@ hosta, Your symptoms sound so much like mine! only it is my right leg that is involved, now beginning in my left. Bad back, had shingles on the right thigh 1 1/2 yr ago, seem to have restless leg on that side which keeps me from ever having a good night's sleep. Balance problems also, so have had some falls which have also landed on that right side. My dr. has prescribed Tramadol and Gabapentin which are supposed to help with the pain, and Requip which is supposed to help with the RLS. The last few nights I have taken more of the drugs, and realize that they create more balance problems. What to do???
@barbarn Ya gotta remember there are thousands of diseases and disorders and accidents that can and do use and control neuropathy. Each one has its own timeline and pattern. In fact, there are almost 2000 known Amyloidosis forms, and each one is different. Even different forms of diabetes 2 have different patterns. And Tramadol and Gabapentin do NOT work for all of them. I have tried many drugs for mine, and none have worked any better for me than generic super strength Tylenol. Well, and some comfort food occasionally.
Hello Eve @hosta, I wasn't familiar with shingles associated with neuropathy so went searching and found an interesting paper that associates shingles and neuropathy and closes saying "focusing on nervous system complications (including peripheral polyneuropathy) as well as pain are essential."
Eve, I read one of your earlier posts mentioning you were trying to get a pain pump to help with your pain but the doctor said you were not a candidate. Did the doctor tell you why you were not a candidate?
John, Thank you for the article, very interesting. Yes I thought I would get the pain pump. All that was told to me was no Other than the pain in my back and I have "Mild COPD" It seems it is my age. I am 82. My heart is good and other than the pain, I am in good health. I get so tired of the dr. saying "AT YOUR AGE"! I ask them, "Just because I am 82 does that mean I have to be in pain?" They just look at me! I am not one who sits in a chair all day feeling sorry for myself. I take care of myself, I can and freeze from the garden, I quilt, crochet, I am involved in my church. I don't want to give up. I can't stand long, lift, or reach high with my left arm. I feel that if I was younger, something would be done. I also fee that after you reach a certain age doctors don't want to waste time on you! Maybe I sound bitter and I don't mean to. I have a strong faith in God and I know he will get me thru this.
@ hosta, Your symptoms sound so much like mine! only it is my right leg that is involved, now beginning in my left. Bad back, had shingles on the right thigh 1 1/2 yr ago, seem to have restless leg on that side which keeps me from ever having a good night's sleep. Balance problems also, so have had some falls which have also landed on that right side. My dr. has prescribed Tramadol and Gabapentin which are supposed to help with the pain, and Requip which is supposed to help with the RLS. The last few nights I have taken more of the drugs, and realize that they create more balance problems. What to do???
John, Thank you for the article, very interesting. Yes I thought I would get the pain pump. All that was told to me was no Other than the pain in my back and I have "Mild COPD" It seems it is my age. I am 82. My heart is good and other than the pain, I am in good health. I get so tired of the dr. saying "AT YOUR AGE"! I ask them, "Just because I am 82 does that mean I have to be in pain?" They just look at me! I am not one who sits in a chair all day feeling sorry for myself. I take care of myself, I can and freeze from the garden, I quilt, crochet, I am involved in my church. I don't want to give up. I can't stand long, lift, or reach high with my left arm. I feel that if I was younger, something would be done. I also fee that after you reach a certain age doctors don't want to waste time on you! Maybe I sound bitter and I don't mean to. I have a strong faith in God and I know he will get me thru this.
@hosta I have been looking at the world through your glasses for some time now. A while back I decided to do something different. I started writing up all the crap I was going through, including false dXs and everything. Now I have about 140 computer pages of notes and dX and responses. You can look at it or download it at https://bit.Ly/1w7j4j8 under "Amyloidosis". Free. It has really helped me think through this mess. I suggest it for anyone.
yes i have pn Im taking gapapetin 1.5 at dinner and 1.5 at bed time 900 each time, Im okay during the day put after a few hours in bed I have pain around my shins, at time it feels like its cold it keeps me awake I play on the computer untill I can't stay awake, does laser therapy work has anyone used it?
Hello @paulfj067 — Welcome to Connect. I'm glad you found us. I have idiopathic small fiber PN but only have numbness with mine in the feet to just above the ankles. I've been dealing with PN for 20+ years. If you have any questions about how to do something on Connect, there is a great Get Started on Connect guide link at the bottom of each page on Connect in the left column.
@paulfj067 can you share a little more about your peripheral neuropathy and if you have found any treatments that work for you?
Hi John, I have found that Doctors just want to throw drugs to deal with PN. In my opinion the side affects are worse that the issue. I have tried Lyrica only to feel like I have been run over by a truck. The way I manage is with a wheat bag that I constantly heat up in the microwave. This method helps a little, that is all. I would love to know a direction to go in. I am really over it that’s for sure.
Hi John, I have found that Doctors just want to throw drugs to deal with PN. In my opinion the side affects are worse that the issue. I have tried Lyrica only to feel like I have been run over by a truck. The way I manage is with a wheat bag that I constantly heat up in the microwave. This method helps a little, that is all. I would love to know a direction to go in. I am really over it that’s for sure.
Hi Paul @paulfj067 , I agree with you but it's just my opinion and I have no medical background or training. Also, I only have numbness with my PN. I found something that works for me and has worked for others who also have pain with their PN. I don't know if it will work for you but it's an alternative to drugs. I decided to try it after a lot of research on my own and also the fact there are no drugs or topicals that work to get rid of numbness, I've tried them all. Drugs do nothing to fix or repair damaged nerves which is the cause of the pain and numbness. The drugs just block or mask the pain in your brain so you don't feel it and they come with some major side effects. You can read my story here if you want to give it a try:
Hi Paul @paulfj067 , I agree with you but it's just my opinion and I have no medical background or training. Also, I only have numbness with my PN. I found something that works for me and has worked for others who also have pain with their PN. I don't know if it will work for you but it's an alternative to drugs. I decided to try it after a lot of research on my own and also the fact there are no drugs or topicals that work to get rid of numbness, I've tried them all. Drugs do nothing to fix or repair damaged nerves which is the cause of the pain and numbness. The drugs just block or mask the pain in your brain so you don't feel it and they come with some major side effects. You can read my story here if you want to give it a try:
Hi Paul @paulfj067 — hope it works for you also. Just make sure you read through all of the new member info for the closed Facebook group. It will help you understand what each part of the protocol of supplements is doing and help you understand it a little better. If you search the Facebook group using the phrase "#theprotocolworks" you will find all of the member success stories.
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@barbarn Ya gotta remember there are thousands of diseases and disorders and accidents that can and do use and control neuropathy. Each one has its own timeline and pattern. In fact, there are almost 2000 known Amyloidosis forms, and each one is different. Even different forms of diabetes 2 have different patterns. And Tramadol and Gabapentin do NOT work for all of them. I have tried many drugs for mine, and none have worked any better for me than generic super strength Tylenol. Well, and some comfort food occasionally.
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Helpful -
Hug
4 ReactionsJohn, Thank you for the article, very interesting. Yes I thought I would get the pain pump. All that was told to me was no Other than the pain in my back and I have "Mild COPD" It seems it is my age. I am 82. My heart is good and other than the pain, I am in good health. I get so tired of the dr. saying "AT YOUR AGE"! I ask them, "Just because I am 82 does that mean I have to be in pain?" They just look at me! I am not one who sits in a chair all day feeling sorry for myself. I take care of myself, I can and freeze from the garden, I quilt, crochet, I am involved in my church. I don't want to give up. I can't stand long, lift, or reach high with my left arm. I feel that if I was younger, something would be done. I also fee that after you reach a certain age doctors don't want to waste time on you! Maybe I sound bitter and I don't mean to. I have a strong faith in God and I know he will get me thru this.
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2 Reactionsbarbarn. I pray that you find some relief from your pain. I to have restless leg syndrome and it is under control now!
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2 Reactions@hosta I have been looking at the world through your glasses for some time now. A while back I decided to do something different. I started writing up all the crap I was going through, including false dXs and everything. Now I have about 140 computer pages of notes and dX and responses. You can look at it or download it at https://bit.Ly/1w7j4j8 under "Amyloidosis". Free. It has really helped me think through this mess. I suggest it for anyone.
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Like -
Helpful -
Hug
1 Reactionyes i have pn Im taking gapapetin 1.5 at dinner and 1.5 at bed time 900 each time, Im okay during the day put after a few hours in bed I have pain around my shins, at time it feels like its cold it keeps me awake I play on the computer untill I can't stay awake, does laser therapy work has anyone used it?
Hi John, I have found that Doctors just want to throw drugs to deal with PN. In my opinion the side affects are worse that the issue. I have tried Lyrica only to feel like I have been run over by a truck. The way I manage is with a wheat bag that I constantly heat up in the microwave. This method helps a little, that is all. I would love to know a direction to go in. I am really over it that’s for sure.
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Like -
Helpful -
Hug
1 ReactionHi Paul @paulfj067 , I agree with you but it's just my opinion and I have no medical background or training. Also, I only have numbness with my PN. I found something that works for me and has worked for others who also have pain with their PN. I don't know if it will work for you but it's an alternative to drugs. I decided to try it after a lot of research on my own and also the fact there are no drugs or topicals that work to get rid of numbness, I've tried them all. Drugs do nothing to fix or repair damaged nerves which is the cause of the pain and numbness. The drugs just block or mask the pain in your brain so you don't feel it and they come with some major side effects. You can read my story here if you want to give it a try:
— https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985
John
@hosta – what did you do to control the restless leg? Something specific? or perhaps a by-product of other drugs you take?
Hi John, I am willing to give anything a try within reason. Thankyou so much for your prompt reply.
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1 ReactionHi Paul @paulfj067 — hope it works for you also. Just make sure you read through all of the new member info for the closed Facebook group. It will help you understand what each part of the protocol of supplements is doing and help you understand it a little better. If you search the Facebook group using the phrase "#theprotocolworks" you will find all of the member success stories.
Good luck!
John