Living with Neuropathy - Welcome to the group

I like this site because it is a good informational start. That being said, I am very disappointed that I can't talk one-on-one with somebody who has similar pain. People come here for unbearable pain solutions. We know it's not a dating site. Sometimes I can help a person if I could just ask them a few questions and sometimes I'm sure that a person can help me. Please, keep this site if you want to but give us options that can give a quicker solution, and that is the one-on-one contact. If you really want to help you'll consider a second site.

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 .

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.

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.

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.

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.