trying a radically different approach

Please share your experiences, successes, and failures in using non-drug therapies for RLS/WED (methods of relief that don't involve swallowing or injecting anything), including compression, heat, light, stretches, acupuncture, etc. Also under this heading, medical interventions that don't involve the administration of a medicine to the body (eg. varicose-vein operations, deep-brain stimulation). [This forum contains Topics started prior to 2009 that deal with Non-prescription Medicines, Supplements, & Diet.]
peanut1
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trying a radically different approach

Postby peanut1 » Sun Mar 01, 2015 5:47 pm

I have tried just about everything to curtail WED with limited to no success. The acupuncture herbs helped me get a consistent 3.5 hours a night which is great, but not enough sleep. NONE of the prescription drugs are working right now. Tried doctor's combos and they still don't work. Currently, I found a great counselor to help me with the complex PTSD that I've had since I was 3 or 4 y/o. She gave me recommendations to calm the PTSD when the WED acts up. The first night, I tried her recommendation, the legs calmed down because I was able to calm down significantly and I still got my 3.5 hours but functioned much better the next day. Keep in mind that I have done several things to calm down on my own: acupuncture, qi gong and meditation and it all helped some, but her recommendations were specific to my situation. Last night, I tried the techniques and slept almost 8 hours--all with no meds because they don't work anyway. However, I did have an acupuncture treatment so that could be why I slept as well as I did last night.

I do not know if this will necessarily diminish the WED only time will tell, but if it helps me function better with what little sleep I get I will be happy. Perhaps I can function on less sleep than I think I need. Perhaps I can find peace. it will be interesting to see how things work from a backassed angle this way.

ViewsAskew
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Re: trying a radically different approach

Postby ViewsAskew » Mon Mar 02, 2015 12:19 am

Our bodies are so complex - and when you include trauma - physical or psychological - it gets so hard to figure things out.

For what it's worth, I've seen very good results with a technique used for people who've had any kind of trauma - from rape to war to car accidents. The doctor who created it is Peter Levine - the main book he wrote about it is called Waking the Tiger. If you can find a practitioner who uses his methods, it might be very helpful. (In case what you're doing doesn't work). I've attended workshops for practitioners that were led by Levine and have seen first hand how quickly people can get results. He believes that we can heal ourselves with some basic training and work; he also believes that trauma is stored in our bodies. He gives the example of a gazelle being chased by a tiger and escaping. Immediately afterward, animals who have been scared go through a physical process to shed that from their bodies - they literally shake it off and may make loud vocalizations. But, we're told to keep it in. In his 45 years working with trauma survivors, he finds that if they can release it physically, that it loses its hold.

More than you wanted most likely and it may not be of interest to you. As my signature says....take what you need and leave the rest :-).
Ann - Take what you need, leave the rest

Managing Your RLS

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badnights
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Re: trying a radically different approach

Postby badnights » Tue Mar 03, 2015 5:19 am

Perhaps I can function on less sleep than I think I need. Perhaps I can find peace.
This type of attitude is the one I have these days - not sure where I got it from, but I'm thankful, because it seems to help.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
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peanut1
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Re: trying a radically different approach

Postby peanut1 » Tue Mar 03, 2015 9:53 pm

Ann,

thanks for the information, I will definitely look him up. For the past 5 years, I've been solely focusing on getting the trauma out of the body with acupuncture and other alternative modalities. I know for a fact this is imperative for the healing process as talk only does so much.

Beth,

So glad you are finding more peace. I believe finding peace is a huge part of healing if not THE biggest part.

Last night I got 7 hours of wonderful sleep. Woke up with the legs and practiced the counselor's techniques. I'm not saying this is a cure as my WED goes up and down and this could be part of the "UP" phase, but it's interesting that it went so quickly from bad to UP with her techniques. I really do think this will help, how much I do not know.

ViewsAskew
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Re: trying a radically different approach

Postby ViewsAskew » Tue Mar 03, 2015 10:51 pm

Sounds very promising. Hope it continues to work.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

peanut1
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Re: trying a radically different approach

Postby peanut1 » Wed Mar 04, 2015 9:10 pm

Ann,

I also put my self on the wait list for the book you recommended. Looks great--thank you!


Kathy

ViewsAskew
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Re: trying a radically different approach

Postby ViewsAskew » Thu Mar 05, 2015 12:07 am

peanut1 wrote:Ann,

I also put my self on the wait list for the book you recommended. Looks great--thank you!


Kathy


Wow, a wait list????? I hope it's helpful. I only know a handful of people who've used it, but it's helped all of them.

You may be familiar with this, too...There is research that says that we can rewire/recreate memories. I've seen that work well, also. I know a therapist who used guided imagery to help people start to go through the trauma, but change the outcome and have it be different - for example, you trip the rapist and he falls and you get away, or you are able to yell and somebody comes. The research shows that our brains truly cannot distinguish truth from fiction in memory. Which is bad news for our jury system, bad news for anything we remember as children, and great news for trauma survivors!
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

peanut1
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Re: trying a radically different approach

Postby peanut1 » Sat Mar 07, 2015 5:25 pm

Ann,

It's funny that my counselor said she has counseled many people with the same trauma I have where none of the sleep meds worked at all. Have not tried the other approach, still have large gaps in memory.

ViewsAskew
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Re: trying a radically different approach

Postby ViewsAskew » Mon Mar 16, 2015 6:33 am

Interesting.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Norm
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Re: trying a radically different approach

Postby Norm » Sun Jul 26, 2015 10:22 am

I sympathize with your situation because I was in the same situation with WED. My WED is from the knee down. I didn't try acupuncture but I tried everything else. You may want to try some of these. Some ideas: Pressing and holding the WED trigger point with the fist or applying vibration from a powerful barber shop vibrator gave me some extra sleep. Deep knee bends also helped a lot. Toe push ups were a good one for me too. I took a cut off broom handle and placed a foam rubber cushion on one end. I pressed this against each trigger point until the point was very painful. The pain lasted only a few minutes but the trigger point stayed calm for most of the night.

I found no complete remedy until I tried using the Chronic Pain (CP) Relief Wand. It put my WED/RLS trigger points completely to sleep for the night. When they are asleep, I sleep. Now I sleep very well all night every night. I know the location of each of these trigger points and use the Wand on the active WED trigger points before going to bed each night. It takes about 20 minutes to put all my trigger points to sleep each night. I lay in bed for 20 minutes before so to know which trigger points are active that night, then I treat them accordingly. Once in a while, I miss a trigger point and wake up with leg twitching. I can easily evaluate where the point is located and treat it with the Wand. It takes only a minute or two and I go back to sleep.

Norm
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Re: trying a radically different approach

Postby Norm » Sun Jul 26, 2015 1:44 pm

ViewsAskew Posted

"You may be familiar with this, too...There is research that says that we can rewire/recreate memories. I've seen that work well, also. I know a therapist who used guided imagery to help people start to go through the trauma, but change the outcome and have it be different - for example, you trip the rapist and he falls and you get away, or you are able to yell and somebody comes. The research shows that our brains truly cannot distinguish truth from fiction in memory. Which is bad news for our jury system, bad news for anything we remember as children, and great news for trauma survivors!"

An excellent book for anyone to read which can help show how to direct and control our subconscious is "Psycocybernetics" written by Dr. Maxwell Maltz and was originally published in 1960. It has been in continuous print for all these years due to it's popularity and is widely available everywhere. I don't know if the subconscious can help with WED/RLS but if it can, this book would be a must read. It can be used to change bad habit patterns, addiction, and improving ones outlook on life. Some with RLS must deal with addiction. Also, bad memories can create habit patterns which need to be changed in order to let time heal and move on.

timo
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Re: trying a radically different approach

Postby timo » Tue Jul 28, 2015 8:21 pm

Hi Norm, could you be specific about RLS trigger points and their location. I have the Trigger Point Therapy Workbook by Claire Davis which has helped for many things other than RLS.

ViewsAskew
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Re: trying a radically different approach

Postby ViewsAskew » Wed Jul 29, 2015 12:56 am

timo - I have that same book. And I do have what Davies would call myafascial trigger points in many places - primarily shoulders, neck, upper arms, hips and buttocks.

The pain they cause isn't anything like RLS - for me. My guess is that Norm's term is being used differently than the way Davies is using it. Pain cluster? Nerve cluster? I don't know - I just know my RLS sensations do not originate from my trigger points, nor do they seem to originate from anywhere - they are diffuse and sort of just are, if that makes sense. Mine also aren't painful - they are relentless, annoying, exasperating, anxiety producing, electrical....but not painful.

In another post, I mentioned that I think there are multiple types of RLS and that RLS(WED) can be all too easily confused with other diseases (or had concurrently). My guess - and just a guess - is that Norm's variety of RLS isn't the same as mine and/or he has additional pain issues that this helps.

Just my two cents----not worth as much as it used to be :-).
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Norm
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Re: trying a radically different approach

Postby Norm » Wed Jul 29, 2015 4:12 pm

Hi timo,

Trigger points are the best description I know. I too have RLS from the knee down. I also have a pacemaker which is not effected from this treatment, even during an ECG. The muscles run up and down the leg. The nerve trigger points lay deep within the muscle. A particular muscle may have several trigger points. To find these trigger points with the Chronic Pain Relief Wand, I moisten the skin and slide the Wand up and down the skin (muscle) in the area of the RLS/WED symptom with the Intensity set to 3. This setting will vary but it is set as high as is comfortable. (I normally use a setting of 6 for faster treatment.) When the trigger point is under the Wand, it will sting or itch. My left leg feels more like the Wand is scratching an itch. My right leg feels more like a pure sting. I believe this is due to the difference in blood circulation in each leg. I must wear compression stockings.

Press and hold the Wand over each trigger point until the stinging subsides or goes away. For trigger points larger than 3/4 inch, this process is repeated to desensitize the entire area of the trigger point. When I use a setting of 6, the trigger point will completely desensitize in 15 seconds except with the most severe type symptoms. Treatment will take longer with lower Intensity settings. The worse the symptom, the more pronounced is the stinging of the trigger point. Only the trigger points sting with the Wand in place. The exact position of the sting is easy to tell with the Wand. Once these locations are known, they can be easily located each evening as needed. They do not move but they become active and inactive from time to time. I have a large one in the calf of my leg and many others on each side of my leg.

Each night I watch TV in bed 15 minutes or until symptoms appear. It takes me 20 minutes to desensitize all the active trigger points and my symptoms are gone for the night. Once in a while one will flare up in the middle of the night with muscle twitching and I awaken. I get up and treat the trigger point. In one or two minutes, I am back in bed for the rest of the night. Since using this device, I have not had any sleep problems. I can live normally in comfort.

Once in a while I get daytime RLS. I use the Wand for a few minutes and the symptoms are gone for the rest of the day.

Norm
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Re: trying a radically different approach

Postby Norm » Wed Jul 29, 2015 5:28 pm

Hi ViewsAskew,

You are certainly correct, My description of trigger points is my own terminology since I don't know what else to call them. I have not read the book by Davies but a friend had read this book and suggested that they were trigger points of a different kind. I agree with you that there are many different kinds of RLS/WED. There is more unknown than known about this disease. I hope to shed a little light on one small corner of a difficult subject.

When I tried the Chronic Pain (CP) Relief Wand on my RLS, I found these trigger points at or very near the site of the RLS symptoms. When my RLS symptom is pain, the trigger point is in the exact same location as the pain. The same with itch. With muscle anxiety symptoms, the point is somewhere nearby. These points sting due to the application from the Wand. These point also are the origin to all of my RLS symptoms since once their communication with the brain is stopped with the Wand, the RLS symptoms for that area disappear. The Wand compresses the nerve and focuses a laminar current through the nerve fibers, muscle fibers, and the nerve branches under the Wand. This decouples communication from the brain to that particular nerve for an extended period of time. Without this communication, the RLS symptoms disappear for an extended period. (These same points are sometimes sensitive when a finger is pressed against them.)

This may be confusing. Hope this information can help someone better understand their particular condition.


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