I had neuropathy in my feet for a long time now, but its not painful; i just get numb, where i cannot feel my feet (cannot stand up, etc)
recently, i’ve been getting it in my hands, and as well, i have been getting it in my lower legs from my feet to beneath my knees. my legs, though, dont just get numb, they hurt. it feels like little electric shocks, if that makes any sense.
does anyone else get this? do you experience the same feelings? and if YES, what do you do to treat it? i read that there are doctors who prescribe anti-seizure medication for it as it calms the nerves. but there are so many television commercials on now promoting their meds, and it seems over-whelming and confusing especially because of the endless lists of side-effects.
would love to hear from any and all of you who experience this and how you handle it. thanks!
Me, @daisymae. Numb feet, electric shocks, problems with hands… no temperature sensation. I had numb feet for almost 4 years before I could get a doctor to call it neuropathy. Most annoying thing in the world. I’ve actually had doctors have the nerve to tell me it women often get this from wearing high heels… which would be fine if i wore high heels. And I haven’t in about 13 years.
Anyway, I’m actually going to Boston tomorrow to see my neurologist. About 6 months ago I finally got confirmation on an EMG that it was neuropathy. Not high heels. I’ve been seeing this guy for going on 2 years because of some autonomic features my neuropathy seems to have. He had me start on Gabapentin at the lowest dose, 100 mg 3X daily, and then slowly increase it. I slept better on it. That was a gift, and the shocks really did subside, however, I developed one very intense shock right above my knee which would strike at random. It was a pretty severe symptom and would hit so hard I would stumble. When he started talking about increasing it again, I decided I wanted off. I took it for about 6 months and definitely saw some improvement, but I have no desire ever to take it again. Hopefully I won’t need to. As far as those shocks, they improved with the Gabapentin, and then with the improved a1c, they’ve really stayed away. I get waves of them now, but it used to be a daily occurrence.
If you have not ever tried Gabapentin, it certainly is worth a conversation with your doctor. It’s a very common drug, and there are plenty of people who get relief from it. I would be a liar if I said I weren’t one… I just really dislike taking medicine, and I wasn’t ready to book in for life. My symptoms have remained stable for some time now, but I’m going up to talk about it all with my doc anyway. He’s a Mass General Hospital guy, and he’s good. I’ll ask what kinds of things are available now and let you know if he’s got anything else to offer.
Oh, and does Ibuprofen do anything?? I try not to take that either because of bleeding tendencies, but when the zaps are bad, I’m less worried about the blood.
I had similar testing several years ago, and also prescribed gabapentin. My symptoms worsened after known side effect of chemo, adding on to minor symptoms from T1D. So did low dose gabapentin for 6 months or so, and got improvement. Currently have occasional tingling or pain, but usually goes away soon, so no medication.
For sleep, I added a couple supplements that helped, but need to look them up, not currently taking. Maybe 5-HTP.
Ooh, could I use some ideas for sleep. I stopped sleeping well shortly after getting diagnosed with diabetes. It was a rough period so I’m not blaming the diagnosis per se, but it was bad and has just gotten worse. I dislike medicine in general and don’t like things that would leave me groggy. If you know of something for the sleep-deprived but picky, I’d love to hear about it.
Hi @daisymae. I’m so sorry you’re experiencing this! Our son is on an anti-epileptic drug for seizures and while we don’t love it and the first two months were rough, the initial symptoms (intense sleepiness, double vision, trouble concentrating, etc.) seem to have subsided almost completely. What I’ve found in my research is that each drug is a little different and that each affects each person in a very unique way. Some people swear by a drug, which has no side effects for them; another person absolutely hates it. That said, there are certain first-line drugs that seem to have minimal long-term effects on cognition and a fairly safe side effect profile. So my guess is that your doctors would likely start you on one that had been tested against neuropathy and had a fairly safe side-effect profile, and then possibly change drugs or titrate the dose based on how you respond.
Also remember that some of the side effects, with these drugs, are things that might actually be caused by the underlying condition (like epilepsy or a psychiatric disorder) rather than always being caused by the drug themselves. So while these drugs aren’t perfect, they may not be as bad as the commercials on television suggest.
I also remember European trials using some kind of nutritional supplement (something like ALA? or APA?) to prevent or improve neuropathy.
@daisymae I have it in both feet to varying degrees, my right thigh (front. Side), and. Parts of my abdomen. When it manifested, my bg control was marginal and I. Didn’t have.any health insurance. I used.with some success Naprosyn and. Ice packs so I could make it through the day, especially at night. For me it started as a buzzing feeling which then morphed into a stabbing feeling like somebody shoving hypodermics or a small knife and then it changed to being various temperatures of hot and super hot that’s where the ice packs really helped me. When I say it was hot and super hot that was internally to the touch skin was cool. Internally it felt like I had a raging infection kind of hot.
Huh! For a couple of months, two or three times a week, and usually just after I get up in the morning, I’ve had this numbness in a small area on my right thigh, roughly where I inject. Sometimes it’s a sensation of cool wetness. I never associated it with neuropathy. I’ve been ignoring it – it’s such a small thing – but maybe I should pursue with a doctor.
Passing this along, just in case it is helpful for any of you - about gluten causing neurological issues in a couple people I know:
My Non-D wife developed neuropathic type symptoms in her feet about 10 years ago. Since switching to a gluten free diet (maybe 8-10 years ago), the symptoms disappeared. She attributes it to gluten sensitivity, which runs strongly in her family (one celiac, others self-diagnosed thru symptoms).
My brother in law (not blood relation to my wife), also Non-D, has neurological type issues (restless leg, etc), and has been on Gabapentin as well as other drugs for this. He says gluten will make him crazy with restless leg type symptoms until it clears his system hours later. He avoids it like the plague.
@Beacher, I once had a quarter-sized spot on my gluteus maximus that would “buzz” around the clock and would feel like it was wet. It lasted for about a month and a half to 2 months before slowly starting to disappear. My neurologist believed it was a pinched nerve, so that might be another possibility?
Absolutely! To this day I think that’s why it was so difficult to get a doctor to call it neuropathy… I started having problems with temperature sensations and slight numbness maybe 5 years after developing diabetes. My son has Celiac Disease, and my other two are about to be tested again. I really do think that may have been what was behind at least some of my early symptoms. Outside of this last 48 hours, which have been a personal glutenfest, I have not eaten gluten for about 2 years. I’m not sure if it’s been an improved a1c, a 6 month course of Gabapentin, or the removal of gluten from my diet, but something has helped those symptoms.
I also suffer from neuropathy, and don’t like taking drugs or felling drugged. I have been on gabapentin for years, don’t like, causes memory loss but helps. My pain is severe at night expressly and keeps me from sleeping. I take Ambien to help me sleep, it is not long acting and does not make me groogy in the morning, but I don’t take but 2 - 3 times a week to help in keeping from building up tolerance, other nights I take tylenol pm. I also take a supplement called EBN-3 made for nerothpy and vitamin D. My endo started me on them. Also wanted to say there is a Facebook page devoted to neurothpy they are big on natural remedies. Can link it if you would like.
I have never been diagnosed with neuropathy, but I definitely have some nerve issues going on. For me, it seems more related to positioning and “sensitive” nerves that get irritated easily, though I’ve never seen a specialist, so I really have no clue. The front and top of my feet will go numb after walking sometimes, and sometimes my butt and back of thighs goes numb, and sometimes I get tingling down my arms, and (most bothersome at all) my hands go numb quite easily, especially overnight. I wear a splint on my right hand to help, but sometimes I wake up with my right hand numb despite that. I’ve been meaning to get one for my left hand. I very occasionally get a shooting pain in one or two toes, but it’s so rare that it does’t really bother me.