Peripheral neuropathy, RLS and PLMD

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).

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).

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.

Hi Barbarn,
Do the drugs help you at all. I’m on only 900mg of gabapentin which is no help. I use to take the max dose of 1800mg a day for pain but due to seizures I ended up taking the seizure max of 3600mg still no relief. I’ve never gotten any relief. Since I have taken Phenobarbital long term I’m wondering if my feet have soft tissue damage. My Neuropathy goes from my feet up to my waist. Anyone in the same situation??

Hi Barbarn,
Do the drugs help you at all. I’m on only 900mg of gabapentin which is no help. I use to take the max dose of 1800mg a day for pain but due to seizures I ended up taking the seizure max of 3600mg still no relief. I’ve never gotten any relief. Since I have taken Phenobarbital long term I’m wondering if my feet have soft tissue damage. My Neuropathy goes from my feet up to my waist. Anyone in the same situation??

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.

Hi Barbarn,
Do the drugs help you at all. I’m on only 900mg of gabapentin which is no help. I use to take the max dose of 1800mg a day for pain but due to seizures I ended up taking the seizure max of 3600mg still no relief. I’ve never gotten any relief. Since I have taken Phenobarbital long term I’m wondering if my feet have soft tissue damage. My Neuropathy goes from my feet up to my waist. Anyone in the same situation??

This contribution (my first) is PLMD specific.

I see no new posts since June 2018. Is this group still 'active?'

Ten years ago my wife documented PLMD in my legs while I was sound asleep. She is a remarkable sleeper, so once she analyzed the problem, she could ignore it and sleep. Her notes follow:

There was an interval of +/- 10 seconds between each spasm. And the spasms continued at least for 5 minutes, when I apparently fell asleep, so I don’t know if they stopped or I just relaxed.

J was unaware of it happening. This seemed likely to me, as he was definitely asleep.

My perception is that the muscles in his upper thighs spasm, two or three times. There is a fairly strong spasm, as if he “elbowed” me with his knees, followed by spasms which seemed to be less intense, and then building again in intensity. I was too busy counting to get an accurate sense of intensity, however.

My observations continue:

More recently, before I get to sleep, the PLMD process starts. Once it has started I cannot fall asleep. I placed my fingers on the leg that was moving and sensed a tightening of the long tendons (groin to knee) just before the spasm. I reasoned that it might pay to massage and put pressure on the attachment points. I've been able to use this technique to get to sleep. Has anyone else tried this technique?

I've been told that I have 'tight hamstrings.' Are there good exercises or is there physical therapy that works on overcoming PLMD, perhaps by focusing on loosening the hamstrings?

Consequent with the discovery that I have PLMD I developed 'sore legs.' Everything from the hip joints down is mildly painful. The skin even feels 'tight' sometimes as I sit down. It makes sense to me that every time PLMD takes over while I sleep my legs get an unsupervised and uncontrolled 'workout' that may be harmful over time. Is this documented?

I found an iPhone app (I have a classic iPhone 5 and prefer the small format) mentioned that allowed the logging of PLMD with no extra hardware. Unfortunately it was withdrawn from the AppStore a few months before I learned about it. Have I missed something? Having to be 'wired' would probably keep me awake.

I cannot yet post a link which mentions the app, KickSleep:

Google the string below, including the quotes, and it should produce one hit.

"OPUS: Implicit night sleep monitoring using smartphones"

I certainly want to explore all the alternatives before becoming dependent on Parkinson's Disease medications to get a 'good nights sleep.'

Comments anyone?

thanks
baumgrenze

This contribution (my first) is PLMD specific.

I see no new posts since June 2018. Is this group still 'active?'

Ten years ago my wife documented PLMD in my legs while I was sound asleep. She is a remarkable sleeper, so once she analyzed the problem, she could ignore it and sleep. Her notes follow:

There was an interval of +/- 10 seconds between each spasm. And the spasms continued at least for 5 minutes, when I apparently fell asleep, so I don’t know if they stopped or I just relaxed.

J was unaware of it happening. This seemed likely to me, as he was definitely asleep.

My perception is that the muscles in his upper thighs spasm, two or three times. There is a fairly strong spasm, as if he “elbowed” me with his knees, followed by spasms which seemed to be less intense, and then building again in intensity. I was too busy counting to get an accurate sense of intensity, however.

My observations continue:

More recently, before I get to sleep, the PLMD process starts. Once it has started I cannot fall asleep. I placed my fingers on the leg that was moving and sensed a tightening of the long tendons (groin to knee) just before the spasm. I reasoned that it might pay to massage and put pressure on the attachment points. I've been able to use this technique to get to sleep. Has anyone else tried this technique?

I've been told that I have 'tight hamstrings.' Are there good exercises or is there physical therapy that works on overcoming PLMD, perhaps by focusing on loosening the hamstrings?

Consequent with the discovery that I have PLMD I developed 'sore legs.' Everything from the hip joints down is mildly painful. The skin even feels 'tight' sometimes as I sit down. It makes sense to me that every time PLMD takes over while I sleep my legs get an unsupervised and uncontrolled 'workout' that may be harmful over time. Is this documented?

I found an iPhone app (I have a classic iPhone 5 and prefer the small format) mentioned that allowed the logging of PLMD with no extra hardware. Unfortunately it was withdrawn from the AppStore a few months before I learned about it. Have I missed something? Having to be 'wired' would probably keep me awake.

I cannot yet post a link which mentions the app, KickSleep:

Google the string below, including the quotes, and it should produce one hit.

"OPUS: Implicit night sleep monitoring using smartphones"

I certainly want to explore all the alternatives before becoming dependent on Parkinson's Disease medications to get a 'good nights sleep.'

Comments anyone?

thanks
baumgrenze