I have tried 80 hours of HBOT recently and found that it did help my neuropathy. Here is Canada, the HBOT cost was reasonable ($100CDN/hr); although I hear that it can be much more expensive in other places. When I started the HBOT my neuropathy pain was up to my waist (pin, needles, tingling, dull pain that is there 24/7 plus numbness and freezing/burning in my feet depending on whether I was standing or laying down). After the 80 hours, the neuropathy was below my knees and my legs were considerably stronger. If anyone if in Alberta, I can give you the contact name and phone number. Also: for SOME conditions, HBOT can be covered by our health care or a private plan; however, in my case it was NOt covered. I understand that open ulcers on the feet (caused by neuropathy) are covered by Alberta Health Care.
Thank you John, that’s good stuff. I am glad to have found this site. I will follow the dialogue closely and find the experiences people share helpful and informative. I am sure to join on the discussion going forward.
Derek
I have tried 80 hours of HBOT recently and found that it did help my neuropathy. Here is Canada, the HBOT cost was reasonable ($100CDN/hr); although I hear that it can be much more expensive in other places. When I started the HBOT my neuropathy pain was up to my waist (pin, needles, tingling, dull pain that is there 24/7 plus numbness and freezing/burning in my feet depending on whether I was standing or laying down). After the 80 hours, the neuropathy was below my knees and my legs were considerably stronger. If anyone if in Alberta, I can give you the contact name and phone number. Also: for SOME conditions, HBOT can be covered by our health care or a private plan; however, in my case it was NOt covered. I understand that open ulcers on the feet (caused by neuropathy) are covered by Alberta Health Care.
I am sciatic nerve pain in my left lower back, hip, leg and foot. Dull/shooting pain l, tightness and tingling in the left foot and right toes. Will stem cell help???
I am sciatic nerve pain in my left lower back, hip, leg and foot. Dull/shooting pain l, tightness and tingling in the left foot and right toes. Will stem cell help???
Hi, @kreisbmb - welcome to Mayo Clinic Connect. Since my understanding is that the pain, tightness and tingling you are experiencing are related to sciatic nerve pain and not neuropathy, I'd like to suggest you check out a couple of Connect threads on stem cell therapy:
I have been diagnosed with idiopathic neuropathy which means I’ve had all the tests and they can’t figure out what’s causing it so that makes me an idiot I guess. I have burning in my feet and ankles. It’s moving up unto my calves and thighs. Heat, burning. Pins, needles. I spent most of Monday night and Tuesday in the recliner with ice on my feet, calves, and thighs. The doctor wants to inject stem cells in my back and both my ankles.
Medicare won’t pay for the treatments.
I have been diagnosed with idiopathic neuropathy which means I’ve had all the tests and they can’t figure out what’s causing it so that makes me an idiot I guess. I have burning in my feet and ankles. It’s moving up unto my calves and thighs. Heat, burning. Pins, needles. I spent most of Monday night and Tuesday in the recliner with ice on my feet, calves, and thighs. The doctor wants to inject stem cells in my back and both my ankles.
Medicare won’t pay for the treatments.
Hello @neuroliz and welcone! I'm curious what kind of Dr you are referring to that is suggesting stem cells for neuropathy?
I have yet to find in my research (and I'm no Dr) that stem cell injections are a promising treatment however, I do understand the whole grasping at straws theory.
A bit about me...last year was my 3D year:
1. Diagnosis
2. Discovery
3. Decline
I spent the year panicking and in fear of what I was losing in my body on a daily basis. I was in denial, scraping and searching for any help or fix. This included lidocaine injections for over 5 months which were barely ever talked about in this forum. Nor were they outlined anywhere in treating my disease but, I was desperate for help and tried anyway.
My underlying cause of progressive small fiber polyneuropathy was B12 deficiency. Not to be pessimistic but, finding my cause did not get me ahead of my neuropathy. I might as well be idiopathic right along with you. This may not be true for all but, for me it is.
The lidocaine injections did nothing, bringing my b12 levels up did nothing, the nerve damage was done and it took a while for me to accept and come to terms with that. Each of us is very different and we all need to come to our own terms and that may take time to figure it all out.
I recommend a layered approach...learning as much as you possibly can, (watching @johnbishop recent you tube link on peripheral neuropathy), looking up government/fda findings, research studies by Dr. Anne Louise Oaklander, reading what others personal experiences have been, gathering tricks of the trade...then making educated decisions on what may work best for you, given your case and circumstances. Good communication with the proper Drs helps too.
Another layer is treatment approach...notable neuropathy meds, vitamins and supplements, eating a healthy nerve friendly diet, excercise/stretching that suits your abilities, mindfulness and meditation because the brain has potential to be our most powerful tool and influencer. Physical therapy, cognitive behavioral therapy, massage, acupuncture. Play around with it all to see what you may benefit from. Again, a layered approach.
It all sounds so easy to me now but, if some one told me this stuff in a nut shell last year, I would have been too overwhelmed to listen and apply exactly. It's up to each individual to navigate accordingly and like anything else in life sometimes it only works by trial and error.
I wish you clarity and easing of your pain. Hope that you will be your biggest and best advocate! We are here to help, support, encourage and comfort you. Best of luck on your journey. 🍀
I'm 69, and have idiopathic small fiber polyneuropathy and am in the early stage of autonomic neuropathy.
There's a very long list of medications a person could take that might relieve the burning pain of neuropathy. The list of medications most commonly used and are used specifically for neuropathy isn't that long. But a pain specialist has a long list of medications that are intended for treating other things, but will sometimes give relief from neuropathy pain (called off-label use).
Many people find a medication right off the bat that gives them relief. I'm unfortunately not part of that group. I've been trying one medication after another for a very long time. Some of them did nothing, some had unacceptable side effects, some of them helped with the pain but had unacceptable side effects, up to putting me in the hospital, some of them worked a little bit. My journey has included all of the above.
I found a few years ago that morphine sulfate contin made my pain more bearable, but I try to take as little as possible. Last fall my pain specialist moved on down his list to the next to the last medication, and I finally found something that helps noticably - imipramine. I still have days when the pain is up to 8, but it's not constant.
In June of 2017, I had a Burst DR spinal cord stimulator implant. A one week trial is required, and I had 80% relief! It was wonderful! I had forgotten how that had felt. A few weeks later I had the permanent implant and after the surgical site healed, I began a year of level 2-3 pain. After a year, the pain started returning, and since then I've been having the stimulator adjusted every 3 months. I know that it's still helping, but I experience pain at between 2 and 6, depending on what activity I'm doing. The next thing I'm considering is a dorsal root ganglion stimulator implant because it can target nerves with greater accuracy, working more specifically on the nerves involved.
So, that's what I've been doing for the neuropathy over the past ten years. The progression has been, first the tingling in my feet and legs, then added pain in the balls of my feet, becoming more of a burning pain, then it spread to include the top of my feet, to where it is now, from my toes to my ankles.
Did you have a similar onset? Have you tried any numbing cream or cbd oil? I suppose you've tried various medications - Gabapentin, Lyrica, etc. I've met with a number of specialists, some of them more helpful than others. I have a good pain specialist, who's been working with me for several years in, what I'm sure has been, a search for the magic pill. Some people have been having good success with medical marijuana, but my doctor has told me that if I decide to go that route he would no longer prescribe pain meds. So, that's out. But we all keep searching. I wish you well.
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Hello @jacksgarden, Welcome to Connect. I would be highly suspect of any neuropathy TV commercial and especially if they mention that they take Medicare. This is just my opinion based on my struggle to find something to help my small fiber peripheral neuropathy. I shared my story earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/
Are you able to share a little more about your neuropathy diagnosis and how long you have had it?
Hi, Im in Calgary. Would like to have more information please. thanks
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1 ReactionHello @ecc79, welcome to Mayo Clinic Connect. There is a post by @colleenyoung earlier in this discussion that has some really good information and links about stem cell therapy for neuropathy. Here is the post by Colleen - https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/
I attended a meeting on stem cell therapy for neuropathy at the Minnesota Neuropathy Association in August 2018. Here is a link to my post with notes on the meeting: https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/
@ecc79 are you considering stem cell treatment?
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2 ReactionsThank you John, that’s good stuff. I am glad to have found this site. I will follow the dialogue closely and find the experiences people share helpful and informative. I am sure to join on the discussion going forward.
Derek
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2 ReactionsSo the Hyperbaric chamber decrease your neuropathic pain?
I am sciatic nerve pain in my left lower back, hip, leg and foot. Dull/shooting pain l, tightness and tingling in the left foot and right toes. Will stem cell help???
Hi, @kreisbmb - welcome to Mayo Clinic Connect. Since my understanding is that the pain, tightness and tingling you are experiencing are related to sciatic nerve pain and not neuropathy, I'd like to suggest you check out a couple of Connect threads on stem cell therapy:
Groups>Chronic Pain > https://connect.mayoclinic.org/discussion/stem-cell-therapy-4/
Groups > Autoimmune Diseases > Stem cell therapy? > https://connect.mayoclinic.org/discussion/stem-cell-therapy-3/
I have been diagnosed with idiopathic neuropathy which means I’ve had all the tests and they can’t figure out what’s causing it so that makes me an idiot I guess. I have burning in my feet and ankles. It’s moving up unto my calves and thighs. Heat, burning. Pins, needles. I spent most of Monday night and Tuesday in the recliner with ice on my feet, calves, and thighs. The doctor wants to inject stem cells in my back and both my ankles.
Medicare won’t pay for the treatments.
-
Like -
Helpful -
Hug
3 ReactionsHello @neuroliz and welcone! I'm curious what kind of Dr you are referring to that is suggesting stem cells for neuropathy?
I have yet to find in my research (and I'm no Dr) that stem cell injections are a promising treatment however, I do understand the whole grasping at straws theory.
A bit about me...last year was my 3D year:
1. Diagnosis
2. Discovery
3. Decline
I spent the year panicking and in fear of what I was losing in my body on a daily basis. I was in denial, scraping and searching for any help or fix. This included lidocaine injections for over 5 months which were barely ever talked about in this forum. Nor were they outlined anywhere in treating my disease but, I was desperate for help and tried anyway.
My underlying cause of progressive small fiber polyneuropathy was B12 deficiency. Not to be pessimistic but, finding my cause did not get me ahead of my neuropathy. I might as well be idiopathic right along with you. This may not be true for all but, for me it is.
The lidocaine injections did nothing, bringing my b12 levels up did nothing, the nerve damage was done and it took a while for me to accept and come to terms with that. Each of us is very different and we all need to come to our own terms and that may take time to figure it all out.
I recommend a layered approach...learning as much as you possibly can, (watching @johnbishop recent you tube link on peripheral neuropathy), looking up government/fda findings, research studies by Dr. Anne Louise Oaklander, reading what others personal experiences have been, gathering tricks of the trade...then making educated decisions on what may work best for you, given your case and circumstances. Good communication with the proper Drs helps too.
Another layer is treatment approach...notable neuropathy meds, vitamins and supplements, eating a healthy nerve friendly diet, excercise/stretching that suits your abilities, mindfulness and meditation because the brain has potential to be our most powerful tool and influencer. Physical therapy, cognitive behavioral therapy, massage, acupuncture. Play around with it all to see what you may benefit from. Again, a layered approach.
It all sounds so easy to me now but, if some one told me this stuff in a nut shell last year, I would have been too overwhelmed to listen and apply exactly. It's up to each individual to navigate accordingly and like anything else in life sometimes it only works by trial and error.
I wish you clarity and easing of your pain. Hope that you will be your biggest and best advocate! We are here to help, support, encourage and comfort you. Best of luck on your journey. 🍀
Rachel
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5 ReactionsHi @neuroliz
I'm 69, and have idiopathic small fiber polyneuropathy and am in the early stage of autonomic neuropathy.
There's a very long list of medications a person could take that might relieve the burning pain of neuropathy. The list of medications most commonly used and are used specifically for neuropathy isn't that long. But a pain specialist has a long list of medications that are intended for treating other things, but will sometimes give relief from neuropathy pain (called off-label use).
Many people find a medication right off the bat that gives them relief. I'm unfortunately not part of that group. I've been trying one medication after another for a very long time. Some of them did nothing, some had unacceptable side effects, some of them helped with the pain but had unacceptable side effects, up to putting me in the hospital, some of them worked a little bit. My journey has included all of the above.
I found a few years ago that morphine sulfate contin made my pain more bearable, but I try to take as little as possible. Last fall my pain specialist moved on down his list to the next to the last medication, and I finally found something that helps noticably - imipramine. I still have days when the pain is up to 8, but it's not constant.
In June of 2017, I had a Burst DR spinal cord stimulator implant. A one week trial is required, and I had 80% relief! It was wonderful! I had forgotten how that had felt. A few weeks later I had the permanent implant and after the surgical site healed, I began a year of level 2-3 pain. After a year, the pain started returning, and since then I've been having the stimulator adjusted every 3 months. I know that it's still helping, but I experience pain at between 2 and 6, depending on what activity I'm doing. The next thing I'm considering is a dorsal root ganglion stimulator implant because it can target nerves with greater accuracy, working more specifically on the nerves involved.
So, that's what I've been doing for the neuropathy over the past ten years. The progression has been, first the tingling in my feet and legs, then added pain in the balls of my feet, becoming more of a burning pain, then it spread to include the top of my feet, to where it is now, from my toes to my ankles.
Did you have a similar onset? Have you tried any numbing cream or cbd oil? I suppose you've tried various medications - Gabapentin, Lyrica, etc. I've met with a number of specialists, some of them more helpful than others. I have a good pain specialist, who's been working with me for several years in, what I'm sure has been, a search for the magic pill. Some people have been having good success with medical marijuana, but my doctor has told me that if I decide to go that route he would no longer prescribe pain meds. So, that's out. But we all keep searching. I wish you well.
Jim
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3 Reactions