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Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

Interested in more discussions like this? Go to the Neuropathy Support Group.

ninette | @ninette | Nov 30, 2021

So good to find this group! I have neuropathy in my legs and feet and banding pain on the left side of y back after a spinal stroke in 2018 (at T2-T6 level). As I always have serious side effects on medicines I try to keep the pain in check with paracetamol and CBD oil, but sometimes that's not enough. We then tried nerve ablation (which didn't work) and today my doctor at the pain clinic advised me to start with Lyrica in the lowest dose, plus a plaster to put on my painful back during the day for 12 hours (or at night, if I prefer that). I read so many bad stories about Lyrica and Gabapentin that I'm quite apprehensive, but who knows, it might work well. As long as I don't get woozy and/or addicted, those are my biggest fears. In that case I'd rather have pain. Does anybody here have similar experiences?

REPLY
kbirchem | @kbirchem | Nov 30, 2021

Lyrica is an evil med . Big phstma makes a lot of money on it . It helps 15 % or less of the people who take it . I was on it fir months . It makes you suicidal .

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1 reply
billjim651 | @billjim651 | Nov 30, 2021
In reply to @kbirchem "Lyrica is an evil med . Big phstma makes a lot of money on it ...." + (show)
@kbirchem

Lyrica is an evil med . Big phstma makes a lot of money on it . It helps 15 % or less of the people who take it . I was on it fir months . It makes you suicidal .

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An anti-convulsant and not developed for Neuropathic pain. I found that the side-effects were far worse than the pain, so I stopped using it. The Big Pharma chasing the almighty dollar ?

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kbirchem | @kbirchem | Nov 30, 2021

I went to the Fargo ER today i was in terrible pain from neropathy . The ER doctor came invan yelled at me stating why was I in THE ER . . He could not help me . His name is doctor Stevenov from the Fargo VA . They havd me a tordal shot and increased script for gsbspentin .

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helenwalker | @helenwalker | Dec 1, 2021
In reply to @retired123 "Mine started and is in my feet and ankles making them so tight walking is assisted/difficult..." + (show)
@retired123

Mine started and is in my feet and ankles making them so tight walking is assisted/difficult and I no longer drive. It started with tingling in the feet progressing to where it is now. My lower legs tingle and have the sensation of being cold but if I touch the skin it is not cold. My surgery was for a part of my intestines that was trapped in scar tissue and being strangled. I found it interesting you mentioned IBS. I had that for about 20 years. After the surgery it is gone even though the surgery was not related to it. It makes me wonder if IBS primed my body for this waiting for the opportunity to activate. Since small fiber neuropathy can affect the smooth muscles I find some functions different from before. No pain. I'm taking supplements, exercising and trying whatever I can that might help me get back to walking and driving. All info and suggestions are welcome as I continue to educate myself on this and will hopefully find the cause to treat it. I'm taking Pregabalin for the symptoms but that is only partially helping. I'm dealing with the rest as I don't want to take a higher dosage or more Rx. I'm taking chocolate and potato chips to treat the soul. 🙂 I'm not diabetic or overweight. Just aging and that might be the cause! In any case, it stinks. 6 weeks before this started I was walking all over a cruise ship and Alaska. That was 2 1/2 years ago. I fear there is no short answer for any of us.

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Hi retired 123. My story is very similar to yours, but I developed this about seven years ago, so am now further ahead in the disability. Walking is both difficult and exhausting, and now it has spread to my hands and arms. I send loads of emails each day, both to keep in contact with friends, but also, to keep my fingers moving. Loss of feeling and icy coldness are always present, including the tightness in ankles and feet. I also take supplements, but do not take any drugs as I seemed to take them on board very strongly and felt like a robot all day. I get unpleasant sensations rather than pain, and do find sleeping very difficult. I also exercise, and have a wonderful mobility scooter so that I can take our dog for walks and enjoy the fresh air, good for the soul. Love your alternate to medication - chocolate and chips!!! It is a most frustrating illness, and like you, I had to stop driving. However, I have a lovely daughter in law who is battling an aggressive cancer, and is so brave and positive, I feel I have nothing to complain about. We don't die from this do we - well, not for a long time anyway, and I think my age will be the deciding factor on that one! All good wishes to you and I do find reading other people's problems and thoughts very helpful, thank you.

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Dec 1, 2021
In reply to @helenwalker "Hi retired 123. My story is very similar to yours, but I developed this about seven..." + (show)
@helenwalker

Hi retired 123. My story is very similar to yours, but I developed this about seven years ago, so am now further ahead in the disability. Walking is both difficult and exhausting, and now it has spread to my hands and arms. I send loads of emails each day, both to keep in contact with friends, but also, to keep my fingers moving. Loss of feeling and icy coldness are always present, including the tightness in ankles and feet. I also take supplements, but do not take any drugs as I seemed to take them on board very strongly and felt like a robot all day. I get unpleasant sensations rather than pain, and do find sleeping very difficult. I also exercise, and have a wonderful mobility scooter so that I can take our dog for walks and enjoy the fresh air, good for the soul. Love your alternate to medication - chocolate and chips!!! It is a most frustrating illness, and like you, I had to stop driving. However, I have a lovely daughter in law who is battling an aggressive cancer, and is so brave and positive, I feel I have nothing to complain about. We don't die from this do we - well, not for a long time anyway, and I think my age will be the deciding factor on that one! All good wishes to you and I do find reading other people's problems and thoughts very helpful, thank you.

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Hi Helen, Here's another discussion you may find helpful — Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

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julkun | @julkun | Dec 1, 2021

Saw this on line. Haven't tried it but I want to pass this news to my fellow sufferers. Not sure if you need a prescription: "FDA approved a new capsaicin drug for treating diabetic peripheral neuropathy (DPN) of the feet in July 2020. Qutenza, from Averitas Pharma – the US subsidiary of the German pharmaceutical company Grünenthal – is a cutaneous patch that delivers prescription-strength capsaicin (8%) directly to the skin.

REPLY
raebaby | @raebaby | Dec 2, 2021
In reply to @helenwalker "Hi retired 123. My story is very similar to yours, but I developed this about seven..." + (show)
@helenwalker

Hi retired 123. My story is very similar to yours, but I developed this about seven years ago, so am now further ahead in the disability. Walking is both difficult and exhausting, and now it has spread to my hands and arms. I send loads of emails each day, both to keep in contact with friends, but also, to keep my fingers moving. Loss of feeling and icy coldness are always present, including the tightness in ankles and feet. I also take supplements, but do not take any drugs as I seemed to take them on board very strongly and felt like a robot all day. I get unpleasant sensations rather than pain, and do find sleeping very difficult. I also exercise, and have a wonderful mobility scooter so that I can take our dog for walks and enjoy the fresh air, good for the soul. Love your alternate to medication - chocolate and chips!!! It is a most frustrating illness, and like you, I had to stop driving. However, I have a lovely daughter in law who is battling an aggressive cancer, and is so brave and positive, I feel I have nothing to complain about. We don't die from this do we - well, not for a long time anyway, and I think my age will be the deciding factor on that one! All good wishes to you and I do find reading other people's problems and thoughts very helpful, thank you.

Jump to this post

Recently I dragged out my old Exerciser 2000 Elite. It is a machine where you lay on the floor on your back, put your ankles in it and it moves you in a serpentine motion. It increases circulation and loosens muscles. It was originally for my husband. With 2 weeks of use, I am able to walk better, I can actually kind of stride. They sell for a lot, but I found one for a friend at Mercari for $60 including shipping. If anyone buys one, a used one probably won't have instructions and I can tell you how to use it. I'm 80, I think it can help anyone.

REPLY
1 reply
kwfinnie | @kwfinnie | Dec 3, 2021
In reply to @raebaby "Recently I dragged out my old Exerciser 2000 Elite. It is a machine where you lay..." + (show)
@raebaby

Recently I dragged out my old Exerciser 2000 Elite. It is a machine where you lay on the floor on your back, put your ankles in it and it moves you in a serpentine motion. It increases circulation and loosens muscles. It was originally for my husband. With 2 weeks of use, I am able to walk better, I can actually kind of stride. They sell for a lot, but I found one for a friend at Mercari for $60 including shipping. If anyone buys one, a used one probably won't have instructions and I can tell you how to use it. I'm 80, I think it can help anyone.

Jump to this post

Hello Dear Helen, Thank you for the note. I have advanced neuropathy which greatly impacts my balance. Has any tried a machine one stands upon and the machine exerts a busy buzz...so appreciate your note...I am 74,

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Dec 3, 2021
In reply to @kwfinnie "Hello Dear Helen, Thank you for the note. I have advanced neuropathy which greatly impacts my..." + (show)
@kwfinnie

Hello Dear Helen, Thank you for the note. I have advanced neuropathy which greatly impacts my balance. Has any tried a machine one stands upon and the machine exerts a busy buzz...so appreciate your note...I am 74,

Jump to this post

Welcome @kwfinnie, My balance is not that great either. I try to be extra careful when I first stand up and take a few steps, especially in the winter time. I've tried a TENS unit that kind of feels like a buzzing when it's zapping your feet but it didn't help me much. I only have numbness with my neuropathy. There is a discussion where other members have discussed ways to help with keeping your balance -- Having trouble keeping your balance?: https://connect.mayoclinic.org/discussion/having-trouble-keeping-your-balance/

Are you able to share a little more about how long you have had neuropathy and what your symptoms are?

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