I too am suffering from nondiabetic neuropathy. NO ANSWER anywhere just physicians pushing all sorts of drugs with huge side effects especially if you are older like me (82years young) I have been everywhere done everything and spent a fortune with false hopes. Tons of tries with physical therapy that made me worse not better as I have age degenerative meniscus tears and osteoarthritis in the knees not operable as I do not have bone on bone. So I am now being approved for Medical Marijuana. This road will take a long time to get the proper strain and dose level at a great cost. It is not a cure but if the level eventually becomes correct it will reduce the pain level. That is all I can ask for. There is a new therapy hopefully coming on the market after more trials it is low laser therapy. It is an interesting read. So for the younger people on this site, there is hope on the horizon. GOd BLess you all
Vicki
Yes, I am definitely one of the older ones at 86. However this condition often limits me as to how much physical work I can do. The rest of my body is still willing and able to do my yard work, and we do have a large yard. I will also be looking into CBD oil! Good luck with yours and let us know how it goes.
I too am suffering from nondiabetic neuropathy. NO ANSWER anywhere just physicians pushing all sorts of drugs with huge side effects especially if you are older like me (82years young) I have been everywhere done everything and spent a fortune with false hopes. Tons of tries with physical therapy that made me worse not better as I have age degenerative meniscus tears and osteoarthritis in the knees not operable as I do not have bone on bone. So I am now being approved for Medical Marijuana. This road will take a long time to get the proper strain and dose level at a great cost. It is not a cure but if the level eventually becomes correct it will reduce the pain level. That is all I can ask for. There is a new therapy hopefully coming on the market after more trials it is low laser therapy. It is an interesting read. So for the younger people on this site, there is hope on the horizon. GOd BLess you all
Vicki
I am with you although I will be 91 this month. I have had the non diabetic PN for about six years. As you say nothing works. I just quit physical therapy as it made matters worse. I will keep looking!
Barry
I too am suffering from nondiabetic neuropathy. NO ANSWER anywhere just physicians pushing all sorts of drugs with huge side effects especially if you are older like me (82years young) I have been everywhere done everything and spent a fortune with false hopes. Tons of tries with physical therapy that made me worse not better as I have age degenerative meniscus tears and osteoarthritis in the knees not operable as I do not have bone on bone. So I am now being approved for Medical Marijuana. This road will take a long time to get the proper strain and dose level at a great cost. It is not a cure but if the level eventually becomes correct it will reduce the pain level. That is all I can ask for. There is a new therapy hopefully coming on the market after more trials it is low laser therapy. It is an interesting read. So for the younger people on this site, there is hope on the horizon. GOd BLess you all
Vicki
Low-level laser therapy. At present, they are discussing it for Diabetics. Results are still inconsistent. Do your homework and watch for trials. They will eventually perfect it. It is good to know things are being worked on. RESEARCH, RESEARCH, RESEARCH. Always get your information from reputable medical centers. Stay in touch with Mayo Clinic, Cleveland Clinic, and John Hopkins. Stay away from chiropractors that claim they have a cure!!!! If you are younger ( I am 82) have faith. Start on Google get familiar with it then consistently call the major centers to find out if they have trials.
We are all suffering so badly. Just so you know I have been cleared for medical marijuana There has been progress with that but be sure you speak to a pharmacist at a dispensary, not a salesperson about the different strains and starting levels. It is a tuff journey here also as getting the right strain and dosage level is not an easy task. Costly as well but here in Pennsylvania prices have come down. A pharmacist makes a 30-minute appointment with you to start. You have to be cleared by a physiatrist then you get your card from the state of Pennsylvania which costs $50.00. The card is good for one year and then you can renew but you have to return to the physiatrist. This marijuana is medical marijuana, not the one that makes you high. Not the oil pill form.
The best to you always,
Vicki
I am with you although I will be 91 this month. I have had the non diabetic PN for about six years. As you say nothing works. I just quit physical therapy as it made matters worse. I will keep looking!
Barry
Hi Barry, I went through tons of physical therapy wasting time and Medicare money that should have been put to better use. Check my other postings on the new research out you might be interested in at least reading about it. Take care of yourself. Vicki
I am 45 and have non-diabetic neropathy. In my youth I was a gymnast for 10 years, and a soccer player for 10 years. At 36 I had to have 3 plates and 7 screws in my left foot to repair old injuries. I also have a total knee replacement in my right knee. Although I was fully vaccinated, I got COVID 3 times. After the last bout of it, I started getting burning, tingling, stabbing, and weird numbness (numb, but not numb) feeling. I have loss of feeling going up to my knees in both legs. I also have lower back and leg pain.
I'm adopted so it's hard to determine if it's hereditary or not. I've heard that my bio father is diabetic, but I've been tested and that is not the case. I am in no way saying COVID is to blame, but it's weird that the symptoms of neropathy inconveniently showed up just after I had it. I work out 4-5 days a week and it is painful after every workout, but I'm in pain every day whether I work out or not. So I choose to try and stay healthy.
I have been an active person my whole life and it is heartbreaking to feel this helpless to fix the debilitating daily pain. I will not do opiates, as they are only a band-aid and are more harmful to my health.
I started to see a neurologist and have tried everything drug companies offer. Lyrica, gabapentin, topicals, compounded pharmacy remedies, etc. I am a great candidate for a spinal chord stimulator, and I'm in the process of getting approved. I have done the psychological evaluation, I'm getting my MRI's (thoracic and lumbar), and have spoken to reps from Abbot and Nevro. I've decided that I'd like to try the Nevro. It is ultra high frequency and has the best results for pain relief that I've read about. I've also read that people don't feel the buzzing (MORE pins and needles feelings) that the lower frequency Abbot causes (paresthesia). I'm going this route because I want my quality of life back without the side effects of drugs that will also take away from my daily activities.
Has anyone else considered this option or has had this implant? I'm curious about your results. Or any other advice for that matter.
Thanks!
I am 45 and have non-diabetic neropathy. In my youth I was a gymnast for 10 years, and a soccer player for 10 years. At 36 I had to have 3 plates and 7 screws in my left foot to repair old injuries. I also have a total knee replacement in my right knee. Although I was fully vaccinated, I got COVID 3 times. After the last bout of it, I started getting burning, tingling, stabbing, and weird numbness (numb, but not numb) feeling. I have loss of feeling going up to my knees in both legs. I also have lower back and leg pain.
I'm adopted so it's hard to determine if it's hereditary or not. I've heard that my bio father is diabetic, but I've been tested and that is not the case. I am in no way saying COVID is to blame, but it's weird that the symptoms of neropathy inconveniently showed up just after I had it. I work out 4-5 days a week and it is painful after every workout, but I'm in pain every day whether I work out or not. So I choose to try and stay healthy.
I have been an active person my whole life and it is heartbreaking to feel this helpless to fix the debilitating daily pain. I will not do opiates, as they are only a band-aid and are more harmful to my health.
I started to see a neurologist and have tried everything drug companies offer. Lyrica, gabapentin, topicals, compounded pharmacy remedies, etc. I am a great candidate for a spinal chord stimulator, and I'm in the process of getting approved. I have done the psychological evaluation, I'm getting my MRI's (thoracic and lumbar), and have spoken to reps from Abbot and Nevro. I've decided that I'd like to try the Nevro. It is ultra high frequency and has the best results for pain relief that I've read about. I've also read that people don't feel the buzzing (MORE pins and needles feelings) that the lower frequency Abbot causes (paresthesia). I'm going this route because I want my quality of life back without the side effects of drugs that will also take away from my daily activities.
Has anyone else considered this option or has had this implant? I'm curious about your results. Or any other advice for that matter.
Thanks!
Hi @rayjay, Welcome to Connect. I have idiopathic small fiber PN but had it years before getting COVID after being vaccinated. I shared my story in another discussion here - https://connect.mayoclinic.org/comment/310341/. Since you mentioned you are considering a spinal cord stimulator I thought you might want to see these related discussions.
Hi, I am in this same boat with non diabetic neuropathy and no one has found an answer for me as to the cause. So it sounds like medication might be the only answer for managing the pain. It certainly hinders my normal activities such as yard work etc. I am on Gabepenten which helps a bit, but I resist going on something stronger .
I would really appreciate it if you could share publicly what works for you. Thanks.
@user_ch98d0b5c . Good evening Ann. “Trauma” is the cause of my SFN (small fiber neuropathy). The trauma has been the result of numerous accidents, injuries, and surgeries. I use only medical cannabis for pain and discomfort. My mornings begin with a 1:1 CBD/THC tincture and my evenings end with a 2:1 CBD/THC tincture at bedtime. I have been using some form of medical cannabis for about 10 years. Adjustments have been made as my SFN has progressed or the barometric pressure inches its way down below 30.00.
I also use daily mindfulness and meditation. Then there must always be stretch yoga along with stability and balance exercises as prescribed by my physical therapist at Mayo Clinic. Twice a week I go for a Myofascial Release therapy session to relieve the restriction in the fascia tissue around my body.
I do take duloxetine for anxiety and depression plus 600 mg of gabapentin at bedtime for the tingle-tangles in my hands. I am trying a new anxiety medication in addition to the duloxetine, Bisphosorine, and it is working well to keep me from getting into the sequence of anxiety which produces pain, and then pain produces more anxiety. I abhor getting into that merry-go-round of symptoms because it is difficult to catch up with some form of relief.
Is this what you wanted to know? You must remember that with a progressive condition like neuropathy, you need to frequently make adjustments to the treatment program you have chosen.
What are you in need of right now?
May you be safe, protected, and free of inner and outer harm.
Low-level laser therapy. At present, they are discussing it for Diabetics. Results are still inconsistent. Do your homework and watch for trials. They will eventually perfect it. It is good to know things are being worked on. RESEARCH, RESEARCH, RESEARCH. Always get your information from reputable medical centers. Stay in touch with Mayo Clinic, Cleveland Clinic, and John Hopkins. Stay away from chiropractors that claim they have a cure!!!! If you are younger ( I am 82) have faith. Start on Google get familiar with it then consistently call the major centers to find out if they have trials.
We are all suffering so badly. Just so you know I have been cleared for medical marijuana There has been progress with that but be sure you speak to a pharmacist at a dispensary, not a salesperson about the different strains and starting levels. It is a tuff journey here also as getting the right strain and dosage level is not an easy task. Costly as well but here in Pennsylvania prices have come down. A pharmacist makes a 30-minute appointment with you to start. You have to be cleared by a physiatrist then you get your card from the state of Pennsylvania which costs $50.00. The card is good for one year and then you can renew but you have to return to the physiatrist. This marijuana is medical marijuana, not the one that makes you high. Not the oil pill form.
The best to you always,
Vicki
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Yes, I am definitely one of the older ones at 86. However this condition often limits me as to how much physical work I can do. The rest of my body is still willing and able to do my yard work, and we do have a large yard. I will also be looking into CBD oil! Good luck with yours and let us know how it goes.
I am with you although I will be 91 this month. I have had the non diabetic PN for about six years. As you say nothing works. I just quit physical therapy as it made matters worse. I will keep looking!
Barry
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What is the "new therapy" that you noted?
Tom
Low-level laser therapy. At present, they are discussing it for Diabetics. Results are still inconsistent. Do your homework and watch for trials. They will eventually perfect it. It is good to know things are being worked on. RESEARCH, RESEARCH, RESEARCH. Always get your information from reputable medical centers. Stay in touch with Mayo Clinic, Cleveland Clinic, and John Hopkins. Stay away from chiropractors that claim they have a cure!!!! If you are younger ( I am 82) have faith. Start on Google get familiar with it then consistently call the major centers to find out if they have trials.
We are all suffering so badly. Just so you know I have been cleared for medical marijuana There has been progress with that but be sure you speak to a pharmacist at a dispensary, not a salesperson about the different strains and starting levels. It is a tuff journey here also as getting the right strain and dosage level is not an easy task. Costly as well but here in Pennsylvania prices have come down. A pharmacist makes a 30-minute appointment with you to start. You have to be cleared by a physiatrist then you get your card from the state of Pennsylvania which costs $50.00. The card is good for one year and then you can renew but you have to return to the physiatrist. This marijuana is medical marijuana, not the one that makes you high. Not the oil pill form.
The best to you always,
Vicki
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3 ReactionsHi Barry, I went through tons of physical therapy wasting time and Medicare money that should have been put to better use. Check my other postings on the new research out you might be interested in at least reading about it. Take care of yourself. Vicki
Make sure you eat something when you use THC, good advice!
I am 45 and have non-diabetic neropathy. In my youth I was a gymnast for 10 years, and a soccer player for 10 years. At 36 I had to have 3 plates and 7 screws in my left foot to repair old injuries. I also have a total knee replacement in my right knee. Although I was fully vaccinated, I got COVID 3 times. After the last bout of it, I started getting burning, tingling, stabbing, and weird numbness (numb, but not numb) feeling. I have loss of feeling going up to my knees in both legs. I also have lower back and leg pain.
I'm adopted so it's hard to determine if it's hereditary or not. I've heard that my bio father is diabetic, but I've been tested and that is not the case. I am in no way saying COVID is to blame, but it's weird that the symptoms of neropathy inconveniently showed up just after I had it. I work out 4-5 days a week and it is painful after every workout, but I'm in pain every day whether I work out or not. So I choose to try and stay healthy.
I have been an active person my whole life and it is heartbreaking to feel this helpless to fix the debilitating daily pain. I will not do opiates, as they are only a band-aid and are more harmful to my health.
I started to see a neurologist and have tried everything drug companies offer. Lyrica, gabapentin, topicals, compounded pharmacy remedies, etc. I am a great candidate for a spinal chord stimulator, and I'm in the process of getting approved. I have done the psychological evaluation, I'm getting my MRI's (thoracic and lumbar), and have spoken to reps from Abbot and Nevro. I've decided that I'd like to try the Nevro. It is ultra high frequency and has the best results for pain relief that I've read about. I've also read that people don't feel the buzzing (MORE pins and needles feelings) that the lower frequency Abbot causes (paresthesia). I'm going this route because I want my quality of life back without the side effects of drugs that will also take away from my daily activities.
Has anyone else considered this option or has had this implant? I'm curious about your results. Or any other advice for that matter.
Thanks!
-
Like -
Helpful -
Hug
1 ReactionHi @rayjay, Welcome to Connect. I have idiopathic small fiber PN but had it years before getting COVID after being vaccinated. I shared my story in another discussion here - https://connect.mayoclinic.org/comment/310341/. Since you mentioned you are considering a spinal cord stimulator I thought you might want to see these related discussions.
– Comparison of Spinal Cord Stimulators from Boston Sci., Nevro: https://connect.mayoclinic.org/discussion/comparison-of-spinal-cord-stimulators-from-boston-sci-nevro/
– Update on my DRG stimulator Implant. Implanted 12 days ago. https://connect.mayoclinic.org/discussion/update-on-my-drg-stimulator-implant-implanted-12-days-ago/
– SPR Peripheral Nerve Stimulator (SPRINT) https://connect.mayoclinic.org/discussion/spr-peripheral-nerve-stimulator-sprint/
@user_ch98d0b5c . Good evening Ann. “Trauma” is the cause of my SFN (small fiber neuropathy). The trauma has been the result of numerous accidents, injuries, and surgeries. I use only medical cannabis for pain and discomfort. My mornings begin with a 1:1 CBD/THC tincture and my evenings end with a 2:1 CBD/THC tincture at bedtime. I have been using some form of medical cannabis for about 10 years. Adjustments have been made as my SFN has progressed or the barometric pressure inches its way down below 30.00.
I also use daily mindfulness and meditation. Then there must always be stretch yoga along with stability and balance exercises as prescribed by my physical therapist at Mayo Clinic. Twice a week I go for a Myofascial Release therapy session to relieve the restriction in the fascia tissue around my body.
I do take duloxetine for anxiety and depression plus 600 mg of gabapentin at bedtime for the tingle-tangles in my hands. I am trying a new anxiety medication in addition to the duloxetine, Bisphosorine, and it is working well to keep me from getting into the sequence of anxiety which produces pain, and then pain produces more anxiety. I abhor getting into that merry-go-round of symptoms because it is difficult to catch up with some form of relief.
Is this what you wanted to know? You must remember that with a progressive condition like neuropathy, you need to frequently make adjustments to the treatment program you have chosen.
What are you in need of right now?
May you be safe, protected, and free of inner and outer harm.
Chris
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1 ReactionInteresting! Pat
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