I’ve been dealing with it 7yrs now. It’s in both legs, feet,and hands. I’m in a wheelchair. I’ve had nerve ablation, spinal stimulator, 2 Fusions. I’m left with pain, burning, and numbness. I’ve tried Gabapentin, Lyrica, Elavil. My Doctor limited me to 3 Tylenol 4 a day. I’ve tried all the over counter creams,and every pill they say helps. I take a strong vitamin plus magnesium and a combo of B vitamins. Any help out there?
Try ALA (alpha lipoic acid). I take 600mg a day. It doesn't get rid of the symptoms, but it decreases the intensity. I have had PN for 9 years now. I refused to take any seizure medicine, like gabapentin. I believe they kill the pain by kiliing your nerves. I want to heal my nerves. I take vitamins, and exercise my toes 100 wiggle per day. Also, hot showers keep the pain down. It keeps the blood flowing! I keep my feet warm at all times.
I work 40 hours a week as a medical transporter. Sometimes I transport with a wheelchair van, pushing wheelchairs up a ramp. I am able to walk unhindered. The symptoms never completely go away, but are manageable so that I'm not constantly aware of them.
I’ve been reading these submissions for awhile now and what I remember most is “PN is progressive. Symptomatic relief is spotty at best. It won’t kill you except indirectly through falls from the inability of those micro movements in your feet and calves that would keep your gait smooth and stable. The rest is just conversation.”
Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.
How long have you been dealing with peripheral neuropathy?
My daughter is 35. She had a hysterectomy and bladder lift. Her bladder dropped. Her hands and feet went numb and started experiencing pain. She was diagnosed with sfn(small fiber neuropathy. My question has anyone had compressed nerves or entrapment? How do you get relief?
Yes I am, it’s not pleasant. Fortunately, I don’t have the pain connected with a lot of people who suffer from peripheral neuropathy but I do suffer greatly from the weakness which seems to be increasing with time. I’m looking at exercise as a means to help I go to Aqua fitness five days a week and I’m going to increase it with weight-bearing walking Because although the Aqua is good, you’re not putting any stress on your muscles. Motivation seems to be my greatest enemy at the moment but won’t give up the good fight. I hope anything in there helped good luck,
My daughter is 35. She had a hysterectomy and bladder lift. Her bladder dropped. Her hands and feet went numb and started experiencing pain. She was diagnosed with sfn(small fiber neuropathy. My question has anyone had compressed nerves or entrapment? How do you get relief?
Welcome @4sherri1961, I'm sorry to hear that your daughter has been diagnosed with small fiber neuropathy and having to deal with the pain. There are quite a few members who have mentioned compressed or nerve entrapment in other discussions. It might be helpful to scan through their comments to learn what they have shared. Here's a search link that lists the comments - https://connect.mayoclinic.org/search/comments/?search=compressed%20or%20nerve%20entrapment.
I don't think your daughter is alone with her symptoms and she might want to connect with other members who have had similar post surgery experiences:
-- Having problems post Bladder Prolapse Surgery: What helps? https://connect.mayoclinic.org/discussion/surgery-failure/
Has her surgeon or care team offered any treatment suggestions that might provide some relief?
Welcome @4sherri1961, I'm sorry to hear that your daughter has been diagnosed with small fiber neuropathy and having to deal with the pain. There are quite a few members who have mentioned compressed or nerve entrapment in other discussions. It might be helpful to scan through their comments to learn what they have shared. Here's a search link that lists the comments - https://connect.mayoclinic.org/search/comments/?search=compressed%20or%20nerve%20entrapment.
I don't think your daughter is alone with her symptoms and she might want to connect with other members who have had similar post surgery experiences:
-- Having problems post Bladder Prolapse Surgery: What helps? https://connect.mayoclinic.org/discussion/surgery-failure/
Has her surgeon or care team offered any treatment suggestions that might provide some relief?
Her surgeon was in denial when we had mentioned that her feet and hands had gone numb after her bladder had dropped which is frustrating because he offered no solutions. So we have been on this journey alone which is very frustrating.
Yes I am, it’s not pleasant. Fortunately, I don’t have the pain connected with a lot of people who suffer from peripheral neuropathy but I do suffer greatly from the weakness which seems to be increasing with time. I’m looking at exercise as a means to help I go to Aqua fitness five days a week and I’m going to increase it with weight-bearing walking Because although the Aqua is good, you’re not putting any stress on your muscles. Motivation seems to be my greatest enemy at the moment but won’t give up the good fight. I hope anything in there helped good luck,
Magrose45
I was diagnosed 7 years ago with PN, non diabetic, no pain, just walking problems & balance. Fatigue & probably inflammation the biggest problems. I also have drop foot which causes me to wear AFO’s , I don’t go anywhere without them. I walk in the pool 3 times a week for exercise but hasn’t improved my situation, probably has kept me from getting worse. Anyone out there with similar situation, please reply . Is there anything out there to help your nerves to regenerate?
I also have non diabetic PN, no pain, walking and balance problems and drop foot (I also must wear an AFO). For the weakness in my thighs, I do various physical therapy exercises to try to strengthen them, or at least keep the weakness from getting worse. For balance, I stand in a corner next to the walls and a high chest of drawers, with my feet together and my eyes closed. I'm up to 1 minute 15 seconds most days, but often it takes 2 or 3 attempts. Because of where I stand, I can't fall down, just onto a wall or the chest. My therapist said that is training my brain to use new pathways to send signals to my legs. My balance doesn't seem to be getting any better, but if I didn't do these exercises, it might be much worse.
I was just diagnosed with PN. For me, it also came out of the blue. I am an athlete and back in February started experiencing excruciating pain in my left left from the back of the knee, down the outside of the leg into the ankle and foot. At it's worst I was barely able to lift my leg due to some loss of mobility. There were days the pain was so bad, I would be in tears on the way home from the gym. No matter what direction I tried to rest my leg, I was in pain.
Over time, it has gotten better. I've been working with Innovative Movement & Sports Medicine for many years so she knows me and my physical ability well. Since this started, she has done cupping, scraping, dry needling, stretching, rolling on lacrosse balls, etc. I also use a topical rub with CBD in it.
My pain and mobility has improved since February, however it's not gone. I finally had an EMG done last week and got the diagnosis of PN after seeing MULTIPLE doctors, none of whom seemed to care enough to even schedule follow-ups. I think that has been the worst of my experience.
I am not diabetic and also drink alcohol very rarely, so am able to rule those causes out. I am hoping to get to the underlying cause and then work from there so I can get back to doing the hard core workouts I've always loved.
I am following threads here to see what others are experiencing and trying to work through/live with PN.
I'm not getting better with exercise so keeping house is enough for me. and that's getting to be too much at age 93. My PN is similar to yours including our former lifestyle so I'm glad to know you are improving with exercise, but slower exercise repetition is easier on older folks to avoid extra pain. (I read this somewhere.)
I find no reason for more pain in my right leg except aging. After all, we are just Pilgrams on this old earth, and the best is yet to come. Vyolet
I developed excruciating pain within a month of completing chemotherapy in 2005. I couldn’t return to work as an RN and was awarded disability. The diagnosis was fibromyalgia, chronic myofascial pain and chronic fatigue. Fibromyalgia was a trashcan diagnosis back in 2005. I think I should be in the Guinness world book of records for the first person to be awarded disability with fibromyalgia!!!
Years later, I was diagnosed with chemotherapy induced peripheral neuropathy. The pain continued, and other symptoms have progressed. Before the diagnosis of CIPN, I found pain management. That has helped me tremendously. I wouldn’t recommend it for everyone. Unfortunately, I didn’t tolerate gabapentine and Lyrica. But those do work for a lot of people.
I hope you will find some relief. I have found it to be very frustrating. But I try to take it one day at a time. Best of luck to you!
Try ALA (alpha lipoic acid). I take 600mg a day. It doesn't get rid of the symptoms, but it decreases the intensity. I have had PN for 9 years now. I refused to take any seizure medicine, like gabapentin. I believe they kill the pain by kiliing your nerves. I want to heal my nerves. I take vitamins, and exercise my toes 100 wiggle per day. Also, hot showers keep the pain down. It keeps the blood flowing! I keep my feet warm at all times.
I work 40 hours a week as a medical transporter. Sometimes I transport with a wheelchair van, pushing wheelchairs up a ramp. I am able to walk unhindered. The symptoms never completely go away, but are manageable so that I'm not constantly aware of them.
I’ve been reading these submissions for awhile now and what I remember most is “PN is progressive. Symptomatic relief is spotty at best. It won’t kill you except indirectly through falls from the inability of those micro movements in your feet and calves that would keep your gait smooth and stable. The rest is just conversation.”
My daughter is 35. She had a hysterectomy and bladder lift. Her bladder dropped. Her hands and feet went numb and started experiencing pain. She was diagnosed with sfn(small fiber neuropathy. My question has anyone had compressed nerves or entrapment? How do you get relief?
Yes I am, it’s not pleasant. Fortunately, I don’t have the pain connected with a lot of people who suffer from peripheral neuropathy but I do suffer greatly from the weakness which seems to be increasing with time. I’m looking at exercise as a means to help I go to Aqua fitness five days a week and I’m going to increase it with weight-bearing walking Because although the Aqua is good, you’re not putting any stress on your muscles. Motivation seems to be my greatest enemy at the moment but won’t give up the good fight. I hope anything in there helped good luck,
Welcome @4sherri1961, I'm sorry to hear that your daughter has been diagnosed with small fiber neuropathy and having to deal with the pain. There are quite a few members who have mentioned compressed or nerve entrapment in other discussions. It might be helpful to scan through their comments to learn what they have shared. Here's a search link that lists the comments - https://connect.mayoclinic.org/search/comments/?search=compressed%20or%20nerve%20entrapment.
I don't think your daughter is alone with her symptoms and she might want to connect with other members who have had similar post surgery experiences:
-- Having problems post Bladder Prolapse Surgery: What helps?
https://connect.mayoclinic.org/discussion/surgery-failure/
Has her surgeon or care team offered any treatment suggestions that might provide some relief?
Her surgeon was in denial when we had mentioned that her feet and hands had gone numb after her bladder had dropped which is frustrating because he offered no solutions. So we have been on this journey alone which is very frustrating.
Magrose45
I was diagnosed 7 years ago with PN, non diabetic, no pain, just walking problems & balance. Fatigue & probably inflammation the biggest problems. I also have drop foot which causes me to wear AFO’s , I don’t go anywhere without them. I walk in the pool 3 times a week for exercise but hasn’t improved my situation, probably has kept me from getting worse. Anyone out there with similar situation, please reply . Is there anything out there to help your nerves to regenerate?
I also have non diabetic PN, no pain, walking and balance problems and drop foot (I also must wear an AFO). For the weakness in my thighs, I do various physical therapy exercises to try to strengthen them, or at least keep the weakness from getting worse. For balance, I stand in a corner next to the walls and a high chest of drawers, with my feet together and my eyes closed. I'm up to 1 minute 15 seconds most days, but often it takes 2 or 3 attempts. Because of where I stand, I can't fall down, just onto a wall or the chest. My therapist said that is training my brain to use new pathways to send signals to my legs. My balance doesn't seem to be getting any better, but if I didn't do these exercises, it might be much worse.
I'm not getting better with exercise so keeping house is enough for me. and that's getting to be too much at age 93. My PN is similar to yours including our former lifestyle so I'm glad to know you are improving with exercise, but slower exercise repetition is easier on older folks to avoid extra pain. (I read this somewhere.)
I find no reason for more pain in my right leg except aging. After all, we are just Pilgrams on this old earth, and the best is yet to come. Vyolet
I developed excruciating pain within a month of completing chemotherapy in 2005. I couldn’t return to work as an RN and was awarded disability. The diagnosis was fibromyalgia, chronic myofascial pain and chronic fatigue. Fibromyalgia was a trashcan diagnosis back in 2005. I think I should be in the Guinness world book of records for the first person to be awarded disability with fibromyalgia!!!
Years later, I was diagnosed with chemotherapy induced peripheral neuropathy. The pain continued, and other symptoms have progressed. Before the diagnosis of CIPN, I found pain management. That has helped me tremendously. I wouldn’t recommend it for everyone. Unfortunately, I didn’t tolerate gabapentine and Lyrica. But those do work for a lot of people.
I hope you will find some relief. I have found it to be very frustrating. But I try to take it one day at a time. Best of luck to you!