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Newbie here with questions
Hi I was diagnosed with peripheral neuropathy in 2014 when I first noticed a little numbness on ball of my foot under big toe. Right now I am probably close or at the end stage . I’ve been to specialists before only to be referred to pain relief which has done nothing for me honestly. I am currently taking 200mg of lyrica 3 times a day but for the past month or 2 I noticed a change as far as the intensity of the pain. I have been noticing a decrease in pain and haven’t had to take the meds 3 times a day instead it’s twice day now. I don’t know if it’s because less nerves are dying because it’s not getting any worse and slowed down or if it’s because I’m at the end stage and I just need some help or support badly. I’ve never reached out in the past online but I feel like if I joined a forum or group of others who are suffering from this disease I might get some answers or relief. I haven’t drove in over 5 years I believe and in fact it was a year or 2 before covid started when I no longer drove because I can’t feel the petals and felt it was too risky. I am still able to walk but sometimes I start to lose my balance and have to catch myself but it’s only happened a handful of times but it’s scaring me because I’ve heard you will be in a wheelchair eventually. For years I’ve experienced stepping on things such as a piece of a grill brush that was removed from my foot after noticing something on my foot like black spot. My foot doctor who removes my calluses removed it after suggesting that it looks like something was inside my foot. I could step on a nail and I wouldn’t even know it. Both feet are severely numb and the pressure is so bad for years but gotten worse. It’s like someone squeezing my feet especially toes as hard as they can. I can’t tell I’m wearing shoes because it feels like I’m always wearing a extra tight shoes. There’s too many things I could tell you from my experience over these years but I’d be here for hours. I was really wanting to see if you think I’m experiencing less pain due to the amount of nerve damage and if you think it’s because it’s end stage. Please any help would be greatly appreciated and I am thankful for you just taking your time to reply to me after reading this. I keep to myself so unfortunately I don’t have friends to get advice from so I am hoping I get some new friends here. Please any help would help me at this point. Thank you for listening to my message. All I’ve ever been told was to go to pain management because there’s nothing we can do or we don’t know why you have it. One doctor says it from having type two diabetes which is being controlled with trulicity injection once a week with a1c 5.4 with the other doctor saying it’s not from the diabetes if my a1c is so great. I do have b12 deficiency but am not taking anything for it even though it’s very low. I wasn’t sure if I could have neuropathy because of that or the diabetes I need a answer to this it’s been over ten years of H*** to be honest thanks again for the help!
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My old podiatrist refused to remove calluses for whatever reason tho if they grow into the foot they are called corns. I was free of them for years, but about 2 weeks after starting to recover from spine surgery in Dec of 2021 it started to come back on my right foot, and what little walking I could do was mostly barefoot or slippers on carpeted floors.
The methylcobalamin form is supposed to be the best form for nerve treatment, but once they are dead all bets are off.
@heisenberg34 After 10 years of having to deal with this insidious condition I've accepted the fact that it isn't going to get any better, ever. Not in my lifetime. It's a death sentence, not only for the nerves in my feet, but for myself as well, I'll be taking it with me to the grave.
@chrissywashere with the exception of diabetes, I struggle with similar issues.
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With Raynauds Syndrome the affected parts [mostly fingers] usually turn waxy white upon exposure to cold. My feet and toes are often a purple color. I have CVI and some sort of neuropathy in my feet and lower legs. Years ago my hands would turn waxy white from the cold, but not so much anymore.
@bajjerfan the tips of my mom‘s fingers will turn like a ghostly white sometimes when they get cold, I don’t have that problem in my fingers. I just have neuropathy in my fingers. My toes will turn purple, though if they get too cold, that was the problem I was having was my fear constantly cold and usually my toes will be a dark purple when they are too cold.
@mrmacabre I hear you. This pain is a real buzzkill. I am close to having your opinion of never getting better. However, I have to soldier on. There may be something out there(either currently of in the not-too-distant-future) that may help me, so I will continue to seek... and, hopefully, find.
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2 Reactions@heisenberg34
try alpha-lipoic acid - my acupuncture dr said it helps diabetics but I am NOT a diabetic so got it anyway - went to a nature store and good a good brand Source Naturals that is suppose to help with pain and burning but full relief could be a couple of months but may see some help in 3-4 weeks. So am going to try it and nature store was sold out - he takes it too so it must be very good - google it and read all about it. If it works what a miracle supplement. I will not take gabapentin - I took Lyrica a few days and that was it - I was so tired with the minimum dose I couldn't even walk to my car. Good luck to you.
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1 Reaction@gnocchi thanks I appreciate it.yeah I’m definitely gonna look into the alpha acid because I seen on here when I first signed up the other day that people was taking it and I do got low B12 very very low B12. My doctor actually said it was pretty low, but I don’t know if she said it was 20 or in 200 or something like that I forget it was a while back, but she never put me on anything is the problem and I went to a couple different specialist years ago and all they both did was referring me to pain management which I was prescribed Lyrica and I am on the max now 200 mg three times a day and it was helping, but I was still in a lot of pain and it would wear off faster than it was supposed to last so many nights. I cried myself to sleep pretty much. I never had any side effects with the Lyrica though never made me tired or anything, but I did hear some people on here have issues with it. I needed something else to go with the Lyrica but everything my doctor put me on really was no use. He said he could do a spinal stimulator, but I have back problems and I was afraid it would mess with my nerves even more but at this point, the pain is getting better for some reason which is very weird cause I’m not used to that. I’ve had this for like over 14 years and all of a sudden it’s not as bad. I could probably get by with taking two Lyrica a day if that pretty much the only reason why I would need it is because I’m in a little bit of pain and plus it helps with some of the symptoms that I have with the numbness and a lot of times I’ll have like a tickle in my foot or my ankle especially and was like somethings crawling on it and I try to itch it and it won’t get it if you know what I mean lol but yeah, I appreciate your help. Thanks again.
@celia16 I am on a vitamin that my doctor prescribed me. I take it once a week for vitamin D but I am currently not taking B12 which I should because it’s very low. I remember my doctor tell me what they wanted it to be at and mine was like not even close. I don’t know if she said it was 20 or in the 200s I forget it was a while ago but after hearing everybody’s experience with neuropathy and would be 12 and stuff on here, I am going to start taking it
@gnocchi That's a lot of "may"s. Let us know how much it reduced your pain.
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