Living With RLS for 20 years

[Phillips2768]

While a new member, I have read the postings here from time to time years ago and they have greatly helped me cope with my own severe RLS. I am age 74, have a pacemaker, and most significantly, RLS drugs make me sick. As my RLS symptoms worsened over the past 15-20 years, it seems that just as the severity of the symptoms increase beyond the capabilities of one remedy, I find another remedy that works.
At first, my RLS symptoms were intermittant and mild. It was relatively easy to relieve symptoms and sleep well with remedies like tonic water, dietary supplements, and mild exercise before bedtime. Certain lotions, hot baths, and massage also worked well. The awful creepy crawling feeling, leg jerking, and pain-itch of RLS was easily managed with what now seems like simple measures.
Over the years as my RLS continued to grow worse and my physicians began to run out of ideas, desperation set in as I searched for anything that would help me sleep without RLS drugs. I began to focus on the RLS symptom areas and what to do. These symptom areas were stationary but at times certain areas became much more active than others. I was able to get sleep by doing toe-heel push ups and deep knee bends before bedtime. Relief was also possible by using a powerful motorized barber shop vibrator with the hand pad pressed firmly against each RLS nerve center. I also found relief by applying intense pressure to the leg jerking trigger nerves. The pressure method worked well but was also very painful and frequently left bruises. Often I have been left to exercise at all hours of the night with serious sleep problems.
Recently I discovered how to use the CP Relief Wand for RLS. It is intended for general pain relief but works extremely well for my RLS. It is without a doubt the best remedy that I have ever come across. I use it every night before bedtime to desensitize the RLS nerve centers and I sleep perfectly well all night, every night. It takes less than a minute treatment time per symptom area. When using the Wand I moisten the skin but I don’t use the gel pads. Instructions for using the CP Relief Wand for RLS can be found by web searching “How to use the CP Relief Wand”.
Currently, I am managing my severe RLS very well. It seems that as one door closes, another always seems to open.

[Polar Bear]

It is wonderful that you have managed for so long without the benefit of medication. And your optimism in certainly uplifting.
I had not heard of the CP Wand before and did a quick google, it's a type of tens machine.
Some time ago I tried my own ordinary tens machine without much benefit but the CP Wand looks more adaptive as you can gently move it around.

Indeed we are all friends of the toe/heel push ups, the knee bends, and I have often at times been reduced to punching my legs/thighs especially if a passenger in a car and trying to contain myself until I can get out of the car and go walkabout!

Have you had your ferritin serum checked, this is not a check done in normal blood work, you need to ask for it. Doctors may say a level of 20 is ok but WED/RLS sufferers benefit if it is around 100, so you should have it done and ask what the reading is, don’t just accept ‘normal’.

I congratulate you on your coping mechanisms in particular, as it seems you have already tried WED/RLS medication and found it wanting.

[Phillips2768]

I have used my fists to hit my leg too. It works but My wife complains about the bruising.

I am seeing my Neurologist in a week and I will ask him about the ferritin serum level. Thank you for the tip. May I ask, what do you use to increase the ferritin serum level?

Also, the CP Relief Wand is a TENS device with a special electrode set that compresses the nerve and directs the current through the nerve spot. Where I used to hit my leg to stop the jerking, I now press the Wand against the spot and increase the Intensity till it stings (usually 5-6). It takes 20 seconds or so at that intensity level to eliminate RLS symptoms from that spot. Now I don't need to hit my legs. On one leg, the Wand feels like scratching an itch for a few seconds during treatment. One the other it stings for a few seconds. I have gotten used to the sting. It is a whole lot better than the pain from pressure or hitting the leg.

As to drugs...I would not be able to live with myself if I became addicted to opiate drugs, so I fight it out and stay positive about the whole matter.

[ViewsAskew]

I often use my fists - so does my sister. Many people find it very strange to see you whacking on your legs!

I've never found one spot on my leg that is better, though....wonder where it is?

Per the addiction - it's SO unlikely unless you have a history of addiction. The research, so far, has shown we're less likely than the average person to have issues with opioids. If you ever have to, there are many ways to ensure you do not have problems. So, let us know if you ever get to that point and we can help you figure out how to do it in a safe way.

[badnights]

May I ask where you place the electrodes? or, more to the point, how did you choose where? How does one identify "RLS nerve centers" and "leg jerking trigger nerves"? I don't seem to have any such things, or I haven't noticed if I do, but maybe if I put pressure on the same areas you do, I will notice some relief.

[Phillips2768]

The electrodes are pressed against the skin in the area of the symptoms. Yes, I agree, that until you realize that there are specific nerves under the skin, there is likely only a general anxious feeling before leg jerking. The CP Relief Wand does most of the work finding the nerves for you and you can find the nerve by placing the Wand over the nerve so that it is located anywhere under or between the electrodes. The laminar current allows you to feel the exact location of the nerve. It is something like touchy feely radar except that it is desensitizing the nerve when in place over the nerve.

[Phillips2768]

When I first hit my leg to try to stop the jerking, that is when I began searching for the exact location of the pesky RLS nerves. Hitting only works if you hit the right spot. The CP Relief Wand helps find the spot and it does "all the hitting" by gently putting the nerve to sleep for the night without harm.

[ViewsAskew]

When I first hit my leg to try to stop the jerking, that is when I began searching for the exact location of the pesky RLS nerves. Hitting only works if you hit the right spot. The CP Relief Wand helps find the spot and it does "all the hitting" by gently putting the nerve to sleep for the night without harm.

Hitting works great as long as I hit anywhere - I usually whack up and down in fast karate-chop motions. But, since I have no reference to a spot like this, maybe it's like talking about apples and oranges.

[Phillips2768]

Re: Karate chops
I am sure that everyone has a different sensation with RLS symptoms. Until I focused on the specific nerves, all I had was the general feeling of anxiety in the muscles before my leg jerked. Also, you described muscle anxiety is so intense that you jerk your leg voluntarily before the anxiety gets too high.

When I first started to analyze the nerves around the RLS symptom area, I cut off the end of a broom handle (around 6-8 inches long). I padded the round end of the handle and applied pressure all around the area of the muscle anxiety. I usually found one or two spots the size of a dime. Sometimes they were the size of a quarter or silver dollar. Sometimes they were elongated. On the back of the calf of one leg, I have one 2 inches in diameter. When I pressed the rod against each of these spots, they sometimes itched and sometimes hurt. When I held the pressure on a particular spot, it would begin hurting. The pain became intense when I kept the pressure applied. After a minute or so, I could release the pressure, the pain would greatly reduce and the RLS symptoms would disappear for the night, sometimes two nights.

It is likely that your karate chops somewhat duplicate this kind treatment. When I tried using the CP Relief Wand, I was able to accomplish the same result without pain or bruising and with treatment times of much less than a minute with an intensity setting of 5-6. The interesting thing was that with the Wand, these spots are easy to find because they sting or itch when the Wand is activated over them. In addition, the Wand helps to intuitively locate all the edges of the RLS spots due to its laminar current flow. Each of these RLS spots can be referred to as trigger points. I found that these same spots, involuntarily trigger the muscle after the anxiety sets in and comes to a peak.

Everyone is different though. RLS is elusive and the easiest treatment is with drugs if there are no side effect problems with the drugs. This is my problem, the drugs make me sick.