Welcome @delia74, The bad news is that the site was having some normal growth spurts and going through some redesign. The good news is that it has not been taken down but the link to the patient tools did change. Thanks for letting me know.
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?
Hello @sherryp, I would like to add my welcome along with @paktoledo and others. Do you mind sharing more about your neuropathy and any questions you are trying to get answered?
If I knew then what I know now about chemo and the catastrophic nerve damage it can cause, I would'nt have walked away from it, I would've run. The cancer came back anyway. I'll never know if the chemo was worth it.
There is actually an official diagnosis now for chemo induced peripheral neuropathy. Is yours from chemo or something else? There are prescription meds that work for some & also have some unpleasant side effects for some. My husband takes Gabapentin and has no problem with it. I tried it, and it did help some, but I was constantly dizzy. It was a major problem if I got up in the middle of the night. It did not improve enough to put up with the side effect.
What kinds of issues are you dealing with? I understand it can be very different from one person to the next. Whatever, it is uncomfortable, can certainly cause us to be unsure on our feet and be very frustrating. I hope you find something that helps. I am 3 years out from taking Taxotere, which is what caused mine. It is better but still a pretty major issue. I have it in both feet and both hands.
Neuropatía periférica en teoría de origen desconocido. Pero la dieron como de origen desconocido parece que no hay mucho donde indagar. Mis antecedentes son haber usado tamosifeno ,que para algunos puede ser la causa.Pero recuerdo que mis primeros síntomas creo que fueron tremendos calambres antes de empezar con esa droga. Fui perdiendo la sensibilidad en los pies y además una espasticidad muy marcada. Esto empezó hace más de 10 años. Pero soy una privilegiada porque no tengo el más mínimo dolor.
Hello Rabbit. I have severe foot pain. The opiates I have been prescribed seem to not be as effective as they were at the beginning. In fact, they maybe help about 30% of the pain at this time. I am going to research medical marijuana next.
PN is a real Bear to have to fight. Mine from chemo (Lupron) which they are stopping the use of because better and less harmful drugs are being used. Also before the Chemo, and with first Prostate biopsy, I was given the Antibiotic CIPRO and that started the burning toes and folks should know that certain antibiotics directly cause PN. B-vitamins are helpful if you get the right kind. Took B-6 thinking it would help but then learned that the B-6 had to be in the P-5-P form and that helped. For fast relief from burning feet (and/or) hands I use BioFreeze gel and apply it topically with a little rubbing it in. The very best and most dependable relief to me is smoke the grass! An almost instant relief (in seconds) comes as blood vessels open up. Best weed is Indica as it tends to relax the body while Sativa hypes you up which is not the desired effect. Also getting the most Nitric Oxide in your body is most important. Inhale deep thru the nose and exhale thru the nose (try humming on the exhale). The N/O is is absorbed in the Palate and Nasal cavities. Not the Lungs. The humming greatly (by 10X+) increases the N/O you extract from the air. If done regularly, spinning on a stationary Bike will help. Your thighs hold a huge amount of blood and to spin fairly fast for a few minutes several times a week will also really help with the PN mainly in your feet.
PN is a real Bear to have to fight. Mine from chemo (Lupron) which they are stopping the use of because better and less harmful drugs are being used. Also before the Chemo, and with first Prostate biopsy, I was given the Antibiotic CIPRO and that started the burning toes and folks should know that certain antibiotics directly cause PN. B-vitamins are helpful if you get the right kind. Took B-6 thinking it would help but then learned that the B-6 had to be in the P-5-P form and that helped. For fast relief from burning feet (and/or) hands I use BioFreeze gel and apply it topically with a little rubbing it in. The very best and most dependable relief to me is smoke the grass! An almost instant relief (in seconds) comes as blood vessels open up. Best weed is Indica as it tends to relax the body while Sativa hypes you up which is not the desired effect. Also getting the most Nitric Oxide in your body is most important. Inhale deep thru the nose and exhale thru the nose (try humming on the exhale). The N/O is is absorbed in the Palate and Nasal cavities. Not the Lungs. The humming greatly (by 10X+) increases the N/O you extract from the air. If done regularly, spinning on a stationary Bike will help. Your thighs hold a huge amount of blood and to spin fairly fast for a few minutes several times a week will also really help with the PN mainly in your feet.
Thanks this was great information. I’m 79 and I use the recumbent stationary bike. It has the larger seat (comfortable), slightly reclined ( less strain on the back and less stress on hips and knees). I started counting time ( wanted to get to 30 minutes a day. Then I moved to at least 5 miles a day. Now I'm chasing 90 calerie's per ride. My blood pressure has been very good. LOL
If I knew then what I know now about chemo and the catastrophic nerve damage it can cause, I would'nt have walked away from it, I would've run. The cancer came back anyway. I'll never know if the chemo was worth it.
Based on two experiences I've had with problems that may have been neurological, I had the germ of an idea about treating neuropathy. My body seems to be telling me that the nerve damage I sustained is far beyond what it can repair - under normal conditions. From what I can gather from the posts on this forum, the general consensus seems to be that the treatment approaches currently available for neuropathy are of little benefit - the damage is too severe. So what to do. I now think that it is not enough to simply support the body's efforts at nerve repair. I now think that nerve repair and regeneration for extensive nerve damage must be forced. I am investigating using isometric exercises to force nerve repair. Most of the treatments I've tried have been about as effective as trying to drive a nail with a feather. I need a big hammer for this. I'll keep at it and report my progress.
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Thank you for replying so quickly! I just wanted site administrators to know that it was a site that led to nowhere....thanks for the new link!
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4 Reactions4-5 yeas
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3 ReactionsWelcome!I was just diagnosed with PN within the last month!
People on this board ate very caring.
Pat
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1 ReactionHello @sherryp, I would like to add my welcome along with @paktoledo and others. Do you mind sharing more about your neuropathy and any questions you are trying to get answered?
If I knew then what I know now about chemo and the catastrophic nerve damage it can cause, I would'nt have walked away from it, I would've run. The cancer came back anyway. I'll never know if the chemo was worth it.
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1 ReactionNeuropatía periférica en teoría de origen desconocido. Pero la dieron como de origen desconocido parece que no hay mucho donde indagar. Mis antecedentes son haber usado tamosifeno ,que para algunos puede ser la causa.Pero recuerdo que mis primeros síntomas creo que fueron tremendos calambres antes de empezar con esa droga. Fui perdiendo la sensibilidad en los pies y además una espasticidad muy marcada. Esto empezó hace más de 10 años. Pero soy una privilegiada porque no tengo el más mínimo dolor.
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4 ReactionsHave you found results with medical marijuana? What did you try? Do you need a doctor to write a prescription?
PN is a real Bear to have to fight. Mine from chemo (Lupron) which they are stopping the use of because better and less harmful drugs are being used. Also before the Chemo, and with first Prostate biopsy, I was given the Antibiotic CIPRO and that started the burning toes and folks should know that certain antibiotics directly cause PN. B-vitamins are helpful if you get the right kind. Took B-6 thinking it would help but then learned that the B-6 had to be in the P-5-P form and that helped. For fast relief from burning feet (and/or) hands I use BioFreeze gel and apply it topically with a little rubbing it in. The very best and most dependable relief to me is smoke the grass! An almost instant relief (in seconds) comes as blood vessels open up. Best weed is Indica as it tends to relax the body while Sativa hypes you up which is not the desired effect. Also getting the most Nitric Oxide in your body is most important. Inhale deep thru the nose and exhale thru the nose (try humming on the exhale). The N/O is is absorbed in the Palate and Nasal cavities. Not the Lungs. The humming greatly (by 10X+) increases the N/O you extract from the air. If done regularly, spinning on a stationary Bike will help. Your thighs hold a huge amount of blood and to spin fairly fast for a few minutes several times a week will also really help with the PN mainly in your feet.
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5 ReactionsThanks this was great information. I’m 79 and I use the recumbent stationary bike. It has the larger seat (comfortable), slightly reclined ( less strain on the back and less stress on hips and knees). I started counting time ( wanted to get to 30 minutes a day. Then I moved to at least 5 miles a day. Now I'm chasing 90 calerie's per ride. My blood pressure has been very good. LOL
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5 ReactionsBased on two experiences I've had with problems that may have been neurological, I had the germ of an idea about treating neuropathy. My body seems to be telling me that the nerve damage I sustained is far beyond what it can repair - under normal conditions. From what I can gather from the posts on this forum, the general consensus seems to be that the treatment approaches currently available for neuropathy are of little benefit - the damage is too severe. So what to do. I now think that it is not enough to simply support the body's efforts at nerve repair. I now think that nerve repair and regeneration for extensive nerve damage must be forced. I am investigating using isometric exercises to force nerve repair. Most of the treatments I've tried have been about as effective as trying to drive a nail with a feather. I need a big hammer for this. I'll keep at it and report my progress.
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Helpful -
Hug
2 Reactions