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.

@duaneh23

After years of pain in my body back, knee, feet, neck and hands I was diagnosed in September with a Severe case of neuropathy. it as even gotten to my Facial muscles. for the last couple years I started feeling a Vibration in my body thinking my Massager in my recliner was bad I unplugged the recliner realizing that was not it plugged it back in. My Neurologist increased my Gabapentin to 1200MG 3 times daily. makes me a little light headed but it has taken care of the Vibration but I do feel the the Tinging. I have had injection for my Knee pain, Hand pain, and back pain all has failed.
My question is because of my Neuropathy could this be why all the injection for pain reliver failed to ease my pain. NO I do not plan on going back for more. I do not take Pain Medication. I am a Disabled Veteran no support from my VA.

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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?

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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

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@irishnanny3

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

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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/

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@johnbishop

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?

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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

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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.

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@sallymagint

Thank you Colleen and John, I'm hoping I can learn as much as possible about Neuropathy and how others are living with and managing their symptoms effectively.
From my point of view the care and treatment provided by my medical team is likely to have more positive outcomes if have a positive approach and try to help myself as much as I can -I guess it's a team approach and I'm a vital player. It's not easy, in fact it's damn hard a lot of the time and some days I wonder how I'm going to get through it but I don't have any other option.
I have a numbee of medical conditions which leave me with a fair amount of neuropathy. I have altered sensations in most parts of my body affecting my sensitivity to temperature, pain, touch, taste, smell. My legs, arms and extremities have significant weakness and a degree of paralysis which may or may not be permanent. I'm in the process of undergoing treatment with neurosurgery planned in the not to distant future. It's hopeful surgery will reduce the risk of further permanent damage and then the focus will be on retraining/repairing the brain. There's no guarantees and it's still a long road to travel but I'm crossing my fingers I can reverse some of the damage.
Thank you so much for giving me the opportunity to talk about my situation. Although I haven't delved into it too much due to the complexity, it's helpful to chat about the neuropathy part of it.
I live in Australia and knowledge/experience amongst the medical profession about my conditions is limited. It has made it very tough and I've been confronted with a fair amount of ignorance. It is soul destroying when you know there is something wrong but you're made to feel it's in your head. But I'm not giving up, I can't give up and through perseverance I've found some amazing specialists who are familiar and experienced and are hopeful they can help me. And I want to raise as much awareness as I can. Awareness is power and power makes change. If less people experience the degree of emotional trauma like myself and others have faced simply by increasing education and knowledge, it can only be a win for all involved

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Consider the spinal stimulator . You should pain doctor and or a neurosurgeon.

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@donaldcohen

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.

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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?

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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.

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@donaldcohen

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.

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sorry-am on too many Tramadol I guess- what is MJ?

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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!!

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