Neuropathy, anyone?

Complications & More
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I’ve had foot and ankle issues on and off for most of my life. They are very annoying but my GP basically just refers me to a podiatrist whenever I complain about it. Usually that just results in new orthotics, new x-rays, another round of physio, and I’m on my way for another few years till I can barely walk again…

Anyway, I saw a new podiatrist today and, as usual, he was amazed at the state of my feet after 27 years of diabetes. He said my skin was great, sensation was great, everything was great. Surprisingly, he stuck a vibration device on my foot and, after asking if I could feel it, said to tell him when it stopped. I did so, and was surprised when he told me that it was “delayed” which was abnormal. But he was like, “But that’s totally normal for diabetics…normally abnormal.”

Well, I didn’t ask any questions, but I did tell him that sometimes when walking or standing I get a burning sensation on the bottoms of my feet that at times is quite uncomfortable. His response was, “We’ll see if the new orthotics help. If it’s a mechanical problem, they should help. If it’s from neuropathy, then it won’t help.”

I left the appointment wondering what was up with his comment. Was I just diagnosed with my first diabetes complication? How do people even get diagnosed with neuropathy when doctors (even my GP!) just sort of act like it’s totally normal once you’ve had diabetes for a couple decades.

Does anyone here have neauropathy and, if so, are you actually formally diagnosed, or just sort of informed casually like I apparently was today?

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I have been t1d for 20 years, and have multiple nerothropy issues.
First; I have multiple gastro issues which have made my diabetes extremely hard to control before pump. So i spent alot of time high.
Yes i have pereferial nerothropy in my feet and hands, hands last couple of years, feet about 10 years since diagnoses. I have no felling in my feet, cant feel when doc does pin or vibration test at all. Makes ballance an issue since i cant fell my toes.
With your being to feel these tests hopefully you are not having nerothropy, circulation can cause simular symtoms try wearing some compression stockings/socks. My endo says vitemen d helps nerve function.there is alot of creams, suplements that people swear buy. I personally take gabapentin, ebn-3, vitamin d, magnesium, narco, and use various rubs, creams and wear compression stockings/socks.

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Thanks for the comments! I’m sorry to read that you have such bad neuropathy. I do get a lot of numbness in my hands, but I’ve mentioned it to my endocrinologist and he didn’t think it’s neuropathy, probably something like carpel tunnel syndrome. I have not mentioned it to my GP in detail because it’s hard with ten-minute appointments to get anything more than the most important things covered.

I do take vitamin D and have taken it the past few years. I also have prescription compression stockings as my feet and legs are often swollen (again, I just get the, “Well, that’s normal, some people just get that,” comment from doctors once my heart and kidneys all check out as healthy). If I do have neuroapthy, it is definitely very, very mild.

Also, I do have a lot of digestive issues and have wondered before if it might be due to diabetes (I also have persistent tachycardia and have wondered if that might be due to diabetes). So I might ask my gastroenterologist about it when I see him in a few weeks. But, like my hand numbness, I think once the doctor finds out that I don’t have major neuropathy symptoms with my feet he’ll just brush off the idea.

Neuropathy involving numbness is one of my worst fears. Because of my visual impairment, I rely way more on touch than most people. If I couldn’t feel with my hands and feet, it would be like a sighted person losing their vision. I’d prefer almost any other complication to that.

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Hopefully you wont get it, good control helps most. Have read alot of your posts and belive you are god or at least as good as we can be with that. Yea not having feelings in hands and feet are bad but other than that they are diffrent, my feet feel cold all the time and keep me from sleeping, whenever i law down they hurt really bad, my hands dont get that but get the felling like someone stuck a burning hot needle in my hands…
Talk to both pcp and endo about this, make a seperate appt. If need be to discuss this. There are things that can help.
Most of my gastro issues predate my t1d diagnoses, not that that means anything. But i have devolped nerve damange to my stomach and colon which just exacerbates the issues.

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Have either of you been evaluated for Raynauds? I have it and some of the symptoms are similar.

https://www.mayoclinic.org/diseases-conditions/raynauds-disease/symptoms-causes/syc-20363571

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I haven’t been evaluated for it, but I definitely don’t think I have it. My hands go numb mostly at night, when using the mouse, or when carrying heavy bags, a backpack, or a rolling case (or sometimes just when my arm is in the same position for a long time). It seems much more compatible with carpel tunnel, though doesn’t entirely fit that. Sometimes my whole hand(s) will go numb, and sometimes just the first two fingers and thumb, and sometimes just the last two fingers. Sometimes I get tingling going up and down my arm near my pinkie finger, but no real numbness.

I think mine is related to somehow easily-irritated nerves or something like that. I’m not too sure there’s a lot that can be done beyond avoiding the situations that make my hands tingly or numb or by wearing wrist braces at night. (Weirdly, sometimes I wake up with my hands numb even with the wrist brace.)

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I am no specialist, but I had carpal tunnel syndrome for many years, along with several surgeries: this seems very similar.

For this, btw, having a well adapted work/computer setup can pretty solve further problems for those spending many hours per day with a computer. An ergonomic specialist can help a lot.

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HI @Jen like @T1john I too have peripheral neuropathy in my feet, autonomic neuropathy in my abdomen which for me causes GI issues and hypo unawareness, and radiculoplexus neuropathy in my right thigh/leg. Most of the symptoms manifested over a 5 to 10 year period when I was un-insured/under-insured and had little or no access to medical care due to cost. I spent the bulk of that time on Walmart insulin trying to mitigate the extreme peaks & troughs in my bgs from MDI on R & NPH. During that time I used ice extensively to try and curb the nerve issues associated with the neuropathy, not knowing that that was the actual issue. I have heard many on this forum and others state that with good BG control, they have had a neuropathy remission. I ma currently working towards that goal.

I hope in your personal neuropathy journey that you find relief and not a continued loss of function.

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So for those of you with peripheral neuropathy, did you see any specialist and get a specific test? Or was it just sort of diagnosed the way this happened for me?

I spent the first 13 years of diabetes on this regimen. No fun. My A1c during that time wasn’t bad, but it came at the price of major lows.

I certainly hope so as well! At the moment it doesn’t bother me aside from numb hands (which may or may not be related) and the odd time the soles of my feet burn. But if symptoms got significantly worse, it would have a major impact on my life. I don’t have ultra tight control, but I am hoping to get my A1c down a tad in the near future.

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Surprised we don’t have more members pitching in here?

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Possibly some members don’t realize that some of their side effects are neuropathy? I was surprised that some of my ailments were.

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@elver… are you me? Because this is getting to be too much of a coincidence… unless we just have something major in common. Some kind of underlying cause? :thinking:

I was up seeing my neurologist a couple of weeks ago, and small nerve fiber neuropathy seems to be what I’m looking at. If I’m not mistaken, it’s another name for autonomic neuropathy. I took Gabapentin for symptoms for about 6 months, and that did help, but more than anything, getting tight control seemed to have zapped my zaps. :smiley: SO corny. Anyway. So I’m doing what you’re doing, no surprise there at all, and am trying to get a handle on it with getting better control. I cannot complain at this point… Things were kind of just rolling on along at a scary rate, and then everything slowed down. The symptoms aren’t gone, but they are improved, and issues with bladder and esophagus have also just kind of stopped in their progression. That’s a lot of personal information. So. :sunglasses: There, now it’s anonymous.

I was actually trying to leave a thread alone. :smiley: But now I’m in. With a bladder update. Even though it had nothing to do with anything.

Couldn’t agree more. I also have had bilateral carpal tunnel with surgeries on both wrists. That description, hands down (sorry!), is exactly what life was like with carpal tunnel. @Jen, I also have peripheral neuropathy and difficulties with my hands, but I think you’re describing something else. The carpal tunnel numbness was more situational where the neuropathy symptoms are present more consistently.

There’s still too much about the times you’re experiencing difficulty that’s just too much of a coincidence. My numbness, which was the worst overnight, also could appear in different kinds of patterns. Often it was my pinky and ring finger, but not all of the time. My other three fingers could go down, too. And overnight, it would really just feel like my hands were balloons. There was no differentiating one affected finger from another— they were all just one big useless, painful, numb lump. There’s also the ulnar nerve… and I think that can mimic carpal tunnel. Have you been for an EMG? Everything I’ve had diagnosed in my arms/hands has been picked up on the EMG. They’ve gotten neuropathy, carpal tunnel, and a few places of a suspected pinched nerve. It’s a pretty good test.

I’m almost done. :slight_smile: The only other thing I would say is that getting my peripheral neuropathy diagnosis was not a straight shot. It wasn’t like I had numbness, had a test, and got a diagnosis. I had numbness in my feet for years before anything came up on a test. One theory has to do with Celiac Disease… but if you’ve been avoiding gluten as I know you are, I’m not sure how it would fit. I had difficulty with numbness in my feet and then reduced temperature sensation in my hands way before I started to not ace their neuropathy “exams” in office. It just wasn’t an easy diagnosis.

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@Nickyghaleb @Jen I could be way off the reservation here, but isn’t Carpal Tunnel a localized neuropathy? I had De Quervains that a Dr kept trying to tell me was neuropathy (fairly certain it’s not).

@Nickyghaleb it is purely a coincidence that we have similarities (Unless you have some redneck heritage. Most of my family - those we admit to knowing, reside South of the Mason Dixon line. A few have strayed and married carpet baggers - the shame! Lol)

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Thanks @Michel and @Nickyghaleb for your descriptions of carpel tunnel. It does seem to match pretty well what I experience in my hands. I didn’t think that my hands/arms tingling when my arm is in a weird position would fit, but maybe it does. I’ll make an appointment with my GP about it. I’ve had those symptoms for years but it’s on a daily basis now, and as I said, my worst fear is doing permanent damage to the nerves in my hands. @Nickyghaleb, your description of waking up with “balloon” hands is exactly what I experience some mornings. I’ll wake up and my entire hand is just completely numb, and it takes quite a bit of moving my fingers and shaking my hand to get feeling to gradually come back. Those are the mornings I get most freaked out. The tingling and minor numbness aren’t that big a deal to me.

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First of all, I do. So… that would be funny. And second of all, that was an attempt at a really bad joke… the common “underlying” cause was diabetes. Get it? :grin:

Mine got worse over the years to the point no NSAIDS or braces or anything would alleviate any of it at all. Things like brushing my hair or washing my hair, holding handlebars, etc… the steering wheel! Those are the things that could irritate it. I would be surprised if a doctor doesn’t have the same thinking. So as far as getting freaked out, maybe you could try to not worry the next morning it happens. Or at least not worry that it’s a life sentence of some sort.

This is from WebMD… I’m not a big fan of heading there for self-diagnosis, but this is the test I did at every single appointment, and I always had tingling with it. It wouldn’t hurt just to see if it does anything to you.

“## Phalen’s Maneuver

This is also known as the wrist-flexion test. The doctor will tell you to press the backs of your hands and fingers together with your wrists flexed and your fingers pointed down. You’ll stay that way for 1-2 minutes. If your fingers tingle or get numb, you have carpal tunnel syndrome.”

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See, this is what’s weird. My endo had me do that test when I complained to him, and it didn’t cause anything beyond maybe some mild tingling. I just did it again now and it didn’t cause anything. Yet, yesterday while standing with my co-presenter, clasping my hands in front of my stomach was creating uncomfortable tingling.

So it seems to mostly fit carpel tunnel, but not totally.

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@Nickyghaleb, @Jen there is also another test they do. Make a fist with your thumb tucked into your fist and the thumb portion of your hand in the vertical position. If you have pain when you roll your fist forward away from your body is typically De Quervain syndrome. If you have pain when you flex your wrist from left to right as in the three to nine position is indicative of carpal tunnel. Generally speaking carpal tunnel hits your middle finger to your little finger in terms of pain and De Quervains hits the thumb and the first finger

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I got it, and as seems to be my habit I have chosen the path less traveled like R. Frost.

The similarities are uncanny though…might be an interesting discussion sometime of do you know so an so… from someplace near there. :thinking: or…maybe it’s just a sign of the apocalypse.

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So, further to my original post, I’m really starting to wonder if I do in fact have neuropathy. I’m going to make an appointment with my GP next month and will either ask him about how I’d get diagnosed or ask my endocrinologist the next time I see him. But I thought I’d run this by those of you with it first.

Since I’ve been exercising two or three days a week, I’ve noticed that my feet burn like crazy a lot of the time, and sometimes my middle few toes go tingly and numb. Today when it happened I could make it stop almost instantly by just lifting my foot off the exercise equipment. I’ve noticed this same thing happen sometimes when walking, but never really thought about it much. But in the gym, it’s very noticeable and extremely annoying. Occasionally it happens at home with my feet resting on the carpet, but not nearly as often as it happens when I exercise.

Years ago I used to just think it was my feet overheating or circulation issues (shoes being too tight, since my feet do swell in the heat). But the fact that today it disappeared the moment I took weight/pressure off my foot makes me really wonder.

Is this something those of you with neuropathy have experienced, or does this sound like something else? (I know you are all not doctors…that’s why I’ll be bringing this up with my doctor as well.)

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Hi @Jen, I’m sorry I don’t have an answer for your questions, but in my case the issues are the opposite. When pressure is applied with movement added, such as walking my pain and tingling subsides. When I am at rest is when I feel the symptoms the most, especially from early evenings until 4/5 am. Movement helps to abate the symptoms, but does not entirely mask them.