No, we are wondering if it’s the opposite - the Tegretol was controlling neuropathy symptoms. Mine neuropathy is probably genetic, as my sister has the same. I think I started having symptoms within the last 10 years. I came off Tegretol about 8 years ago, and the symptoms really blew up after that.
My situation is kind of odd and unique though.
@user* I've been thinking about no one being able to think of a dr who has been helpful to them - and - there must be so many kinds of PN, so many causes, there must be equally as many treatments, and to find the one that works for a particular individual might be like looking for the proverbial needle in haystack? or, perhaps as many have said - there is no treatment!!! You do have to be your own advocate - keep looking, trying new things, sharing what you have learned and what others have learned.
I think the majority of us with idiopathic PN are in the same boat. The pain may be different, the solutions vary, but trial and error seem to be what's on the Billboard. I must wear certain kinds of socks (all the time), rub CBD/THC cream on my feet morning and night. The pain has involved my hands just recently, so I will be forced to use cream on my hands as well. Looks like more "plastic gloves at home during the day....(since I wash my hands so, so often during the day.) What else can I do? Every idea is welcome. Thank you John B for all your valuable information!
I think the majority of us with idiopathic PN are in the same boat. The pain may be different, the solutions vary, but trial and error seem to be what's on the Billboard. I must wear certain kinds of socks (all the time), rub CBD/THC cream on my feet morning and night. The pain has involved my hands just recently, so I will be forced to use cream on my hands as well. Looks like more "plastic gloves at home during the day....(since I wash my hands so, so often during the day.) What else can I do? Every idea is welcome. Thank you John B for all your valuable information!
Beware of very bad side effects with Lyrica!
I'm using R alpha lipoic acid, and PEA and b complex and magnesium, sun for d
And will experiment with med. Marijuana, won't touch Lyrica for my sfn of about six years. Walking helps too, or any gentle exercise.
The cream that I get ( in PA) is 50-50 CBD to THC at a Dispensary. I have tried with and without
using it overnight and it is noticeably different if I do not use it. All these products are pricey, so I experiment now and then. The last cream was from my foot Doctor ( his own private pay stash) and it was yellow. It stained all my socks. But this new cream is white. I do use it morning and night. (I did not use "rubber" gloves then) ... LOL live and learn.! Best of luck!
Beware of very bad side effects with Lyrica!
I'm using R alpha lipoic acid, and PEA and b complex and magnesium, sun for d
And will experiment with med. Marijuana, won't touch Lyrica for my sfn of about six years. Walking helps too, or any gentle exercise.
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@bcool123
Here is a link regarding supplements.
https://connect.mayoclinic.org/discussion/supplement-recommendations-can-help/?pg=4#comment-624993
Jake
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1 ReactionNo, we are wondering if it’s the opposite - the Tegretol was controlling neuropathy symptoms. Mine neuropathy is probably genetic, as my sister has the same. I think I started having symptoms within the last 10 years. I came off Tegretol about 8 years ago, and the symptoms really blew up after that.
My situation is kind of odd and unique though.
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3 ReactionsVery helpful!🙏😇
Jakeduck, Thank you for the information
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1 ReactionI think the majority of us with idiopathic PN are in the same boat. The pain may be different, the solutions vary, but trial and error seem to be what's on the Billboard. I must wear certain kinds of socks (all the time), rub CBD/THC cream on my feet morning and night. The pain has involved my hands just recently, so I will be forced to use cream on my hands as well. Looks like more "plastic gloves at home during the day....(since I wash my hands so, so often during the day.) What else can I do? Every idea is welcome. Thank you John B for all your valuable information!
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5 ReactionsWhat percentage of THC/CBD cream do you use?
Mrw70
Idiopathic small fiber neuropathy for 5 years- 300 mg of Lyrica daily- biggest issue is numbness in both feet
Beware of very bad side effects with Lyrica!
I'm using R alpha lipoic acid, and PEA and b complex and magnesium, sun for d
And will experiment with med. Marijuana, won't touch Lyrica for my sfn of about six years. Walking helps too, or any gentle exercise.
-
Like -
Helpful -
Hug
1 ReactionThe cream that I get ( in PA) is 50-50 CBD to THC at a Dispensary. I have tried with and without
using it overnight and it is noticeably different if I do not use it. All these products are pricey, so I experiment now and then. The last cream was from my foot Doctor ( his own private pay stash) and it was yellow. It stained all my socks. But this new cream is white. I do use it morning and night. (I did not use "rubber" gloves then) ... LOL live and learn.! Best of luck!
Thanks for information. The Lyrica dulls the numbness but that is about all. Tried Gabapentin with no luck.