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Living with Neuropathy - Welcome to the group
Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.
I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.
We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?
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@debsv I've been through a bad ankle fracture and had some angry tendons for quite a while. What I learned was that I needed to work on all the muscles of the lower leg to release all the tightness. When I equalized the tension on all sides of my ankle, it relieved the pain because then it wasn't exerting extra force on an injured tendon. What helped was myofascial release. Typically strengthening exercises would make it worse, so rehab was a balance of both of these.
Here is our discussion on MFR
Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
There is a provider search at https://mfrtherapists.com/
Have you heard of myofascial release before?
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2 ReactionsHi,
I look forward to learning from everyone and sharing my experiences. Also, to meet people that will know what neuropathy is like.
I have neuropathy in both feet. Pain like needles and pins and my left toes are particularly bothersome. It keeps me awake at night.
Welcome @dudi1327, It's the pits when you have neuropathy but even worse when it keeps you awake at night. I know it's not much comfort but you are not alone with the symptoms. You might find it helpful to read what others have shared in these related discussions:
-- Peripheral Neuropathy - Shooting Foot Pains at Night
https://connect.mayoclinic.org/discussion/peripheral-neuropathy-shooting-foot-pains-at-night/
-- Neuropathy Pain at Night: What helps?
https://connect.mayoclinic.org/discussion/night-pain-2/
Have you been diagnosed with neuropathy? Have you tried any treatments?
Welcome Janet @janetsf - You've come to the right place. We are a large community of folks who have been drafted into the neuropathy. I shared my story in another discussion here - https://connect.mayoclinic.org/comment/310341/. You might want to scan through the other discussions in the Neuropathy Support Group to find topics that you want to know more about. Here's a list of the discussions - https://connect.mayoclinic.org/group/neuropathy/.
The best thing we can do to help ourselves is learn as much as we can about our condition and what treatments are available that might provide some relief. One of my favorite sites for learning more is the Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/. They also have a YouTube channel where they store previous webinars on neuropathy topics that you might find easier than reading - https://www.youtube.com/@foundationforperipheralneu4122.
Do you mind sharing more about your diagnosis and symptoms?
Hi, I've been a type 1 Diabetic for 43 years! Neuropathy started about 18 months ago and getting worse and worse. Had tried all the pills recommended but they all zombified me. Also try a TENS machine from time to time, but don't think it helps. My feet now swelling at times. Been recommended CBT oil. Anyone using it? If so what dosage, what type, when (night-time I guess). Take codeine now at night for 4 - 5 hours sleep. Any comments welcome and we could then go into more detail. Best wishes, barbara s.