thanks for the reply. I've had it in my feet for 30 years. Was controlled with different meds but starting last year they don't work anymore or create havoc(Lyrica, Cymbalta). New pain doc suggested 5% lidocaine cream: useless. Recently started CBD tincture which is expensive. Helps somewhat. Still too painful to walk, but at least it seems to prevent the burning pain. There is no accepted dosage. One article I read "2mg was effective for one person, but another was taking 2,000!! As an example of how primitive this field is, the author didn't even say if the 2,000 was effective. Plus I pay $50 for 1000mg, which means that person was spending $100/day. I don't believe that. Can't tell you how many cc's I'm taking, because Have not figured out how many cc's in a dropper. but I'm working one this. Will post this, hopefully, within a within 1-2 weeks when I have used the whole bottle
It sure is! Most people don’t know that there more than 100 types of peripheral neuropathy per the NIH. Each have their own set of symptoms and prognosis. I knew someone at the Mayo Clinic who had PN of the skin. Another local person feels like there’s an extremely tight belt around her waist. Someone else felt like there was constantly water running down his legs. There is neuropathy of the eyes, elbows, under arms, all parts of the body including internal organs (heart, blood vessels, bladder…which I have, and intestines. The peripheral nerves in the seath or the axon within the nerves are damaged and send “false messages” to the central nervous system (brain and spinal cord). For example, if you gently rub your foot, arm, etc., your nerves should communicate to your brain that it feels soft/smooth. Instead, your brain hears, “Ouch! Ants are biting me! They’re on fire! I just stepped on glass or an electric wire! Yes, it is indeed a very weird disease.
Peggy,I really can relate to your post,leave almost my entire body involved in some form of poly neuropathy. It is driving me oof the wall! Doc has tried different meds, can’t seem to control all my symptoms. I am really disheartened because my intestines,liver,and digestive problems have now become serious. Well just thought I would try and communicate with you. Thanks
Peggy,I really can relate to your post,leave almost my entire body involved in some form of poly neuropathy. It is driving me oof the wall! Doc has tried different meds, can’t seem to control all my symptoms. I am really disheartened because my intestines,liver,and digestive problems have now become serious. Well just thought I would try and communicate with you. Thanks
Hi, Larry. I’m so sorry about your suffering. It does drive you crazy, doesn’t it? I was on an intrathecal pain pump for 10 years with morphine, then snail venom and last was dilaudid. Before that I used the fentanyl patch, hydrocodone, tramadol, you name it. For me personally, I found that narcotics didn’t help. They just zombied me out. My pain management doctor was also trying to treat the pain in my spine from degenerative disc disease. Eventually, nothing worked for either as far as narcotics go, so I don’t take anything for pain. It tore up my stomach from decades of meds so unless I went back to the pain pump, I can’t tolerate oral narcotics after one or two doses. They cause severe stomach pain and vomiting. That creates an extra problem when I have surgeries.
I know a lot of people can’t tolerate Lyrica or gabapentin (Neurontin), but as an anti-seizure drug with an off-label use of helping nerve pain, it is the only thing that reduces the degree of burning. My feet still tingle all the time and I get intermittent sharp jolts like an electric shock. Have you tried higher doses of gabapentin? Although I don’t recommend it, at least not for a woman my size, the maximum dose of 3200 mg per day helped but was too much for me. It made me fall asleep in my food and I was afraid of drowning in my cereal or soup! LOL. Seriously though, it prevented me from driving for 10 years and I couldn’t carry on a conversation without nodding off, so I had them reduce the dose again and again until I am fully alert and can function well. I take 300 mg 2 to 3 times a day. I’m sure since you’ve had it so many years, you’ve tried everything. I am so sorry and will pray for you Larry.
Connect
Connect
Like
Helpful
Hug
thanks for the reply. I've had it in my feet for 30 years. Was controlled with different meds but starting last year they don't work anymore or create havoc(Lyrica, Cymbalta). New pain doc suggested 5% lidocaine cream: useless. Recently started CBD tincture which is expensive. Helps somewhat. Still too painful to walk, but at least it seems to prevent the burning pain. There is no accepted dosage. One article I read "2mg was effective for one person, but another was taking 2,000!! As an example of how primitive this field is, the author didn't even say if the 2,000 was effective. Plus I pay $50 for 1000mg, which means that person was spending $100/day. I don't believe that. Can't tell you how many cc's I'm taking, because Have not figured out how many cc's in a dropper. but I'm working one this. Will post this, hopefully, within a within 1-2 weeks when I have used the whole bottle
Been using the products for a while now,effective for moderate pain and burning but nothing significant after that and yes it’s expensive!
-
Like -
Helpful -
Hug
1 ReactionPeggy,I really can relate to your post,leave almost my entire body involved in some form of poly neuropathy. It is driving me oof the wall! Doc has tried different meds, can’t seem to control all my symptoms. I am really disheartened because my intestines,liver,and digestive problems have now become serious. Well just thought I would try and communicate with you. Thanks
-
Like -
Helpful -
Hug
2 ReactionsHi, Larry. I’m so sorry about your suffering. It does drive you crazy, doesn’t it? I was on an intrathecal pain pump for 10 years with morphine, then snail venom and last was dilaudid. Before that I used the fentanyl patch, hydrocodone, tramadol, you name it. For me personally, I found that narcotics didn’t help. They just zombied me out. My pain management doctor was also trying to treat the pain in my spine from degenerative disc disease. Eventually, nothing worked for either as far as narcotics go, so I don’t take anything for pain. It tore up my stomach from decades of meds so unless I went back to the pain pump, I can’t tolerate oral narcotics after one or two doses. They cause severe stomach pain and vomiting. That creates an extra problem when I have surgeries.
I know a lot of people can’t tolerate Lyrica or gabapentin (Neurontin), but as an anti-seizure drug with an off-label use of helping nerve pain, it is the only thing that reduces the degree of burning. My feet still tingle all the time and I get intermittent sharp jolts like an electric shock. Have you tried higher doses of gabapentin? Although I don’t recommend it, at least not for a woman my size, the maximum dose of 3200 mg per day helped but was too much for me. It made me fall asleep in my food and I was afraid of drowning in my cereal or soup! LOL. Seriously though, it prevented me from driving for 10 years and I couldn’t carry on a conversation without nodding off, so I had them reduce the dose again and again until I am fully alert and can function well. I take 300 mg 2 to 3 times a day. I’m sure since you’ve had it so many years, you’ve tried everything. I am so sorry and will pray for you Larry.
Peggy