about my experience with peripheral neuropathy and joint damage in my hands. I also have peripheral nerve and joint damage in both feet affecting nerves, tendons, muscles, and bones resulting in clawed toes and structural changes in the shape of my feet.
In earlier phases of life I was active in dance – ballet, jazz, modern, folk dancing, tap, flamenco – for many years from childhood into my 50s. Plus 30 years of being on my feet as a nurse lent itself to wear and tear on my feet.
In 2004 I was diagnosed with early stage Charcot neuro-arthropathy changes in my feet after being mistakenly misdiagnosed with “sprain and strain injury” and “gout” by four different MDs. An astute orthopedic MD did further X-rays, bone scans, and MRI testing to determine that it was “early phase Charcot neuro-arthropathy” and covered for his fellow MDs who missed the proper diagnosis “because we rarely see and recognize this kind of damage in such early stages ” .
My feet are now stable and I wear sensible shoes with custom orthotics for comfort and to accommodate the structural changes in my feet.
The filament test revealed partial neuropathy in my left foot some years ago. Then in right foot also. Doesn’t seem to interfere with my walking. But before that was diagnosed I had terrible lower leg pain. I tried over the counter insoles but nothing worked. Finally I bought custom orthotics from a retailer experienced in helping diabetics and “extra depth” shoes to accommodate them. What relief! Compression stockings also helped. Lesson: If you’re jogging or running 3 miles every other day on hard surface, don’t expect those running shoes to adequately cushion your feet after 6 months of use.
I haven’t but a T-1 cousin of mine did
T1D 56 years. Diagnosed age 6. Age 11-13 I had severe neuropathy on the bottoms of my feet especially at night. Felt like branding irons. For some unknown reason, the neuropathy resolved and has never returned.