Living with Neuropathy - Welcome to the group

Thank you for adding me to this group. I have been reading the different topics and found some interesting info and topics. My neuropathy started quite suddenly 4 years ago just prior to a tumor was removed from my left knee (benign) that was attached to a nerve. I connected the PN to an MRI with Gadolinium contrast which affected my entire body including the beginning of neuropathy in both feet. I immediately did a detox regimen with a naturopath and some acupuncture (not sure if that helped me or not). I have also tried many many supplements, laser therapy (10 sessions), red light therapy and hyperbaric oxygen, and massage heat boots. Now after having joined this group I read that statins can cause DM and PN so I have gone off of my statins for 2 weeks, still no relief yet. My left foot is worse due to the surgery and symptoms exacerbate at night. I continue to search for healing. As a physical therapist I do water aerobics or water work outs 2-3 days a week as this tamps down the nerve pain and there is no pounding on my feet. I use CBD topical on my feet nightly and sometimes Voltaren. Full disclosure my son makes the CBD so I get if from him.
I am unable to comfortably wear sneakers or any closed shoe so I limit that. I do walk, play pickleball and ride my bike, elliptical and weight lifting upper body. My other acitivites from my former life long distance hikes and long bike rides are over. I cannot say that any of the above treatments truly caused any healing. I am interested in the Winsantor PN topical if it comes to market I will try that. Thank you for your comments and support

Please post your progress if you don’t mind sharing.

So after my spinal cord surgery to remove a cyst off my nerve endings in my lower back I had a great reduction of back pain but it seems that the neuropathy in my hands fingers and wrist has taken off like a rocket. The pain in the feet is still constantly running between a 6 and a 8 daily a new twist has been in my calves where it feels like someone left a tinsel machine on high and it's nothing but electrical current. My legs will twitch at times and even just shoot up very quickly like a major muscle spasm. The neurologist is wanting to use a spinal cord stimulator as a added tool for me. I am concerned that the stimulator would mask the pain and I would not know if it is my back issues or the neuropathy issues. Have or do any of you currently have a spinal stimulator and if so what are your thoughts and opinions on this? I am growing more agitated daily as my physical abilities seem to disappear right before my eye's. As I said I am 58 and a retired military vet with 23 years of service. I'm in pretty good shape still coming in at 6 foot tall averaging between 180 and 192 in weight. So I am not overweight nor do I have diabetes. The pain is semi controlled by Morphine and Gabapentin. I have used acupuncture I have had shots to my back and have tried a trove of things between the VA and civilian Drs affiliated with the Carillon network. I have found a little relief in a change of shoes. I have gone with the sketchers extra wide slip on shoes. They are the only shoes I can keep on for more then 2 hours. Also has anyone heard of the neuropathy in the hands being just like carpal tunnel symptoms? The pain in my wrist this past week was overwhelming. One thing my wife did find that gives a quick temporary relief is Aleve Cream. I have used it on both feet and hands with limited success. I seem to always have more questions then I do answers so thank you for any and all input.
Sincerely Daryle

So after my spinal cord surgery to remove a cyst off my nerve endings in my lower back I had a great reduction of back pain but it seems that the neuropathy in my hands fingers and wrist has taken off like a rocket. The pain in the feet is still constantly running between a 6 and a 8 daily a new twist has been in my calves where it feels like someone left a tinsel machine on high and it's nothing but electrical current. My legs will twitch at times and even just shoot up very quickly like a major muscle spasm. The neurologist is wanting to use a spinal cord stimulator as a added tool for me. I am concerned that the stimulator would mask the pain and I would not know if it is my back issues or the neuropathy issues. Have or do any of you currently have a spinal stimulator and if so what are your thoughts and opinions on this? I am growing more agitated daily as my physical abilities seem to disappear right before my eye's. As I said I am 58 and a retired military vet with 23 years of service. I'm in pretty good shape still coming in at 6 foot tall averaging between 180 and 192 in weight. So I am not overweight nor do I have diabetes. The pain is semi controlled by Morphine and Gabapentin. I have used acupuncture I have had shots to my back and have tried a trove of things between the VA and civilian Drs affiliated with the Carillon network. I have found a little relief in a change of shoes. I have gone with the sketchers extra wide slip on shoes. They are the only shoes I can keep on for more then 2 hours. Also has anyone heard of the neuropathy in the hands being just like carpal tunnel symptoms? The pain in my wrist this past week was overwhelming. One thing my wife did find that gives a quick temporary relief is Aleve Cream. I have used it on both feet and hands with limited success. I seem to always have more questions then I do answers so thank you for any and all input.
Sincerely Daryle

Hello @mrsirishod, Welcome to Connect, I am not sure if your post was for me or for everyone since it wasn't done using the Reply button under a specific post. I posted my neuropathy journey in another discussion here - Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/comment/310341/.

Have you been diagnosed with neuropathy? Do you mind sharing any treatments you have found helpful?

Unfortunately I being a Veteran get most of my care from the VA. Their treatment consist of taking my blood doing a urine test and keeping me on gabapentin and morphine as well as various muscle relaxers. I have tons of questions and get no answers from the VA yet I know that I can't be the only Veteran that suffers from this. Suffering is what we do because I have not yet found anything more painful then nerves dying in my body. I have never had something that affected my whole body the way this does. I ask has anyone else here had it affect their bowels? Mine was until the back surgery to get the pressure off the nerve. There has got to be something better then a spinal cord stimulator as yes it may help with the pain but does nothing to work on the disease so the day your nerves completely die the stimulator is nothing but a paper weight. I guess that's it for today. Depression from this sucks though

I have a similar question. After I had Covid, I developed Sibo. I am wondering if this small intestinal bacterial overgrowth infection possibly could have caused my small fiber polyneuropathy? It’s hard to know the relationships - Did the Covid cause the SIBO, did the COVID cause the Peripheral Neuropathy, did the SIBO cause the or a Peripheral Neuropathy or is it all idiopathic and these are unrelated complaints? Or do I simply stop wondering and just except things as they are, and treat the symptoms? Anybody else have any thoughts?