Success

[Nieceali]

Hi
I felt inclined to share my success with ending 4 years of suffering from RLS. It’s been 6 months since I’ve had symptoms w/o taking a dopamine agonist & klonopin. I was on an SSRI for years and through trial & error learned that my symptoms increased with any drug/supplement that affected my serotonin levels. In addition, the dopamine agonist (roprinole) was making symptoms worse. Also, someone loaned me a Healy device (frequency healing) that I believe made a big difference. I was told once you have RLS you’ll always have it & I was prepared to do opiate therapy, but gratefully it’s been 6 months free from RLS & no medications/supplements treating it.
For what it’s worth I do want to mention that I also addressed past childhood trauma that I believe gets stored in our nervous systems. I feel the trauma therapy has contributed to a calmer nervous system helping to alleviate long-term symptoms as well.
I do hope someone benefits from this feedback, for I have tremendous compassion and empathy for all who live with this debilitating condition with little treatment options. I wish you long-term relief.

[Rustsmith]

One of the side effects of almost all anti-depressants (SSRI, SNRI and TCA) is restlessness that is either RLS or essentially the same thing as RLS. Whereas primary RLS is not something that can be cured, restlessness that occurs as a side effect of anti-depressant use or any of several other drugs that alter the brain's dopamine levels can often be relieved by getting off of the drug or sometimes even decreasing the dose. That DOES NOT MEAN that you should stop taking an anti-depressant if you are taking it to treat depression. However, some doctors prescribe this class of drugs to treat the insomnia that occurs with RLS. As a result, instead of helping with the sleep issues of RLS, the anti-depressant just makes things worse.

[Monolight1]

I'm so thankful that you could recover from RLS without any medication, I'm jelous in a good way, not many get to say the things you spoke in this thread

[BillyWakarusa]

I am new to this forum. This post is obviously anecdotal and might be unique to me, but after 65 years of RLS beginning at age 11 and slowly progressing, I am astonished at the effectiveness of this non-medication treatment that I learned not from treatment for RLS, but in the course of rehab from aortic valve surgery 12 years ago. After that surgery, I began the prescribed course of physical therapy that included stretches of various muscle groups in the body. I still do these virtually every day, but the stretches in the muscles of the calf, hamstrings, quadriceps, and tibialis muscles nearly completely prevents my RLS which had been maddening. It is preventative more so when I do them later in the day rather than in the AM, but completely therapeutic and puts a stop to it at night if the RLS is already underway. I can get up from bed in the dark, lean against a wall, and complete these in about 3 minutes. When I get back in bed, the relief is total about 95% of the time, and is so effective that the ensuing sleep comes fast. Every now and then, it can recur some hours later and wake me up, but a second set of these stretches always puts a stop to it. I can describe these simple exercises, but not in this post which is already long enough. But I will describe them in detail in response to any request. There are some other things I can relate regarding lab tests, meds, and co-morbid conditions, if asked, since I am a retired physician. These are interesting, but maybe only to me. Reply if anyone would like the details about this simple and non-chemical preventative and therapeutic method that has worked for me and doesn't cost one cent. I speculate that the episodes involve sensory nerve receptors in the leg muscle cells themselves, and that these receptors are quieted by stretching of those muscle cells. This would make sense, because the episodes begin mainly at night when the muscles are not being used.

[Rustsmith]

I used to be a competitive runner (I finally quit when I was 65). While I was running, I was training six days a week and had to stretch my leg muscles every evening just to keep them from tightening up. Maybe this helped delay the shift of my RLS from mild/moderate to severe/very severe but I will never really know what triggered that change.

Now, on nights when my RLS flairs up, I can occasionally get it to go away by stretching. That is the first thing that I try because I don't have to get out of bed to do it. Most of the time, I end up having to get up and go soak my legs in hot water. But when it is really bad, I am up and walking all night.

[BillyWakarusa]

I'm guessing that the running with stretches did delay the progression of it. I used to swim a mile per day, and my RLS continued slowly worsening in frequency. It was only the stretches each day beginning after my valve surgery in 2012 that it began to get better and better, As you mentioned, if it is happening in only the calf muscle or tibialis muscle, I can do that in bed without getting up. It is odd that it usually only involves one side or one leg at a time. After awhile, it can switch sides or move to a different muscle group. That is why its best to get up and do all of them.

[Rustsmith]

I forgot to add that my RLS also affects my abdominal muscles. Stretching those muscles is difficult and situps to get some movement helped, but only temporarily.

As for my legs, my RLS hits both legs at the same time. There are many whose RLS is one leg or the other, but mine was both legs. My wife knew what was going on when I would start simultaneously stretching both hamstrings or calf muscles.

[Charli4149]

I would be interested to hear what stretches you do that help . Thanks

[ViewsAskew]

I would be interested to hear what stretches you do that help . Thanks

I really thing that it is different for all of us. Some of us find our symptoms are in our feet. Some our calves. Some our thighs. Some our abdomens. Some our arms.

Mine are mostly in my thighs and arms. I do stretches that activate THOSE muscles. I also do exercises that tired those muscles to fatigue - for example, a squat held for a very long time works well for me. So do "hurdler" stretches. Those might not help you at all, though.

[SHurle]

I am new to this forum. This post is obviously anecdotal and might be unique to me, but after 65 years of RLS beginning at age 11 and slowly progressing, I am astonished at the effectiveness of this non-medication treatment that I learned not from treatment for RLS, but in the course of rehab from aortic valve surgery 12 years ago. After that surgery, I began the prescribed course of physical therapy that included stretches of various muscle groups in the body. I still do these virtually every day, but the stretches in the muscles of the calf, hamstrings, quadriceps, and tibialis muscles nearly completely prevents my RLS which had been maddening. It is preventative more so when I do them later in the day rather than in the AM, but completely therapeutic and puts a stop to it at night if the RLS is already underway. I can get up from bed in the dark, lean against a wall, and complete these in about 3 minutes. When I get back in bed, the relief is total about 95% of the time, and is so effective that the ensuing sleep comes fast. Every now and then, it can recur some hours later and wake me up, but a second set of these stretches always puts a stop to it. I can describe these simple exercises, but not in this post which is already long enough. But I will describe them in detail in response to any request. There are some other things I can relate regarding lab tests, meds, and co-morbid conditions, if asked, since I am a retired physician. These are interesting, but maybe only to me. Reply if anyone would like the details about this simple and non-chemical preventative and therapeutic method that has worked for me and doesn't cost one cent. I speculate that the episodes involve sensory nerve receptors in the leg muscle cells themselves, and that these receptors are quieted by stretching of those muscle cells. This would make sense, because the episodes begin mainly at night when the muscles are not being used.

Hi - I am very interested in the stretching as I feel it does help. Could you detail exactly the sort of stretches you do please. Thankyou.

[Linda J]

I am new to this forum. This post is obviously anecdotal and might be unique to me, but after 65 years of RLS beginning at age 11 and slowly progressing, I am astonished at the effectiveness of this non-medication treatment that I learned not from treatment for RLS, but in the course of rehab from aortic valve surgery 12 years ago. After that surgery, I began the prescribed course of physical therapy that included stretches of various muscle groups in the body. I still do these virtually every day, but the stretches in the muscles of the calf, hamstrings, quadriceps, and tibialis muscles nearly completely prevents my RLS which had been maddening. It is preventative more so when I do them later in the day rather than in the AM, but completely therapeutic and puts a stop to it at night if the RLS is already underway. I can get up from bed in the dark, lean against a wall, and complete these in about 3 minutes. When I get back in bed, the relief is total about 95% of the time, and is so effective that the ensuing sleep comes fast. Every now and then, it can recur some hours later and wake me up, but a second set of these stretches always puts a stop to it. I can describe these simple exercises, but not in this post which is already long enough. But I will describe them in detail in response to any request. There are some other things I can relate regarding lab tests, meds, and co-morbid conditions, if asked, since I am a retired physician. These are interesting, but maybe only to me. Reply if anyone would like the details about this simple and non-chemical preventative and therapeutic method that has worked for me and doesn't cost one cent. I speculate that the episodes involve sensory nerve receptors in the leg muscle cells themselves, and that these receptors are quieted by stretching of those muscle cells. This would make sense, because the episodes begin mainly at night when the muscles are not being used.

I am currently taking Dr. Buchfuhrer's prescribed buprenorphine and naloxone (1/3 tab) per night. It is incredibly effective, but because I still have marked sleepiness after 7 weeksm I am super interested in the details of your stretches. The lab tests are also of interest, as I do plan to do iron testing also and hope to keep learning as I go. Thank you for posting and for any reply!

[Polar Bear]

Linda J....... You mention getting iron testing. Have you had your Ferritin Serum checked. This is important. This test is not done as part of usual blood tests and must be specifically requested. You should always know what your level is. Us rls sufferers benefit from a level up around 100 even though 'normal' may be anything from 20+.

[Lisamason5O]

I would love to know more about those stretches and anything else that you have found that helps relieve RlS. Thank you!

[Stainless]

I have to keep on my keep on my PC Doc to get Ferritin Serum every 6 months otherwise it doesn't happen.

My wife has a Healy device, I believe it to be snake oil. She has used it on me and herself for years but I see the frequency (no pun intended) has dropped considerably. As an engineer I know Frequency is the rate at which something occurs or is repeated over a particular period of time. Not an entity. Frequency of what? I would love to hear what the device does other than drain $1500 from your account. Just my opinion.

[Stainless]

I also meant to add "FDA warns about dental problems with buprenorphine medicines dissolved in the mouth". Something to be aware of. I had a lifetime dose of radiation to my jaw and have to be extra careful so I believe this is off my list of potential treatments.

Don't mean to be so negative. Just passing on what I have learned.