Living with Neuropathy - Welcome to the group

@andyjustin, It's OK to vent, sometimes that is all we can do to offload some of our struggles and pain. Not sure if you have ever tried meditation but there are other members that have mentioned it as being helpful. Here's a YouTube video example that might be helpful - Guided Meditation for Chronic Pain - https://www.youtube.com/watch?v=Fdr-jK4XrrM.

I understand the need to vent. I also don't know what each day will bring me. Add that to the lack of support from medical people, it's a struggle. I have started PT to try to strengthen my legs. But the lack of understanding from others is hard. It's been good to be a part of this site and know I'm not alone.

It all before I got autonomic neuropathy I never even heard of it now I live it every day most of the days I don’t have to vent. My medication seems to work pretty good although there is a pointed every day I do feel symptoms strangely enough my symptoms come and go, and in my wildest dreams, I like to pretend it’s in remission. Well it’s not it’s here to stay luckily, I have not lost the ability to use all my body parts and when I say that I mean, feel all of them and go about my daily activities I still like sugar I still like coffee and the occasional joint I don’t drink anymore eat healthy, live healthy, and hope for the best. I am on a new protocol which I must say has given me the ability to lower my dosage of medication to be clear instead of taking 15 to 1800 mg of gabapentin and 100 mg a pregabalin. I am very stable at 1500 and 100 mg of pregabalin I am sleeping much better and I’m not constantly chasing the pain. It’s a horrible insidious condition but we do the best we can hope physical therapy helps you but do whatever it takes so that you can get through your day all the best.

Thank you. It is great to find a place to talk about this issue as it does seem that so many out there suffer from this. Mine is non-diabetic. I have good circulation they say but the feet are partially numb with no actual pain. I look forward to reading about the experiences of others who have to deal with this problem.

I have the same problem but so far have not found anything that will help, sorry to say, tried all kinds of supplements and creams to no avail

I so agree with your post. Absolutely no help from doctors. Well, they each added a supplement or offered something for pain which I am fortunate not to have. But, no one has offered encouragement or support.
I've since learned, from this support group and a lot of Googling, that movement is key. I started PT 2 weeks ago (which I had to ask for), and physical therapists are my rock. They encourage and help you set a goal.
My legs are already stronger. I just feel so much more hopeful. I believe the supplements, that I decided to take, may be helping in the sense that the numbness is not getting worse. Who knows? I am also eating much healthier and really watching sugars, although I am not diabetic. I know the numbness is not reversible and my goal is to slow any progression. Exercise and keep moving. And, keep sharing here.

Thank you for such a warm greeting. I am 65 and had a double mastectomy with Chemo last year. I finished treatment in May 2024, and started with Anastrozole and anemaciclib (Verzenio) in July. At the end of my chemo treatment neuropathy set in. Doctor told me it was temporary. It’s been almost a year. Now he is saying that it might be this way always. I’m so uncomfortable with it. The Verzenio causes some pretty harsh digestive issues and during some extreme bouts, my feet and hands feel like they are on fire. I believe I have had zero relief.
My first questions is if anyone has had improvements after a year and what have people found that helps relieve the discomfort?
Thanks.

My name is gus. I just joined the group. the recent EMG/Nerve conduction studies showed evidence of large fiber peripheral neuropaty along with cervical and lumbar radiculopathy. The pain, tingling, and numbness seem to be progressing fast. I had the last test today (autonomic testing) and will be seeing my neurologist on May 1st for next steps.

Hi @samalita59, Welcome to Connect. There is another discussion that you might find helpful -
Chemotherapy-induced neuropathy: What helps get rid of it? - https://connect.mayoclinic.org/discussion/chemotherapy-induced-neuropathy/.

The Foundation for Peripheral Neuropathy also has a webinar on chemo induced neuropathy that might be helpful - https://youtu.be/eNkDf9ezXFo.

Have you done any research on alternative treatments or therapies to help with the neuropathy symptoms?

Hello Gus @gus0557, Welcome to Connect. I'm hoping you get some answers when you see your neurologist next month. One of the best things you can do is be your own advocate for your health and learn as much as you can about your condition and what treatments are available that may provide some relief. The Foundation for Peripheral Neuropathy is a great place to start learning more about neuropathy and treatments that may offer some relief - https://www.foundationforpn.org/.

There are some discussions on large fiber neuropathy that you might find helpful. Here's a link to search results of Connect that lists the discussions - https://connect.mayoclinic.org/search/discussions/?search=large%20fiber%20neuropathy.

You also mentioned cervical and lumbar radiculopathy. Here's a search listing of the discussions and comments - https://connect.mayoclinic.org/search/discussions/?search=cervical%20and%20lumbar%20radiculopathy.