Living with Neuropathy - Welcome to the group

Hi Cecilia19,
I am in tears as I read your message. Finally someone that has experienced the same thing . I too developed neuropathy in my feet from plantar fasciitis 4 years ago. I was on lyrica for it The immediate thought of my doctor and the specialist was to increase the lyrica. This is presently at 600mg and not working. The immediate plan is to lower one dose of the lyrica for a week , then add trileptal.
I have felt so alone with the trigemenal neuropathy. You can't explain it to anyone. It took so long to diagnose. You know the excruciating pain.
Thank you so much for
reaching out.
The specialist did mention amitriptaline. Would it be possible for us to connect over zoom or a phone call?
I have so many questions.
I am certainly in a dark place and trying to cope . I have an acupuncturist whom I am seeing tomorrow. I am wondering what sort of treatment you get done.
I greatly look forward to connecting further.
Thank you, thank you.

I know what it is as I get shots down my leg & it makes me jump. Bad spasms & I want to scream sometimes but when it happens in my apartment I do scream

I have been managing my pain/neuropathy for 10 years using Pregablin (100mg 2x day) and Cymbalta 90mg 1x day (I have to take a 60 and 90 since they do not make a 90). I have found that this has been very successful but I had to taper down the Lyrica slowly to find where I was being helped. FYI after 10 years of IvIG I am now in remission but still maintaining my meds. I will probably always need the meds but without infusions I am so happy.

My neuropathy is so minor compared to what I see here that I feel funny about speaking up. I have PMR and that’s so much more of a concern for me. But the neuropathy in my legs seems to be getting worse so I’m trying to be more informed.

Hi @allisahe, PMR always bothered me more than my neuropathy symptoms but I only have numbness and a little tingling with the neuropathy. I'm just happy my PMR is back in remission and I'm hoping it stays that way. Learning more about neuropathy and staying informed is definitely a good thing to do. Not sure if you have seen the Foundation for Neuropathy site but it's great for staying informed - https://www.foundationforpn.org/living-well/. They also have a a great resource library - https://www.foundationforpn.org/resource-library/.

Hi--I'm glad to be part of this group! I was diagnosed with idiopathic neuropathy about three years ago and soon added foot drop. I walk like Popeye after he's had a few. On longer walks, I use hiking poles but cover as much distance side to side as I do going forward. Before neuropathy, I'd completed two marathons and a couple dozen half-marathons. I've got a drawer full of medals (everybody gets one) but I'd trade them all for a good pair of shoes!

Thanks. I’ll take a look.

John: I am Susan Schloth & a member of this Neuro group. Colon cancer in remission simce 3/24. Living in Ecuador many years, U.S. expat. Please add me. MUCHAS GRACIAS! Susan

Welcome @chawk, You are not alone. Many of us with neuropathy walk a little like Popeye. I also use trekking poles if I'm out for a longer walk. They help me keep a better posture while walking. Lots of folks with neuropathy searching for that magic shoe that provides comfort and a little stability. I go back and forth between my Orthofeet shoes which have more cushion for my feet and a wide toe box to my more uncomfortable shoes that let me feel the ground a little better but have almost no padding - Birchbury minimalist barefoot type shoes that seem to help my balance a little better.

There are some discussions and comments on what shoes are best for neuropathy. Here's a link if you want to scan through them - https://connect.mayoclinic.org/search/

Hi Susan @sueb4bs, It's great to hear that your colon cancer is in remission! Since you have already joined Connect there is no need to be added to the neuropathy group. You are automatically added when you posted to this discussion on neuropathy. If you are interested in following other discussions on neuropathy, here is a link that lists discussions in the Neuropathy Support Group - https://connect.mayoclinic.org/group/neuropathy/