Neuropathy, who here has it?

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I posted a few days ago about the adventures of my feet, and was pleased to hear from so many with so much info and support.

Still, I would like to chat with folks who have neuropathy in their feet and lower limbs. Since everywhere I go to read about this reports that 60% to 70% of diabetics have it, I was hoping to find more folks here who can share their experiences.

I have two doctor’s opinions that don’t match up, which is like having none if you think about it :slight_smile: What started in the front of my foot, has grown to encompass most of my feet, and I find much more tingling and discomfort than ever. I even have tingling sensations on the inside of both ankles, and frankly, I sometimes feel it even higher than that. Not a whole lot, but enough to really scare me. things seem to be deteriorating faster than I would have thought.

The second doctor, who said it was neuropathy, gave me Lyrica, and Metanx. I am not thrilled with what I read and hear about lyrica. Several friends said they ditched it pretty quick as it really made them feel bad. The negatives are increased depression and thoughts of suicide. Since I already have those, I am gonna be real careful with it. He gave me a week supply, and said I should notice a difference in the week, so I shall wait and see, before getting the prescription filled.

Anyway, I would like to connect with others who have neuropathy in their lower limbs so I can better understand what it feels like and how it is treated. This is very uncomfortable, cost me a lot of sleep, and really increases my anxiety and fears. Not to mention how it interferes with my exercise routines. I haven’t really worked out hard since this happened early in December, and it shows in my morning fasting numbers, as well as my blood pressure, which was really good and now is moving upwards. My Dr. told me to work out in the swimming pool. As if I could afford a gym membership :slight_smile:

So, if anyone else has these foot issues I would really be grateful to hear from you and how you are coping, as well as hearing about your understanding of what the future holds as far as ever getting better or just having it get worse.

FWIW, my numbers are what I consider very good and tightly controlled. Seldom if ever spiking past 140 and my A1c is, or was, 5.5 and DX’d at 6.8 I am getting a blood workup next week including A1c and cholesterol numbers. I suspect that based on these last five weeks my 5.5 will be ancient history and be higher this time :frowning:

Everything that I read about neuropathy says it is related to blood sugar levels, but mine don’t seem to be that high. Given my initial A1c, I have to think I was around that number before the diagnosis, and not really high at any point before then.

This depresses me and makes me sad as I had hoped to avoid such complications, and thought that with my good numbers and good control I would be okay, at least for a while. Only been diagnosed for seven months. Kind of bummed out.

John

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Hi John

I’m so sorry to hear about your troubles. That would be very discouraging for me as well.
I’m afraid I don’t have much to offer from personal experience as I don’t have lower limb complications as of now (knock on wood). I have experienced strong numbing and tingling in the arms (from elbow to fingertips) and it would stay for hours, sometimes a whole day- but it was never diagnosed as neuropathy.

I have retinopathy, and that’s really scary too- so I can empathize with you.

A friend of mine is type 1 for 14 years and 27 years old. She has neuropathy in her lower limbs. She says it feels like she needs to crack her toes on a constant basis and the feeling will travel up her legs to her knees. She is on medication for it, but it has taken a few months for the sensation to go away.

I’m type 1 for 11 years and 25 years old and my A1c is hovering at 8.5- much higher than yours. I don’t know if I can equate the sensations that you’re experiencing fully to your blood sugars. “Normal” people have an A1c around 5% don’t they? And doesn’t the ADA reccommend diabetics stay between 5.5 and 6.5%?

Maybe it’s poor circulation. Does your family have a history of arthritis?

I apologize that I can’t offer too much advice.

I feel for you, I truly do, and I hope everything turns out okay. I’ve heard that most people can completely reverse their neuropathy, and I’m sure you will receive more responses to your discussion to confirm this.

Please keep your chin up. I know this is very discouraging, but it really sounds like you’re doing everything you’re supposed to do. Do not allow anyone to lay blame anywhere near you. All diabetics struggle from time to time as this is a serious and chronic disease. You’re doing fantastic and working hard- keep researching and you will find answers.

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Thank you so much Marps. You sure don’t need to apologize for not offering much advice. Its wonderful to hear from caring people like yourself.

Yea, my numbers are pretty close to “normal” The foot doctor I just saw told me to ask my MD to remove the diabetes from my record, and that I should not be mentioning it on forms and other places, since I was so close to normal without any meds or insulin, it was wrong to mark me, and make insurance and other issues out of it. I wish he would delete it, but I am sure he would not do that…

Retinopathy is scary as well. I hope its not too bad. I really don’t understand what that would be doing to you, but I would like to learn if you can describe and define it.

So your friend was able to make most of the tingling and pain go away over time with meds? I am praying that I can do that. I am out of work at the moment, and the way my feet are behaving, its hard to go out looking, as I don’t know if I can do the work that is available, with feet that don’t behave themselves, and might even get worse.

My family is like a closed book to me, so health history is a blank page :slight_smile: I left them behind in NJ many years ago. No dislike or anything, but my parents who have both passed in the last few years, never talked about such things as health issues. My brother and sisters and I have all drifted apart. Haven’t talked to my brother in about 18 years… The rest doesn’t belong in a public forum

I found out that my mom, in her last few years, would test now and then and run up numbers like 200, but her doctor didn’t do anything, probably because at her age, she couldn’t or wouldn’t do anything. Probably logical, but such information should have been shared with family. My sister knew, but decided it was just because she ate lots of Milky Ways, and not really diabetes

When, or if you already have a family, be open about such things. Its awful to think that I might have been able to put this all off for longer, or maybe avoided it altogether if my sister had shared about my mom… Plus, if you have family, stay tight with them. When all is said and done, family is all that really matters :slight_smile:

Thanks for the kind words. You helped me today. Give yourself a friendly hug from me.

John

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I went into the dr. because I had terrible leg cramps (later diagnosed as neuropathy) and had experienced a sudden rapid weight loss. The cause, of course, was type 1. Before diagnosis, I was able to gain some relief from the leg cramps by going for long bike rides. And they went away almost entirely about 2 weeks after going on Lantus. In any case, it may be worth experimenting with low impact daily exercise like cycling or swimming to see if that makes a difference. Just be certain to keep hydrated, and get plenty of electrolytes, magnesium and potassium.

hth

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Chris,

Sorry to hear about how you got to where you are…Sounds like a painful and scary way to find out the truth.

I have a friend who is a “bike fanatic” (not a bad thing) and he has dug up a bike that he thinks is big enough for me. I cannot ride the regular kind of bike you get at most stores. They are too small. I would be trading neuropathy for hemorrhoids if I rode one of those too long :slight_smile:

I am not anxious for the passage of time, but I am looking forward to warm enough weather to go riding. It will break up the monotony, and as you point out, be a better way to exercise without abusing my feet.

Don’t live in a place that is really conducive to safe biking, but once I get in shape enough, I would like to take it places, and spend some hours riding in the mountains. Not up them, but in them :slight_smile:

Thanks,

John

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omg I remember the leg cramps! Oh they hurt something awful! Used to twist my feet almost completely upside down and I couldn’t do anything to get them to go back. oh! What a TERRIBLE memory to bring up again. Thanks a lot Chris! haha. I’m just kidding. But, I do remember. The only thing I could do was force them back straight (painful) and then walk on them (omg painful) and I ate bananas. I didn’t know I was type 1 at the time either, so I’m sure the bananas didn’t help much. haha.

Oh well, live and learn

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oh thanks! I was leery of posing a reply because I didn’t have personal experience with it.
As for the family stuff, I’m sorry that you’ve gone through that too! It’s hard to stay in touch, but I have a really large family and I talk to most of them atleast monthly. I haven’t SEEN my mother in about 5 years, but I atleast talk to her once a week or so.

I am first generation type 1 in my family, so I try to be pretty open about it (atleast now that it’s going on 11 years with it. Used to be really “shut off” but snapped out of it) I make sure that my distant cousins and stuff know and I’m clear to my sister that she NEEDS to include in her PERSONAL and her SON’s records that he has an aunt with type 1. it needs to be there now. For a while I was depressed because I felt like I had “tainted” the family gene pool, but really what fault of mine was it anyway? You know? So… I hear what you’re saying. We try to stay close, but for the most part we know our histories and our locations. Everything else slides by (like daily activities) but I try to see everyone atleast once per year.

My retinopathy is still minor. My vision is just getting worse. My left eye is almost blind (over 200 / 20 vision) but I don’t think that’s related to diabetes. That eye has always been really blurry since I was a kid. I was diagnosed type 1 at age 14. Luckily, the crappy eye is the one that’s got retinopathy in it. Doctor says that if I get my A1c down, I should be able to reverse most of the damage.

if you look at it like this: retinopathy, neuropathy, it’s all nerve endings. Nerves stretch and sometimes break. But, for the most part, they stretch. And if something can stretch big without breaking, then it’s fair to say that it can stretch back to small. you know? If you catch it soon enough, and work to get it back under control, you should be able to completely reverse the damage.

Atleast that’s how I understand it. I’m not a doctor, just another diabetes survivor. haha.

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I do from my hips to my feet its really a pain at times

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How do you deal with it? How to you put up with it? I am in big trouble, I just know it. Been reading all kinds of books and reputable web sites, and find that I am simply screwed…

Found this at:
http://www.podiatrytoday.com/article/3698

There are three broad types of neuropathy (sensory, motor and autonomic) associated with diabetes. Sensory neuropathy is the most prevalent of the three and is often simply referred to as diabetic neuropathy. Symptoms usually begin distally at the base of the toes and ascend proximally up the lower leg as the disease progresses. These symptoms can often be described as burning, tingling, stabbing, and a “pins and needles” sensation in a stocking and glove distribution. The paresthesias often result in the loss of pain perception.

This is EXACTLY what happened to me. I told the first doctor, after 10 days of waiting about the base of my toes stinging, and pins and needles, and the dope just tried to sell me ortho shoes, said the nerve was irritated, (exactly the same way in both feet because I have high arches…) and told me to take anti inflammatories, and “play through it” and see how I feel in a few months. I could kick his ■■■ for being so negligent…

It was just over a month until I saw the last doctor who has diagnosed it dead on. Trouble is, there seems to be only one cure, and that is tight BG control, and I have had that since I was dx’d and my dx A1c was 6.8, now 5.5. These ‘experts’ say all I can do for the problem is keep my A1c under 7.0, and maintain between 80 and under 140, which I do, more like 125 max most every meal, less usually. They say to lose weight, but I lost 30 pounds in six months, which leaves me at 209 last time I checked, and at six feet tall. Not that bad at all. Gonna gain it all back, since I cannot work out very well if I cannot walk. They say to keep your BP low. Mine will come in around 110/65 if I relax for a few minutes before I take it, otherwise, its about 130/70 Can’t do any better than that. There is nothing left for me to do.

Damn… I got no solution. The reading is revealing that meds don’t help very often. Since I saw the second doctor three days ago, I have gotten 300% worse. Even now, I can feel it higher in my legs, past the ankles, than it was this AM, and as those who have it know, its not comfortable, and for someone without a job or insurance, its damn scary and stressful. :frowning:

All my life, my feet would be cold in the winter. They are cold now, and that makes it worse. Cannot get them warm no matter what I do, and if I overdo the warming attempts, they get inflamed and fire breaks out on my feet. I am careful since I can’t trust my feet to feel heat, and I could mess em up. That much I know, and watch out for it.

I don’t think I want to live like this. Everything they say to do to avoid it, and treat it, I have been doing for months now, and here I sit, unable to go anywhere and walk more than around my house, with the pain and sensations going higher and higher up my legs… No, I don’t want to live like this. I cannot believe this is happening to me, on top of everything else that has gone wrong the past 5-7 years, this one is pushing me to the brink. I cannot deal with it. I have a disease, and now, serious complications for which there is no cure. Gonna need to know why I should bother with carrying on.

John

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Some days I don’t always deal with it very well. And it gets me to the point of wanting to find a chain saw and remove the problem. My problem is two fold, June of 2008 I was hit by lightning after it had stuck a tree appox 25 ft from where I was standing. The shock ran up through my legs and out a cordless drill I was using at the time. It also caused alot of damage to the muscles in my legs. I was dx’d a type 2 diabetic until ten months ago. Since then they from on top of the muscle damage I have Sensory neuropathy caused by the diabetes. My toes feet and legs burn tingle have severe shooting pains sometimes to the point I have to use a cane to walk, because I really don’t trust them. But its not a constant thing I had to do a stress test today because I have heart disease. I passed the test with no problems it was afterwards my feet and legs were killing me as they are now as I’m writing this and maybe in a few hours I will get up and walk around and all the pain etc. will be gone. I usually don’t get any type of warning when its going to flair up it just does and it goes away the same way. I usually take two tylenol arthrists 650mg before I go to bed and it seems to help.

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Paul,

I am really sorry for the pain and aggravation you have to deal with. I hope you have some good days, to help offset the bad ones.

This AM I feel worse than I did when I went to bed. I guess its just gonna get worse and worse until, who knows? My fasting numbers are rising every day as the stress goes up. I don’t know…

Anyway, thank you for sharing, and I hope things get better for you.

John

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So sorry, John.

The joys of stress on top of everything else is an additional burden. Lack of sleep doesn’t help BG either.

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Yeah, I think I am getting some numbness in my feet and hands. I have had D for about 12 years dx’d. I am on a pump and my bs numbers are much lower now. I tried some cream for my feet tonight made especially for diabetes patients. I hope it helps with the cracked heels and rough skin. Of course the winter doesn’t help either. Good luck with your D.