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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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@chrissywashere
One solution is to move to a warmer location. FWIW my feet turn purple AFTER a warm shower. Go figger!!
@heisenberg34 yeah it’s definitely a buzz kill lol and the only reason why I’m getting worried is because the pain died down a lot, which you would think is a good thing now it could be because I was told the pain that I feel is because the nerves are dying and if it gets better, it’s because less nerves are dying, so I’m not sure if it’s that or if it’s because so much nerve damage has been done that’s why I came on here to try to get advice to see if anybody else experiences similar issues, but I did two different EMG tests and I never had any kind of response to it. I looked at my paperwork and there was a flat line. I know how the numbness in my feet have progressed over the years, which is why I feel like in five years they’re gonna be so numb. I’m not gonna be able to walk anymore some little scared. I don’t have any feeling at all in my feet. I could step on a nail and I wouldn’t know. I never really got any real answers from my doctors. I went to a foot Doctor Who handles the calluses on my feet because they get really bad and he said if my A1c is pretty much perfect because it’s a 5.4 it started out at 12.5 that’s how I found out because a new doctor that I started seeing did bloodwork so I fought real hard to get that down pretty quickly and it’s been where it’s at for a few years now, but anyhow, he told me that it wasn’t because of the diabetes and the only other thing I could think of was my back because I got lumbar spine problems with my discs along with some other issues I think when I had my MRI done, they said it was pushing on my spinal cord or something like that and then my family doctor she thinks it’s from diabetes pain management doctor said it’s not my back and he explained why so I never really got any answers to why I have this and I will, I heard if you fix what’s causing it that it could possibly not get any worse so I’m hoping if I start taking B12, that’ll correct it.
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It stills says reset Password - am sick of it - something is wrong I did exactly what you said - copy code, click on the link at the email and paste it where you have to put the code in. I did all of that and still this happens when it says sign in.
Is there a phone I can call YOU and do it via the phone - that's the only way to solve this problem.
Say, only been on it 4 days and it is helping plus I take acupuncture too. Plus I take B-complex even though I don't have vitamin B low but she said take it anyway because it is dr preferred and she knows the contents and wont hurt you. I do exercise 30 minutes every day too. So, this is my combination. I have to do something as I can't tolerate the Lyrica and don't want to take gabapentin - Lyrica made me so tired I couldn't walk to my car. No life no way. Having a problem with getting on this website so not sure if I can communicate again - it is always telling me to reset my password. Drives me nuts. Anyway, I would try it - 600 mg one per day - google says let it be the first pill you take in the morning on an empty stomach for an hour and then you can eat, etc. It gets into your system better. Good luck.
@heisenberg34
I take 600mg twice a day. It absolutely does help.
@bajjerfan I live in a very hot desert. The temperatures, whether how hot or cold it is doesn’t really matter.
I have Polyneuropathy because a very rare autoimmune disease damaged my nerves. That happened 10 years ago and nothing has changed. I have Raynaud’s in my fingers and toes also.
This will never get cured, so I choose to keep informed about it. For me, the only thing I do to help is take ALA.
@gnocchi
You may need to have CS reset your account or just create another one.
@chrissywashere , my doctor says it’s crucial to get the B12 test before you start taking it, since that skew the results. Also, it’s not uncommon for a person to have absorption problems and not absorb capsules, so sublingual (dissolved under the tongue) or injections are required. Your doctor can prescribe which might be best for your situation. Vit D deficiency can also cause muscle issues.
@SusanEllen66 How much does it help? From a ___ to a ___ on the pain scale.