Living with Neuropathy - Welcome to the group

Good afternoon @jamiebw and welcome to Connect. I am so sorry to read that you are suffering. I think we all have experienced suffering. On the Connect community, our mission is to improve the quality of life for every member.
For me to help support your situation and condition, I will need to know more about the medical issues that are causing you pain, unhappiness, and disappointment. Have you been diagnosed with a form of neuropathy? Are you receiving treatments of any kind?

What is your greatest concern?

May you be safe, protected and free of inner and outer harm.
Chris

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.

@julkun, You can use the private message function of Connect to exchange contact information with another member or converse with each other but sometimes it helps everyone if you share on Connect.
https://connect.mayoclinic.org/get-started-on-connect/

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?

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 .

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 ?

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 .

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 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/

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.