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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 hi Chrissy,
I am going to start with a question. Please define “end stage”.
Each one of us is different, so if I were you, I would stay in today, and not worry about the future.
I have had Polyneuropathy for many years. The only thing I take for the pain is an over the counter supplement. It was recommended by my neurologist.
I feel like I am wearing socks most of the time. Sometimes I look to see if I do, and then wonder why my feet are cold!
Please keep in touch
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6 Reactions@chrissywashere
I'm curious how you can have Diabetes with an A1C of 5.4.
I thought Diabetes was 6.5 and above.
Like SusanEllen66 I too am curious about end stage.
Are you referring to the 4 or 5 stages of Neuropathy.
Some people use the four stage system others use the five stage system.
I have stage 4 neuropathy bassed on the 5 scale system.
My neuropathy is permanent and irreversible and total numbness meaning my nerves are now dead causing numbness.
Does that come close to describing what you mean by "end stage?" has a doctor ever told you what stage your neuropathy is you mentioned in stage so I would imagine it would be stage 4 or 5.
I hope you check your feet and don't go out without wearing good quality shoes.
You should check your feet daily for possible cuts.
I put my phone on the floor and set it on video holding my foot over the phone to check the bottom of my feet. I never know if I have shoes on or not unless I look. I often think my shoes are on and try taking them off but they usually are already off. Always feels like I have socks on. I've had neuropathy for 45 years. I agree with what @susanellel66 said, "not worry about the future." worrying isn't going to change the outcome and may make it worse or at least cause you to feel worse. It is what it is. I look at it from the point of view that it's as bad as it's going to get. But if it does get worse, I'll just deal with it when the time comes.
Take care,
Jake
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4 Reactions@SusanEllen66 I also have ice cold feet I was diagnosed with having raynayds diseased however you spell it that it. Toes are purple constantly and I could go on but thanks for replying back I’m just not sure how to slow it down as it progressed so much over the past 12 years and am now starting to experience balance issues. I have been falling at times not because of balance issues but because I can’t feel the ground properly and fell twice down the stairs I guess my feet slipped out in front of me or something but it’s scaring me because my feet are completely numb as far as touch goes I can’t feel them at all and years ago I did a EMG test and flatlined the whole thing. I’m having other issues going on too like whole body started itching for couple days and was told it’s probably allergic reaction when I didn’t take or do anything different this happened twice. My legs kinda shake inside when I’m just in standing position too like they’re going to go out on me. I wish I knew if it was caused from diabetes or b12 deficiency because I still don’t know why I gave neuropathy
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2 Reactions@jakedduck1 when I found out I had diabetes I was at 12.5 few years ago but quickly got it down
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3 Reactions@jakedduck1
Wow, you sound just like me to be honest to keep going on about it or anything but I have the same issue I’ve had for years as far as my feet is so numb that I can’t feel anything like I don’t know if I have shoes on half the time well I do, but it doesn’t feel like I ever take my shoes off. The pressure is back intense at all times the pain was so bad or I would lay in bed and smack my legs up against the ball because my feet hurt so bad but it’s not that bad anymore like a pain is starting to fade which could be a good thing because it’s not getting worse or a bad thing because nerves are too damaged which is what I’m trying to find out and thanks for replying any help is greatly help
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1 Reaction@chrissywashere
That's quite an accomplishment 12.5 down to 5.4.
So are you still considered to have diabetes?
Your numbness is caused by your nerves becoming more damaged, dying or dead.
I no longer have any pain, only numbness which is aggravating enough.
Jake
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1 Reaction@chrissywashere
Neuropathy can be caused by vitamin B12 deficiency.
My body doesn't absorb B12 so I have to have monthly B12 injections. You might wanna talk to your doctor about having B12 injections.
Jake
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4 Reactions@jakedduck1 I honestly don’t know I just know I have type 2 diabetes but my a1c is excellent and has been since I got it down a few years ago. The numbness got worse along with the pain as it got worse. But it’s been pretty much completely numb for awhile now I can barely tell that my feet are on the floor and that’s fading now too I can feel a little from the pressure of standing if I’m standing up but I know how fast I’ve progressed through the years which is why I feel like I don’t have more than a few years at this rate to be able to it’s d still because I’m afraid I’ll need a walker or wheelchair if it gets much more numb. If I touch my feet I can’t feel it but if I squeeze it hard I can maybe barely feel it. I am new to all of this online help sites so excuse me if I seem to not know much I just appreciate your help
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2 ReactionsMy mother has severe neuropathy from Vitamin B12 deficiency. She took injections for years and then stopped. She was opposed to taking them. It’s caused her significant damage and has difficulty walking. I’d ask your doctor about the treating any deficiency. i’d check Vitamin D too.
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2 ReactionsSometimes I think that these responses should be rated PG or PG-13. Not for violence, nudity, but for telling those of us with idiopathic neuropathy what we have to look forward to. I know, better to know what you're dealing with, right. For the past almost two years I have been slowly developing the symptoms that were described to me by other commenters with neuropathy. Has it been worth it knowing what was coming? Not sure. Would I want to know the time of my death? Probably not. But, here I sit, in excruciating pain, not able to do much of anything. This blog has been like a prophet, describing what was to come, like a thief in the night. I am not totally convinced that knowing is not always a good thing.
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