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?
Interested in more discussions like this? Go to the Neuropathy Support Group.
Hello @duaneh23, Welcome to Connect. It sounds like you may have additional health conditions other than neuropathy also causing you some pain. I'm sorry to hear that you are not getting support from the VA. It's good to learn as much as you can about neuropathy and what treatments may be helpful. If you haven't already seen it, the Foundation for Peripheral Neuropathy has a lot of good information on their site - https://www.foundationforpn.org/living-well/.
Is all of your healthcare done through a local VA Hospital or are you able to seek help at a teaching hospital or major health facility?
Have been hoping someone could relate ideas to treat the neuropathy I have had since six weeks post my ischemic stroke in 2018. It affects the entire left side of my body. Been treated with multiple meds .. anti convulsants, anti anxiety etc
as well as acupuncture, med marijuana, tens devices, PT,
pain management drs unable to find answer, neurologist tries very hard, but unsuccessful
It’s called central pain syndrome. Any suggestions appreciated. My stroke was caused by undiagnosed PV
Welcome @irishnanny3, I think you might find the following discussions helpful since you mentioned central pain syndrome.
--- Central neuropathy?: https://connect.mayoclinic.org/discussion/central-neuropathy/
--- Central Sensitization - please share your stories: https://connect.mayoclinic.org/discussion/central-sensitization-please-share-your-stories/
--- Has anyone been diagnosed with Central Sensitization?: https://connect.mayoclinic.org/discussion/has-anyone-been-diagnosed-with-central-sensitization-if-so-id-like-to/
well first of all you are Very correct there are many more health issues. Now I have what is call Commuity Care. President Trump when he was in office he approved it for us to get treatment outside of VA. Most of my treatment is with Baylor Scoot and White it is because of my New Neurologist she had a Nerve test performed, The test was so bed they came out with the results of Serve AXONAL Neuropathy. I have Cervical Damage, Neurofibroma, Nerve damage. All these are on the Left side.
I believe it all came from the Vaccine I received when in the Military Feb. 18, 1976 when the Swine Flu first came to America it hit Fort Dix New Jersey. The Governments use us Soldiers to for an Experimental Vaccine. I started having problems 3-4 weeks after the vaccine it first started with Digestive attack then my nerves and Muscles start.
These are from surgeries Shoulders problems, Right Hand problem. There isn't a part of my body that isn't having problems. The pain management doctor said the only choices I have is a Spinal stimulator or what I am taking now Gabapentin 3600MG, 1200 MG x3 daily
Thank you for your REPLY
I have had neuropathy since age 35. I am now 71. I think that it resulted from a severe Lyme infection. I was diagnosed with Idiopathic Neuropathy. Early on, it led to foot injuries, IV ANTIBIOTICS and several surgeries. Both feet are completely numb.
I saw a chiropractor who charged a lot of money basically used a ten’s machine and a foot soak. No benefit. I now have a spinal stimulator that has provided significant benefit . My left has been treated and expect to have the right foot protected. I frequently experience throbbing pain in fourth toe on Right foot. I am now using MJ. This is the only thing that works.
Consider the spinal stimulator . You should pain doctor and or a neurosurgeon.
Welcome @donaldcohen, Thanks for sharing your experience with a spinal stimulator. It's good to hear that it has provided significant pain relief for you. There are quite a few discussions and posts on spinal stimulators if you want to connect with others using the devices - here is a search results link that lists the discussions and comments: https://connect.mayoclinic.org/search/?search=spinal+stimulator.
Do you mind sharing what type of spinal cord stimulator you have and how long you've had it?
I would like to know that also since I had two different spinal cord stimulator tests and neither made any difference in the pain at all. I have a pain specialist that I really like; but, he is almost at his wit's end trying to help me.
sorry-am on too many Tramadol I guess- what is MJ?
For any of you that take Pregabalin rather than gabapentin - would you please share what mg you take and when?
I have started taking 1 x 100 mg at night and 1 x 25 mg in the morning. I don't know if weight is considered re: how much and when; but, I am sure not pain free!!