Hi @dianeee, Welcome to Connect. I'm sorry to hear that you developed neuropathy after chemo treatments. There is a discussion that you may find helpful and you can meet other members who have also developed neuropathy after breast cancer treatment.
I posted a link to a Chemo-Induced Peripheral Neuropathy webinar by the Foundation for Peripheral in a post in the discussion here that you may find helpful - https://connect.mayoclinic.org/comment/246557/
Do you mind sharing what the most bothersome neuropathy symptom is for you? Have you found anything that helps?
I have PN from long COVID. EMG shows my nerve damage as minor and thankfully have no real pain just "buzzing" in my lower legs and feet along with "dead big toes". Have given up alcohol and caffeine which has helped. Also have done ARP Wave therapy for 2 months which I think helped - but it is a strong nerve stimulant (amplified TENS) so may not suit those in nerve pain. Taking nerve friendly supplements.
Today I got served a real coffee by accident and within 10 minutes by PN was going for it. High degree of aggravation. Lasted for about 6 hours. For me I think I have proof caffeine is inflammatory and therefore must be avoided.
Hi poodlemom6 & thanks for the post. I'm newly diagnosed with SFN, and after a whole lotta blood work-ups they've offered absolutely a whole Lotta nothin' as to why I developed this disease. I began experiencing burning about 7 months after an intense foot surgery to repair a torn posterior tibial tendon. Today, my foot is not healing, it's likely I'll need another surgery and I'm not sure what to do about the SFN. GABAPENTIN did nothing for me. I'm on Lyrica (pregabalin) and that's no better. I also take baclafen and oxycodone for pain during the day, and mirtazapine and ropinirole at night. Those 4 help with pain and chronic insomnia. My pain doc has referred me to participate in a one-week study by Abbott for a device that uses neurotransmitters to block pain. I'll try it, but from what I've read the jury's still out. Plus most have to continue taking some type of pain med.
johnmacc
I’ve had Neuropathy for 35 years.
I eat mountains of milk chocolate which contains less caffeine than dark. I read dark chocolate has 3 times more but don't know if that's accurately true.
I tried not eating anything without caffeine or sugar which was much worse than the Neuropathy and didn't notice any difference in pain. I believe that I have read messages from some where caffeine and/or sugar decreased their discomfort. Now I only have numbness, although irritating it's sure better than all the painful sensations.
My Neurologist said just because the test results may show mild damage the symptoms might be mid to severe.
Take care
Jake
Hi Chris,
I have had PN for over 30 years and now I have an issue with balancing. A year ago I was in PT for balancing but nothing seemed to work. I am interested in your balancing exercises. If I close my eyes while standing I would fall.
Thanks,
Chuck
Good evening @chuckc. Thanks for joining us on Connect. We strongly believe that by sharing our experiences, we can help others as well as ourselves. Let's see what we can do with balancing. My stability and balancing program is based on the Otago system. You may also find some of the stabilizing exercises on the Medbridge site. My PT is from Mayo and I was referred by my endocrinologist in hopes of developing a program that protects me from falling.
First of all.....I do not ever close my eyes. And for standing still poses, I can always rest at least one hand on the countertop or the stair railing. So.......this week will be my 4th time to "perform" and if ready, to have three or four new exercises added.
Right now......here is a description of some of them.
1. Standing with fingertips of one hand on counter and one foot slightly in front of the other, hold that position for 30-60 seconds for 3 sets.
2. Against an 8-10 foot counter walk along on your tip toes.....with fingers of the hand on the countertop. At the end turn around, change your fingers and tiptoe back for 5 or 6 sets. The goal is to gain enough stability to walk without your hand support.
3. Now turn around and walk backward the length of the counter......turn around and reverse the position to walk back.
4. Sit in a straight-back chair. Put your hands on your knees and come to standing without holding on to anything. Repeat 10 times for 2 sets or twenty "stands".
5. March in place, lifting your knee to your hip height. This one is hard for me.
6. Walk up and down stairs, with one foot after another, fighting for stability. Use the railing if needed.
7. Make a large figure eight in a room big enough to do so. This one improves your handling of curves. Do 8-10 figures. Take a breather and do another set.
8. Sit in a chair and lift your left leg until it is at full flexion. Then do the right leg. Again....try about 10-20 times in a couple of sets.
How is that for a beginning? I do these every other day preceded by stretchy Yoga poses.
Medbridge is the organization/company that produces a program for institutions like Mayo under their Fall Injury Prevention program.
Let me know if anything if you have additional questions. You can also take a look at Otago fall prevention exercises. The program is available through Mayo Clinic and may be a program that is used at other clinics and educational institutions.
Do any of these look helpful........just keep your eyes open.
May you be free, safe, and protected from inner and outer harm.
Chris
Hi @dp33
I have no "tingle tangles" after eating good dark chocolate. I really had issues one day with too much milk chocolate though, it was worth it! We know that sugar affects the neuropathy, so it could be the sugar-caffeine combination? To mean when together does the caffeine exasperate the sugar, as it also affects your body? I have extra fiber in my diet to help metabulize what sugar I consune slower. I am willing to experiment with food to see what causes issues and what does not, as my food allergies already cause enough grief. In the sring I was on an absolute
no sugar diet, doctor recommended, I could eat lettuce and chicken, my neuropathy was still there in the background. Because of those allergies, I make almost everything from scratch, is this healthy? Yes. Fun? No.
I have a similar condition, but attribute the "extreme fatigue" to Gabapentin, which I take every three hours to alleviate the nerve pain in my left lower leg.
Hi @dp33
I have no "tingle tangles" after eating good dark chocolate. I really had issues one day with too much milk chocolate though, it was worth it! We know that sugar affects the neuropathy, so it could be the sugar-caffeine combination? To mean when together does the caffeine exasperate the sugar, as it also affects your body? I have extra fiber in my diet to help metabulize what sugar I consune slower. I am willing to experiment with food to see what causes issues and what does not, as my food allergies already cause enough grief. In the sring I was on an absolute
no sugar diet, doctor recommended, I could eat lettuce and chicken, my neuropathy was still there in the background. Because of those allergies, I make almost everything from scratch, is this healthy? Yes. Fun? No.
Connect
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Neuropathy after chemo for br.cancer, any think would help please
Hi @dianeee, Welcome to Connect. I'm sorry to hear that you developed neuropathy after chemo treatments. There is a discussion that you may find helpful and you can meet other members who have also developed neuropathy after breast cancer treatment.
-- Chemo-induced Peripheral Neuropathy and Breast Cancer: https://connect.mayoclinic.org/discussion/neuropathy-11/
I posted a link to a Chemo-Induced Peripheral Neuropathy webinar by the Foundation for Peripheral in a post in the discussion here that you may find helpful - https://connect.mayoclinic.org/comment/246557/
Do you mind sharing what the most bothersome neuropathy symptom is for you? Have you found anything that helps?
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2 ReactionsHas anyone seen increase I pain or inflammation after eating dark chocolate which has some caffeine in it? John
How much Gabba we're you taking? John
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1 Reactionjohnmacc
I’ve had Neuropathy for 35 years.
I eat mountains of milk chocolate which contains less caffeine than dark. I read dark chocolate has 3 times more but don't know if that's accurately true.
I tried not eating anything without caffeine or sugar which was much worse than the Neuropathy and didn't notice any difference in pain. I believe that I have read messages from some where caffeine and/or sugar decreased their discomfort. Now I only have numbness, although irritating it's sure better than all the painful sensations.
My Neurologist said just because the test results may show mild damage the symptoms might be mid to severe.
Take care
Jake
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Like -
Helpful -
Hug
2 ReactionsGood evening @chuckc. Thanks for joining us on Connect. We strongly believe that by sharing our experiences, we can help others as well as ourselves. Let's see what we can do with balancing. My stability and balancing program is based on the Otago system. You may also find some of the stabilizing exercises on the Medbridge site. My PT is from Mayo and I was referred by my endocrinologist in hopes of developing a program that protects me from falling.
First of all.....I do not ever close my eyes. And for standing still poses, I can always rest at least one hand on the countertop or the stair railing. So.......this week will be my 4th time to "perform" and if ready, to have three or four new exercises added.
Right now......here is a description of some of them.
1. Standing with fingertips of one hand on counter and one foot slightly in front of the other, hold that position for 30-60 seconds for 3 sets.
2. Against an 8-10 foot counter walk along on your tip toes.....with fingers of the hand on the countertop. At the end turn around, change your fingers and tiptoe back for 5 or 6 sets. The goal is to gain enough stability to walk without your hand support.
3. Now turn around and walk backward the length of the counter......turn around and reverse the position to walk back.
4. Sit in a straight-back chair. Put your hands on your knees and come to standing without holding on to anything. Repeat 10 times for 2 sets or twenty "stands".
5. March in place, lifting your knee to your hip height. This one is hard for me.
6. Walk up and down stairs, with one foot after another, fighting for stability. Use the railing if needed.
7. Make a large figure eight in a room big enough to do so. This one improves your handling of curves. Do 8-10 figures. Take a breather and do another set.
8. Sit in a chair and lift your left leg until it is at full flexion. Then do the right leg. Again....try about 10-20 times in a couple of sets.
How is that for a beginning? I do these every other day preceded by stretchy Yoga poses.
Medbridge is the organization/company that produces a program for institutions like Mayo under their Fall Injury Prevention program.
Let me know if anything if you have additional questions. You can also take a look at Otago fall prevention exercises. The program is available through Mayo Clinic and may be a program that is used at other clinics and educational institutions.
Do any of these look helpful........just keep your eyes open.
May you be free, safe, and protected from inner and outer harm.
Chris
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Like -
Helpful -
Hug
1 ReactionHi @dp33
I have no "tingle tangles" after eating good dark chocolate. I really had issues one day with too much milk chocolate though, it was worth it! We know that sugar affects the neuropathy, so it could be the sugar-caffeine combination? To mean when together does the caffeine exasperate the sugar, as it also affects your body? I have extra fiber in my diet to help metabulize what sugar I consune slower. I am willing to experiment with food to see what causes issues and what does not, as my food allergies already cause enough grief. In the sring I was on an absolute
no sugar diet, doctor recommended, I could eat lettuce and chicken, my neuropathy was still there in the background. Because of those allergies, I make almost everything from scratch, is this healthy? Yes. Fun? No.
JFN
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2 ReactionsI have a similar condition, but attribute the "extreme fatigue" to Gabapentin, which I take every three hours to alleviate the nerve pain in my left lower leg.
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1 ReactionI did not know that sugar affects the neuropathy.
Thank you for the info.
Arthur Roberts
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3 ReactionsHi John,
Re: Gabapentin
I was taking 600mg/3x daily