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barbarn
@barbarn

Posts: 119
Joined: Mar 25, 2018

Peripheral neuropathy, RLS and PLMD

Posted by @barbarn, Apr 26, 2018

My husband says "which came first, the chicken or the egg" – and I wonder, what did I have first? Neuropathy or RLS or PLMD? It almost seems they are totally connected. Even as a child, when I came home from school my grandmother would rub my legs because they hurt so badly. Back then, it was called "growing pains". Now I am 80, prediabetic, and my dr calls it "diabetic neuropathy". The worst of it seems to be only on one side, and last year while I was in the hospital I also got shingles on that same leg! Now, perhaps I can add post herpetic neuralgia to the list of symptoms. But worst is dealing with the RLS every. time. I. try. to. relax. in. the. evening! I take Gabapentin, Requip, Tramadol, Ibuprofen, Hyland's Restful Legs. Last night the RLS or PLMD started not until I went to bed, and finally after dealing with it for 3 hours I tried the little stem unit I got at Target. Voila!!! Sleep at last!!! It's a bit bulky to wear to bed, but HEY! I wasn't even aware of it again til I awoke this morning!!! Just one more thing for RLS sufferers to try?

REPLY

Hello @barbarn — That's good news that you were able to get relief from with the gizmo from Target. Was it a TENS unit of some kind? I see that Target has a couple of them – a Omron Electrotherapy TENS Pain Relief Device and an Aleve Direct Therapy Wireless TENS Device. You might want to share your success with finding it works in the Restless Leg Syndrome discussion here:

https://connect.mayoclinic.org/discussion/restless-leg-syndrome-2a74e5/?pg=1

Thanks for sharing.

John

sure John, I'll add this to the RLS discussion. But would like all PN sufferers to see it too, as it might help with their pain. Perhaps people would like to read the reviews of the Icy Hot tens therapy, and other tens units, that are on Amazon. For me, buying the tens unit was really "impulse buying" and after I brought it home it sat in the drawer for a long while – then one day, out of desperation, I used it and that's when I became a believer! Yesterday I went to the Amazon site and couldn't believe the number of tens units they have! The Icy Hot is easy to use – there are 2 different models, one for back and hip, one for knees. It uses CR2032 battereis, and I have ordered more refill pads as the adhesive does wear out after a number of uses. It comes with good instructions and if you put it close to your spine it just does seem to interfere with some pain signals (or also, in my case, the constant movement with RLS or PLMD).

@barbarn

sure John, I'll add this to the RLS discussion. But would like all PN sufferers to see it too, as it might help with their pain. Perhaps people would like to read the reviews of the Icy Hot tens therapy, and other tens units, that are on Amazon. For me, buying the tens unit was really "impulse buying" and after I brought it home it sat in the drawer for a long while – then one day, out of desperation, I used it and that's when I became a believer! Yesterday I went to the Amazon site and couldn't believe the number of tens units they have! The Icy Hot is easy to use – there are 2 different models, one for back and hip, one for knees. It uses CR2032 battereis, and I have ordered more refill pads as the adhesive does wear out after a number of uses. It comes with good instructions and if you put it close to your spine it just does seem to interfere with some pain signals (or also, in my case, the constant movement with RLS or PLMD).

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@barbarn — Thanks for the information. I'm sure there are some here that might want to give it a try. I had a Zopec DT1200 tens unit for neuropathy, came with two pads for the bottom of your feet. Used it for about 3 months but it didn't really do anything for me…but then I only have numbness and no pain so it may help others.

@barbarn

sure John, I'll add this to the RLS discussion. But would like all PN sufferers to see it too, as it might help with their pain. Perhaps people would like to read the reviews of the Icy Hot tens therapy, and other tens units, that are on Amazon. For me, buying the tens unit was really "impulse buying" and after I brought it home it sat in the drawer for a long while – then one day, out of desperation, I used it and that's when I became a believer! Yesterday I went to the Amazon site and couldn't believe the number of tens units they have! The Icy Hot is easy to use – there are 2 different models, one for back and hip, one for knees. It uses CR2032 battereis, and I have ordered more refill pads as the adhesive does wear out after a number of uses. It comes with good instructions and if you put it close to your spine it just does seem to interfere with some pain signals (or also, in my case, the constant movement with RLS or PLMD).

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does exercise help you at all?

@barbarn

sure John, I'll add this to the RLS discussion. But would like all PN sufferers to see it too, as it might help with their pain. Perhaps people would like to read the reviews of the Icy Hot tens therapy, and other tens units, that are on Amazon. For me, buying the tens unit was really "impulse buying" and after I brought it home it sat in the drawer for a long while – then one day, out of desperation, I used it and that's when I became a believer! Yesterday I went to the Amazon site and couldn't believe the number of tens units they have! The Icy Hot is easy to use – there are 2 different models, one for back and hip, one for knees. It uses CR2032 battereis, and I have ordered more refill pads as the adhesive does wear out after a number of uses. It comes with good instructions and if you put it close to your spine it just does seem to interfere with some pain signals (or also, in my case, the constant movement with RLS or PLMD).

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Exercise definitely helps with my PMR and lower back problems. I've been working on my leg muscles by riding a recumbent exercise bike for 30 minutes when I wake up. It kind of gets my blood flowing and helps with the morning stiffness. I can't walk very much or far due to my lower back issues so riding the exercise bike is the next best thing for me.

@barbarn

sure John, I'll add this to the RLS discussion. But would like all PN sufferers to see it too, as it might help with their pain. Perhaps people would like to read the reviews of the Icy Hot tens therapy, and other tens units, that are on Amazon. For me, buying the tens unit was really "impulse buying" and after I brought it home it sat in the drawer for a long while – then one day, out of desperation, I used it and that's when I became a believer! Yesterday I went to the Amazon site and couldn't believe the number of tens units they have! The Icy Hot is easy to use – there are 2 different models, one for back and hip, one for knees. It uses CR2032 battereis, and I have ordered more refill pads as the adhesive does wear out after a number of uses. It comes with good instructions and if you put it close to your spine it just does seem to interfere with some pain signals (or also, in my case, the constant movement with RLS or PLMD).

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Yep – I'm finding the exercise bike is a good way to get exercise.

@johnbishop and @barbarn

Yes, I'm finding a bike helpful as well. I've been using the NuStep (I think that is the right name). It looks like a recumbent exercise bike but the pedals and movable handle bars look like those on an Elliptical. I recently began having symptoms of neuropathy on the right inner leg. After having an EMG it turned out to be from a inflamed nerve at the root of a L5. The biking helps. I use it at my health club – it would be too expensive to buy for home use.

It works better for me than the traditional recumbent exercise bike – I don't get as winded from heart problems – not sure what difference it makes. Exercise bikes are also great for Parkinson's patients. There is a special program offered by YMCAs throughout the country called Pedaling for Parkinson's. It is group exercise for PD patients on the stationary bikes.

Teresa

@hopeful33250

@johnbishop and @barbarn

Yes, I'm finding a bike helpful as well. I've been using the NuStep (I think that is the right name). It looks like a recumbent exercise bike but the pedals and movable handle bars look like those on an Elliptical. I recently began having symptoms of neuropathy on the right inner leg. After having an EMG it turned out to be from a inflamed nerve at the root of a L5. The biking helps. I use it at my health club – it would be too expensive to buy for home use.

It works better for me than the traditional recumbent exercise bike – I don't get as winded from heart problems – not sure what difference it makes. Exercise bikes are also great for Parkinson's patients. There is a special program offered by YMCAs throughout the country called Pedaling for Parkinson's. It is group exercise for PD patients on the stationary bikes.

Teresa

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Hi Teresa (@hopeful33250),
I have an older ProForm Hybrid Trainer that is a cross between and elliptical and recumbent exercise bike. They are probably not quite as nice as the NuStep but a lot more affordable at $349. https://www.proform.com/hybrid-trainers/hybridtrainer. I very rarely use it in stand up mode. The elliptical exercise bikes are great for stretching and getting the legs moving which I really need since I can't walk very well or far.

John

@hopeful33250

@johnbishop and @barbarn

Yes, I'm finding a bike helpful as well. I've been using the NuStep (I think that is the right name). It looks like a recumbent exercise bike but the pedals and movable handle bars look like those on an Elliptical. I recently began having symptoms of neuropathy on the right inner leg. After having an EMG it turned out to be from a inflamed nerve at the root of a L5. The biking helps. I use it at my health club – it would be too expensive to buy for home use.

It works better for me than the traditional recumbent exercise bike – I don't get as winded from heart problems – not sure what difference it makes. Exercise bikes are also great for Parkinson's patients. There is a special program offered by YMCAs throughout the country called Pedaling for Parkinson's. It is group exercise for PD patients on the stationary bikes.

Teresa

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Hi John @johnbishop

Thanks for the information about the Trainer that you use. I'll check it out. I live in a small apartment, about how much space does it take up?

Teresa

Hi Teresa @hopeful33250 — the base of the unit is 4/12 ft in length and the pedals go out another foot when a pedal is extended. It's about 2 ft wide. The pedals are adjustable forward and backward, and lay flat for using the elliptical. You can program the tension but I just use as is and use my watch as a timer. I just got tired of replace the AAA batteries in the display unit.

John

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With the true definition of Restless legs being the URGE to move the legs. No matter how hard I am trying to sleep the legs and feet are just not comfortable and I am trying to find "the spot" to rest them finally! It happens to me while in the car on trips and it happens just sitting with the family watching the tele. It seems the more desire to keep the legs still, the worse the URGE TO MOVE the legs becomes. Most of the time the only way to relieve the awful feeling of MUST MOVE THE LEGS is to get up and walk, walk, walk and walk some more around the house usually dragging myself because I am mostly asleep or angry because I had to miss time that I wanted to watch a show or play a game or we have even had to stop the car so I can get up and walk.. It causes sleep deprivation, it causes us to do silly things like sleeping with soap or wrapping legs in plastic – if it works and its not harmful, then go for it!!! As for the rest of us there are some really fast working prescription medicines that I have not found to interact with other meds. They have side effects that you need to watch for such as "some" swollen ankles with some and urge to gamble or be sexually active more so.. but I have yet to meet someone that is affected by the last warning… lol. I have been helping people deal with RLS and PLMD for a few years now. I follow and sometimes consult a great Do in southern CA that specializes in RLS. He is a blessing to all that have gone to see him. =) He does run a web sight to give the very best suggestions and he answers
questions. I gave you enough information to find him. I am not cured, there is no cure but a certain little pill saved me from this beast. Augmentation is
one word that everyone wants to learn about before starting the pills.. sometimes you need a holiday from the drugs and then I have to rely on heavy duty narcotic drugs for the night time – 4pm starting time. Its just for 2 months. You can also rotate several of the drugs that stop RLS.. that doesn't work well on me. For some, it works well. Learn that many of the drugs used to Stop the pain of neuropathy do actually cause RLS and when stopped, it goes away after a month or two. Many, many found this out. Lyrica, Gabapentin is NOT on the list as of today's date. Lyrica is sometimes tried as a med to stop RLS.
I am not a medical professional, I am not giving medical advice. I am only sharing my experience as an everyday person.

@elmerfudd

With the true definition of Restless legs being the URGE to move the legs. No matter how hard I am trying to sleep the legs and feet are just not comfortable and I am trying to find "the spot" to rest them finally! It happens to me while in the car on trips and it happens just sitting with the family watching the tele. It seems the more desire to keep the legs still, the worse the URGE TO MOVE the legs becomes. Most of the time the only way to relieve the awful feeling of MUST MOVE THE LEGS is to get up and walk, walk, walk and walk some more around the house usually dragging myself because I am mostly asleep or angry because I had to miss time that I wanted to watch a show or play a game or we have even had to stop the car so I can get up and walk.. It causes sleep deprivation, it causes us to do silly things like sleeping with soap or wrapping legs in plastic – if it works and its not harmful, then go for it!!! As for the rest of us there are some really fast working prescription medicines that I have not found to interact with other meds. They have side effects that you need to watch for such as "some" swollen ankles with some and urge to gamble or be sexually active more so.. but I have yet to meet someone that is affected by the last warning… lol. I have been helping people deal with RLS and PLMD for a few years now. I follow and sometimes consult a great Do in southern CA that specializes in RLS. He is a blessing to all that have gone to see him. =) He does run a web sight to give the very best suggestions and he answers
questions. I gave you enough information to find him. I am not cured, there is no cure but a certain little pill saved me from this beast. Augmentation is
one word that everyone wants to learn about before starting the pills.. sometimes you need a holiday from the drugs and then I have to rely on heavy duty narcotic drugs for the night time – 4pm starting time. Its just for 2 months. You can also rotate several of the drugs that stop RLS.. that doesn't work well on me. For some, it works well. Learn that many of the drugs used to Stop the pain of neuropathy do actually cause RLS and when stopped, it goes away after a month or two. Many, many found this out. Lyrica, Gabapentin is NOT on the list as of today's date. Lyrica is sometimes tried as a med to stop RLS.
I am not a medical professional, I am not giving medical advice. I am only sharing my experience as an everyday person.

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Have you tried Hyland's Restless leg , a little pill you can get in the Health dept. of stores. I used to have RLS pretty bad and it helped so I could sleep

@elmerfudd

With the true definition of Restless legs being the URGE to move the legs. No matter how hard I am trying to sleep the legs and feet are just not comfortable and I am trying to find "the spot" to rest them finally! It happens to me while in the car on trips and it happens just sitting with the family watching the tele. It seems the more desire to keep the legs still, the worse the URGE TO MOVE the legs becomes. Most of the time the only way to relieve the awful feeling of MUST MOVE THE LEGS is to get up and walk, walk, walk and walk some more around the house usually dragging myself because I am mostly asleep or angry because I had to miss time that I wanted to watch a show or play a game or we have even had to stop the car so I can get up and walk.. It causes sleep deprivation, it causes us to do silly things like sleeping with soap or wrapping legs in plastic – if it works and its not harmful, then go for it!!! As for the rest of us there are some really fast working prescription medicines that I have not found to interact with other meds. They have side effects that you need to watch for such as "some" swollen ankles with some and urge to gamble or be sexually active more so.. but I have yet to meet someone that is affected by the last warning… lol. I have been helping people deal with RLS and PLMD for a few years now. I follow and sometimes consult a great Do in southern CA that specializes in RLS. He is a blessing to all that have gone to see him. =) He does run a web sight to give the very best suggestions and he answers
questions. I gave you enough information to find him. I am not cured, there is no cure but a certain little pill saved me from this beast. Augmentation is
one word that everyone wants to learn about before starting the pills.. sometimes you need a holiday from the drugs and then I have to rely on heavy duty narcotic drugs for the night time – 4pm starting time. Its just for 2 months. You can also rotate several of the drugs that stop RLS.. that doesn't work well on me. For some, it works well. Learn that many of the drugs used to Stop the pain of neuropathy do actually cause RLS and when stopped, it goes away after a month or two. Many, many found this out. Lyrica, Gabapentin is NOT on the list as of today's date. Lyrica is sometimes tried as a med to stop RLS.
I am not a medical professional, I am not giving medical advice. I am only sharing my experience as an everyday person.

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@elmerfudd – thank you for the information. Through that I am able to find drs in Colorado that might be able to help. Those of us who suffer with this can empathize with you so well. Sometimes the drugs seem to work better than at other times, finding what triggers the problem is the worst! Also, my worst side effect of the drugs is dizziness, have found a 'walking stick' to be a necessity when I'm outside. Recently fell, concussion, stitches – should have been using the walking stick in the house!! Wish I could get away from the drugs, but when I sit down to relax there is NO WAY I would stop them!!!!

@elmerfudd

With the true definition of Restless legs being the URGE to move the legs. No matter how hard I am trying to sleep the legs and feet are just not comfortable and I am trying to find "the spot" to rest them finally! It happens to me while in the car on trips and it happens just sitting with the family watching the tele. It seems the more desire to keep the legs still, the worse the URGE TO MOVE the legs becomes. Most of the time the only way to relieve the awful feeling of MUST MOVE THE LEGS is to get up and walk, walk, walk and walk some more around the house usually dragging myself because I am mostly asleep or angry because I had to miss time that I wanted to watch a show or play a game or we have even had to stop the car so I can get up and walk.. It causes sleep deprivation, it causes us to do silly things like sleeping with soap or wrapping legs in plastic – if it works and its not harmful, then go for it!!! As for the rest of us there are some really fast working prescription medicines that I have not found to interact with other meds. They have side effects that you need to watch for such as "some" swollen ankles with some and urge to gamble or be sexually active more so.. but I have yet to meet someone that is affected by the last warning… lol. I have been helping people deal with RLS and PLMD for a few years now. I follow and sometimes consult a great Do in southern CA that specializes in RLS. He is a blessing to all that have gone to see him. =) He does run a web sight to give the very best suggestions and he answers
questions. I gave you enough information to find him. I am not cured, there is no cure but a certain little pill saved me from this beast. Augmentation is
one word that everyone wants to learn about before starting the pills.. sometimes you need a holiday from the drugs and then I have to rely on heavy duty narcotic drugs for the night time – 4pm starting time. Its just for 2 months. You can also rotate several of the drugs that stop RLS.. that doesn't work well on me. For some, it works well. Learn that many of the drugs used to Stop the pain of neuropathy do actually cause RLS and when stopped, it goes away after a month or two. Many, many found this out. Lyrica, Gabapentin is NOT on the list as of today's date. Lyrica is sometimes tried as a med to stop RLS.
I am not a medical professional, I am not giving medical advice. I am only sharing my experience as an everyday person.

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@elmerfudd -P.S. have you tried a tens unit?

@elmerfudd

With the true definition of Restless legs being the URGE to move the legs. No matter how hard I am trying to sleep the legs and feet are just not comfortable and I am trying to find "the spot" to rest them finally! It happens to me while in the car on trips and it happens just sitting with the family watching the tele. It seems the more desire to keep the legs still, the worse the URGE TO MOVE the legs becomes. Most of the time the only way to relieve the awful feeling of MUST MOVE THE LEGS is to get up and walk, walk, walk and walk some more around the house usually dragging myself because I am mostly asleep or angry because I had to miss time that I wanted to watch a show or play a game or we have even had to stop the car so I can get up and walk.. It causes sleep deprivation, it causes us to do silly things like sleeping with soap or wrapping legs in plastic – if it works and its not harmful, then go for it!!! As for the rest of us there are some really fast working prescription medicines that I have not found to interact with other meds. They have side effects that you need to watch for such as "some" swollen ankles with some and urge to gamble or be sexually active more so.. but I have yet to meet someone that is affected by the last warning… lol. I have been helping people deal with RLS and PLMD for a few years now. I follow and sometimes consult a great Do in southern CA that specializes in RLS. He is a blessing to all that have gone to see him. =) He does run a web sight to give the very best suggestions and he answers
questions. I gave you enough information to find him. I am not cured, there is no cure but a certain little pill saved me from this beast. Augmentation is
one word that everyone wants to learn about before starting the pills.. sometimes you need a holiday from the drugs and then I have to rely on heavy duty narcotic drugs for the night time – 4pm starting time. Its just for 2 months. You can also rotate several of the drugs that stop RLS.. that doesn't work well on me. For some, it works well. Learn that many of the drugs used to Stop the pain of neuropathy do actually cause RLS and when stopped, it goes away after a month or two. Many, many found this out. Lyrica, Gabapentin is NOT on the list as of today's date. Lyrica is sometimes tried as a med to stop RLS.
I am not a medical professional, I am not giving medical advice. I am only sharing my experience as an everyday person.

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Have you seen my post a while back on RLS> and using soap !!!!!!!! to stop them Unfortunately that doesn't work for everyone, I always thought the "CURE" was psychosymatic, but one night I woke up and my legs were all over the place. I wondered where the bar of soap I had under the bottom sheet went, (doesn't need to be near your legs!) but it had fallen off the top of the mattress and was on the side of the mattress. When I put it back, all was fine again. Seems that the only bar of soap the does NOT work is Dial.! @gailffaith.

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