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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 48 minutes ago | Replies (5992)

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@johnbishop

Hello @jessamyn, Welcome to Mayo Clinic Connect. I know it must extremely difficult being an only child and not knowing what to do to help your mother. Thank you for being her advocate in getting help. We recently had a member share her experience with the Mayo Clinic Pain Rehabilitation Center that may be helpful if that would be an option. Each of the Mayo Clinic Campus has one, if the Arizona campus is an option.

Here is the post shared by the member - https://connect.mayoclinic.org/discussion/mayo-pain-rehabilitation-program/?pg=1#comment-439036

Here's the Mayo Clinic Pain Rehabilitation Center page that describes the program - https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/featured-programs/gnc-20481713

There is also a discussion on CRPS that you might want to read what others have shared.
- CRPS - anyone suffering with complex regional pain syndrome: https://connect.mayoclinic.org/discussion/crps-anyone-suffering-with-chronic-repetative-pain-syndrome/

I'm sure that looking at all of your Mom's medications is part of any pain clinics process. Do you know what diagnosis was given by the doctors for the medications your mom is taking?

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Replies to "Hello @jessamyn, Welcome to Mayo Clinic Connect. I know it must extremely difficult being an only..."

Thank you for this. She hasn't had much of a diagnosis besides fibromyalgia. she hasn't wanted to get a neuropathy test because she feels like it might trigger more neuropathy. She has a primary care doctor and we had been using a medical advocate which I think I might look into doing again. They have also been discussing getting her some palliative care even though she is not dying. This seems like a very helpful group. I also had been going to a caretaker support group for a while before COVID, but didn't find very many other people who had parents as young as my mom. She is only 66! She has had pain since I was 8 and she got a Traumatic Brain Injury and everything kind of spiraled down hilll after that, but she has been able to manage her pain until this past year when it became neuropathic. She got into the SCIPP program at Stanford, but decided she wasn't interested in going because it wasn't focused on diagnostics, mostly just on managing pain meds, but I am not so sure that we shouldn't just have her go there for a week because they have a psychiatrist and PT and NP.... Thanks for reading!