Newbie here with questions

Posted by chrissy @chrissywashere, May 13 10:38pm

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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gnocchi | @gnocchi | May 17 10:24am

In reply to @heisenberg34 "@gnocchi That's a lot of "may"s. Let us know how much it reduced your pain." + (show)

@heisenberg34

It is helping some the alpha lipoic acid but needs at least 3 weeks so feel positive - I bought the last bottle and the man at the nature store said he takes it and it really helps - Source Naturals is a good brand - he is sold out so there has to be something. My acupuncturist told me she prescribes it for her diabetic patients. I am not diabetic but you think she would have mentioned it to me since I have the idiopatic type but same pins and needles - she also said to take the B complex with it which I do. I need time but I know it is better - as you know I had my 6th acupuncture treatment too so not sure which is helping but wont give up on the acid pill and take it for at least 3 months like it says in google. Good luck - Am only going to have 10 treatments and then spread that way out and see how I do with the acupuncture. I will keep you informed just write to me. It's a miracle I can get on but changed my password and hope it saved it. No one to help me with this getting on this website and it is a very good one.

SusanEllen66 Susan McMichael | @SusanEllen66 | May 25 10:39pm

In reply to @heisenberg34 "@SusanEllen66 How much does it help? From a ___ to a ___ on the pain scale." + (show)

@heisenberg34 well PN pain is hard to quantify of course. So the 0-10 system really doesn’t help much. Pictures are better

😀..🙂..😟…😣…😫…😭 is better
1 with 4 without

arcuri24 | @arcuri24 | May 26 5:56am

I have read that B12 is an important supplement for dealing with neuropathy. The B12 methyl formula is more readily absorbed into the body. I take a Bcomplex methyl daily. I have celiac disease so I must stay gluten free and I need to supplement certain vitamins. I was only diagnosed with this last year-6 months after being diagnosed with PN. I also note that consuming too much sugar can have inflammatory effects on the body. So you might want to adust that going forward. Not so easy to do but feeling better is worth it. Hope you feel better soon!

gnocchi | @gnocchi | May 26 7:37am

I am surprised they don't tell you to take alpha lipoic acid supplement with brand name Source Naturals 600 mg. The fact that you are low on B12 it is pretty obvious you need to take medical grade B Complex - I will give you the brand name - hold on - Xymogen - my acupuncture lady told me you pee the excess your body doesn't need - weren't you told that low vitamin B12 causes all these problems? Am surprised no one told you that. Anyway I wasn't low and was high normal last November but since then my husband passed away and had it checked again and it is only in the middle of normal so it went down - but since you already are low on B12 please take that and the alpha lipoic acid on an empty stomach in the morning for an hour. It will not hurt you - my acupuncturist told me she knows the chemists and scientists who make these B vitamins and they are medical grade.

I hope if you take this you may be happy with the results - give it a few weeks to kick in - I can already see a difference and only been on them for 2 weeks. It's good your blood sugar is under control. She told me she prescribes these two supplements for all her diabetic patients and I am not diabetic but still take them anyway. Was told as we age we lose a lot of B12 as I am 82. Good luck.

heisenberg34 | @heisenberg34 | May 26 7:47am

In reply to @SusanEllen66 "@heisenberg34 well PN pain is hard to quantify of course. So the 0-10 system really doesn’t..." + (show)

@SusanEllen66 Yes, indeed. I have filled out so many of those dopey forms with all the different questions that I think I'm going to scream.

SusanEllen66 Susan McMichael | @SusanEllen66 | May 27 7:37pm

In reply to @heisenberg34 "@SusanEllen66 Yes, indeed. I have filled out so many of those dopey forms with all the..." + (show)

@heisenberg34 I suspect we all feel about the same.

megidigo | @megidigo | May 28 10:31am

In reply to @chrissywashere "@heisenberg34 yeah it’s definitely a buzz kill lol and the only reason why I’m getting worried..." + (show)

@chrissywashere

@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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@chrissywashere

My A1C was 15 or 16 when I found out I was T2 but I was an idiot and ignored the symptoms for awhile which helped land me in this boat. My emgs came back similar to yours but I never really had pain just uncomfortable feelings and electric zaps but now numbness, toes feeling like theyre taped together and lots of muscle wasting. I dont look the same as I did two years ago. Theres other stuff too but Im just repeating myself and I guess they can be found in my comment history.

I know some say dont worry about the future but Im not even 50 and the life I am living now is completely different from what it was two years ago. Its been greatly disrupted so I cant help but worry and Im actually terrified. If I had a bit more security I might have a different opinion on that though. For me the mental aspect of this is just as bad as the physical and Im also struggling with the idea of ending up in a wheelchair as Im noticing decline. Im taking all the suggested supplements Alpha lipoic, magnesium glycinate, b12, omega 3 and some others and trying to exercise with bands to increase strength. I dont know if its doing anything though and doctors dont really do anything. I attempted to get into inpatient neuro rehab but was denied. Despite that Im actually going to attempt some exercise now. The problem is my foot feels like its going to fall off…..good times.

Apologize for the complaining and negative sounding but there is nothing positive about this for me but dont let me rub off on you! Hopefully you get some answers and support here.

For me I guess it helps to vent online even though Im cognisant I may come off annoying. Anyways welcome aboard. Im fairly new here too but chronically online due to this abomination of desolation! Well time for that exercise I mentioned…downloaded some pdfs for foot drop exercises which I think Im developing…..

chrissy | @chrissywashere | May 29 4:24pm

In reply to @megidigo "@chrissywashere My A1C was 15 or 16 when I found out I was T2 but I..." + (show)

@megidigo thank you for the information I greatly appreciate all of it! I am definitely aware of the numbness in feet especially at this point I haven’t had feeling in my feet in years and the toes ughhhhh lol I could write a book. Mine feel like I’m wearing a very boot and my toes feel like they’re being squeezed and toes well I wouldn’t know I even have any if I didn’t look. Thanks again

megidigo | @megidigo | May 30 8:31am

In reply to @chrissywashere "@megidigo thank you for the information I greatly appreciate all of it! I am definitely aware..." + (show)

@chrissywashere i just woke up with the sensation that I havent been able to describe but realized it did in fact feel like I had little boots on. Like tapping around in size 4 tiny boots that are squeezing my feet and they are so tiny I cant get them off. They are so tiny and stuck on my feet that I will be wearing them….forever. And for some reason the boots are tiny little black leather boots.
I’d laugh at the image or thought of that if it wasnt so distressing.