A Natural RLS Remedy that will work for EVERYONE

Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS/WED, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances. [Posts on these subjects created prior to 2009 are in the Physical Treatments forum.]

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
Betty/WV
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Postby Betty/WV » Sat Apr 10, 2010 7:17 pm

Zach: You said all the things I was thinking. I'm not as good expressing myself. Thats because for years, I was practically brain dead from not sleeping.

I tried so many remedies, and so many doctors. Until I was put on Mirapex. Now my RLS is much better and I sleep better. I don't have any of the symptoms that have been mentioned. (From the Mirapex)

Dr. B has been such a help to me as to others. Through his books, and imagine-----you can email him with a question and he answers back in a day or two. I'm still amazed at that. He is truly a whiz when it comes to RLS. I trust him completely.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

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SquirmingSusan
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Postby SquirmingSusan » Sat Apr 10, 2010 11:13 pm

The fact that you don't even know who Dr. B is, proves your ignorance about RLS. He has been a part of writing just about ALL of the professional books on the subject as well as the Mayo Clinic Algorithm for the Management of RLS. If you had done any actual research on RLS, you would have come across his name. He is all about studies, valid scientific studies.

If your RLS responds to anti-inflammatory treatment of any variety, pharma or natural, then it is not RLS. Many people have been convinced that they had RLS, when they in fact had a neuropathy. Neuropathy = inflammation of the nerves. There is a particular variety of neuropathy called small fiber neuropathy which apparently feels very much like RLS.
Susan

ViewsAskew
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Re: re: A Natural RLS Remedy that will work for EVERYONE

Postby ViewsAskew » Sat Apr 10, 2010 11:33 pm

davew wrote: I'm simply defending my own remedy ... because I know it works. And, I know it will work for anyone that tries it. It takes time and patience, but it will work.



Dave, please help me understand how you know it will work. I'm not saying it won't work, just wanting to understand your thinking about it.
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.

badnights
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Postby badnights » Sun Apr 11, 2010 12:54 am

davew wrote:What I'm telling you is based on actual proof. The proof being, I have treated the inflammation in my legs, and my RLS has faded away to nothing.
This statement reveals that you don't understand the concept of scientific proof.

A scientific study proving the efficacy of a remedy requries more than just one person saying it works. A remedy is judged to be effective if it produces positive results in a statistically significant sample of the population. One out of one is not statistically significant. Even 10/10 isn't significant when the entire population is huge.

Second, for a study to have proved that something worked, the scientific community (and the FDA and other national drug-regulating bodies) demands at least a blinded study and preferably a double-blinded study, in which neither patient nor researcher knows what substance the patient is receiving - the substance under trial or something else which could be an already-approved drug or a placebo. This is because expectations influence the results of experiments.

Third, the results have to be weighted to remove the influence of other factors - were the subjects already taking medication, what kind, was it working, what ages are they, what ethnicities (both the latter may play a role in prevalence of RLS), etc.

And although you say that all you did was post some facts, you fail to see that you posted with belligerence and insult eg. "...I'll post some sort of reference for anyone that doesn't like to use Google." It is incumbent on the person who makes claims out of the ordinary to back them up, plus it makes sense, if you've already done the research, to back them up instead of requiring each of your readers to. And wow, you think googling is research? omg But I digress - that was an insulting comment to make to your readers.

I think you should look very deeply into Susan's post a while back. She has hit the nail on the head for you.

As for whether RLS is an inflammatory disease, every single one of the following references suggests that RLS is not; on that basis I am confident when I tell people, very firmly, that RLS is NOT an inflammatory disease.

Obviously you are entitled to your opinion. But please state it in such a manner that people who read this post will know that it's an opinion based on your experience and what you've read. Not science. (You may recognize some of the words.)

References (real science):
  • Allen, R.P. and Earley, C.J., 2003. Dopamine and iron in the restless legs syndrome. In: S. Chokroverty, W.A. Hening, and A.S. Walters (editors), Sleep and Movement Disorders; Butterworth-Heinemann (Elsevier), Philadelphia, p. 333-340.
  • Chokroverty, S., 2009. Clinical science of restless legs syndrome. In W.A. Hening, R.P. Allen, S. Chokroverty, C.J. Earley (editors), Restless Legs Syndrome; Saunders Elsevier, Philadelphia, p. 15-21
  • Clemens S., Sawchuk, M.A., and Hochman, S., 2005. Reversal of the circadian expression of tyrosine-hydroxylase but not nitric oxide synthase levels in the spinal cord of dopamine D3 receptor knockout mice; Neuroscience, 133 (2), pg. 353-357"
  • Connor, J.R., Wang, X-S., Allen, R.P., Beard, J.L., Wiesinger, J.A., Felt, B.T., and Earley, C.J., 2009. Altered dopaminergic profile in the putamen and substantia nigra in restless leg syndrome; Brain, v.132, n.9, p.2403-2412
  • Earley, C.J., 2003. Restless legs syndrome; The New England Journal of Medicine, Boston, v.348, i.21; p.2103
  • Earley, C.J., 2009. Iron dysregulation in restless legs syndrome. In W.A. Hening, R.P. Allen, S. Chokroverty, C.J. Earley (editors), Restless Legs Syndrome; Saunders Elsevier, Philadelphia, pp.61-68
  • Ferini-Strambi, L. 2009. What causes restless legs syndrome? In: K.R. Chaudhuri, L. Ferini-Strambi, and D. Rye (editors), Restless Legs Syndrome; Oxford Neurology Library, Oxford, p9-20.
  • Freeman, A.H. and Rye, D.B., 2009. The brain's dopamine systems and their relevance to restless legs syndrome. In W.A. Hening, R.P. Allen, S. Chokroverty, C.J. Earley (editors), Restless Legs Syndrome; Saunders Elsevier, Philadelphia, p. 69-77
  • Hening, W.A., Buchfuhrer, M.J., and Lee, H.B., 2008. Clinical Management of Restless Legs Syndrome.; Professional Communications, Inc., New York.
  • Laverdure-Dupont D., Lavigne G., Montplaisir J., and Soja, P., 2009. Is the manifestation of the restless legs syndrome related to a pain mechanism? In W.A. Hening, R.P. Allen, S. Chokroverty, C.J. Earley (editors), Restless Legs Syndrome; Saunders Elsevier, Philadelphia, p.206-218
  • Mathis, J., 2005. Update on restless legs; Swiss Medical Weekly (Schweizer Medizinische Fortbildungszeitschrift) v135, p.687-696
  • Trenkwalder C. and Winkelmann J., 2003. Pathophysiology of the restless legs syndrome. In: S. Chokroverty, W.A. Hening, and A.S. Walters (editors), Sleep and Movement Disorders; Butterworth-Heinemann (Elsevier), Philadelphia, p. 322-332
  • Trenkwalder C. and Earley, C.J., 2009. Neuroimaging in restless legs syndrome. In W.A. Hening, R.P. Allen, S. Chokroverty, C.J. Earley (editors), Restless Legs Syndrome; Saunders Elsevier, Philadelphia, p.78-82

davew
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re: A Natural RLS Remedy that will work for EVERYONE

Postby davew » Sun Apr 11, 2010 3:33 am

"Dave, please help me understand how you know it will work. I'm not saying it won't work, just wanting to understand your thinking about it."

Ann

I go into great detail on my website www.RLcure.com about both my personal history with RLS (where I give an account of how I eventually stumbled upon the remedy) www.rlcure.com/hist.html and then with my Cure Diary www.rlcure.com/diary.html where I give a daily account of my progress in developing this remedy ... the ups and downs ... the mistakes I made ... and the adjustments that helped to get me back on track.

The whole premise of the remedy is based around the idea that inflammation is the main problem. How I found this out was part of my own personal journey. I realize that it's not scientific, but that doesn't make it any less real. The day everything came together, and I realized that inflammation was the cause of RLS ... my life changed dramatically.

From that point on it was all a matter of trial and error as far as lessening the problem.

I would say the first 85% or so of the RLS left in a relatively short time. The last 15% is where I really had to research and experiment in order to break totally free. I admit the last 15% took a long time.

But, as a worse case scenario, who wouldn't want their RLS to be 85% less intense than it currently is?

A point I continually go over on the website is that you don't even have to believe what the cause is. It helps to assist the healing process if you're mind is in tune with the physical healing, but it's not necessary.

What is important is that you try it out. Give it an honest month's worth of effort. No holds barred. There's no hope in sight from anywhere else, so how could it possibly hurt?

If it turns out to be a giant waste of time, then you know in your heart that you've tried another method.

My philosophy is to leave no stone unturned ... especially when you're in pain.

ViewsAskew
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Postby ViewsAskew » Sun Apr 11, 2010 6:00 am

Dave, I wouldn't argue with the no stone unturned.

I am thrilled this worked for you and I don't doubt for a minute it did. Taking a mid-ground here, I'd suggest that you find 10 other RLSer, totally at random, and have them try the same thing. If it works, then find 10 more. When you've hit 100 and it's worked for all, then I'll be the first to say that you're on to something.

I also won't argue that I don't think enough is being done to fund alternate research. But I do think that research, done well, is what we need. It hurts any cause to have poorly done or flawed research. If you are on to something, it will only help all of us if you can find a way to prove your case. Unfortunately, none of us, not even the most broad minded, will believe it from one person's story. That's because as Zach pointed out, we're all so different.

The research, to this point, suggests at least 3-5 different genes are involved in RLS. That means there are likely multiple "types" of RLS. These will also likely not all respond to the same treatment. If your method works for many, it will likely only help a certain portion anyway.

Additionally, RLS is secondary to many problems. There is a possibility that another cause exacerbated your RLS and by doing what you've done, you've cured/helped/eliminated that other cause, so your RLS is gone. Will that apply to all of us? Highly unlikely.

I greatly appreciate your willingness to share the information and I hope that it does provide relief for people. I fear that you will have to help people more than offering it, however, as many of us have tried too many things and just do not have the fortitude to try yet another.
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.

cornelia

Postby cornelia » Sun Apr 11, 2010 12:55 pm

I knew that I had read somewhere that anti-inflammatory medication might help with RLS.
I found the article, only not it's text. It has made me curious what is in it now that this discussio is going on. I suppose it is about secondary RLS?
I think dr Weinstock is a dr that works with IBS patients. Can secondary RLS actually be idiopathic?

Sleep Med. 2010 Apr;11(4):427. Epub 2009 Dec 29.

Antibiotic therapy may improve idiopathic restless legs syndrome: prospective, open-label pilot study of rifaximin, a nonsystemic antibiotic.
Weinstock LB.

Corrie

cornelia

Postby cornelia » Sun Apr 11, 2010 12:59 pm

I am so sorry: this discussion is about anti-inflammation products and not about antibiotics. So.... my last message should be delleted in fact.

Corrie

davew
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re: A Natural RLS Remedy that will work for EVERYONE

Postby davew » Sun Apr 11, 2010 4:59 pm

I'm searching around trying to find some solid medical or scientific proof that inflammation may be the cause of RLS.

Here's something VERY interesting that I found on the NY Times website:
http://health.nytimes.com/health/guides ... tions.html

"Although NSAIDs work well, long-term use can cause stomach problems, such as ulcers and bleeding, and possible heart problems. In April 2005, the Food and Drug Administration asked drug manufacturers of NSAIDs to include a warning label on their product that alerts users of an increased risk for heart-related problems and digestive tract bleeding."

For those of you that don't know, NSAIDs are Nonsteroidal anti-inflammatory drugs.

The key words in the above summary are "they found that NSAIDs worked well."

So, that tells us something. It's a clue. However, the profound side-effects that NSAIDs create eliminate them an option as a remedy for RLS (that's where the herbs come in).

You can find out more details about the possible side-effects of NSAIDs at my website: http://www.rlcure.com/side.html

This is very exciting!

ViewsAskew
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Postby ViewsAskew » Sun Apr 11, 2010 5:35 pm

Wow, I'm not sure where they got the information that NSAIDS work well, but it's the first time I've ever seen that. In all information I've ever read, they do not help as all.

In one study, the author noted, "Thus, prescription of analgesics and NSAID's is not only ineffective in the treatment of RLS symptoms but might worsen RLS."
(Regular intake of analgesics as a risk factor of RLS in patients with affective and anxiety disorders? Sleep Medicine, Volume 6, Issue 1, Pages 91-91 U.Leutgeb)

In a book written by RLS experts, it says that NSAIDS help arthritis and do not help RLS. You can read the excerpt here at Google books.

In my own personal experience, I've never had an NSAID do anything for RLS. I honestly wish I knew where the NYTimes got that citation because it seems to me to be incorrect.
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.

badnights
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Postby badnights » Sun Apr 11, 2010 7:06 pm

In an otherwise excellent article they have that glaringly wrong section on how to deal with mild RLS - by using OTC pain relievers. The rest of the article is excellent. I particularly recommend the section on "Causes" (fine-print links at the bottom) to davew. Now some good samaritan should email them and get them to investigate their source for the mild RLS section, so they can print a correction.

Meantime davew, after you check out the newspaper's Causes section, please download and read the RLS Foundation's medical bulletin written for physicans by physicians and researchers - it's sort of a one-stop-shopping description of RLS and its causes and treatment. The information in the newspaper is very similar, but the one I recommend for you has reliable sources.

I think problems arise because 1/3 of RLSers feel the unbearable sensations as pain whereas the other 2/3 of us don't. Mine are like coursing electrical fields, impending explosions, creeping malevolence, thrumming tension..... but not pain. Whatever they are, they're absolutely un-ignorable, like pain, and also like pain, they're relieved by opiods. However, because some RLS sensations are painful, it can be easy to confuse painful peripheral neurophathies with RLS. As Susan said earlier, if anti-inflammatories help your condition, it wasn't RLS. By definition. (see recommended download).

badnights
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Postby badnights » Sun Apr 11, 2010 7:09 pm

Oh ya, I suspect they put in the bit about NSAIDS because their use might play a role in the differential diagnosis of RLS - ie if they help, you don't have it- but they got sloppy and didn't go so far as to say that.

becat
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Just gotta jump in.

Postby becat » Tue Apr 13, 2010 3:55 am

Hey Dave,
I am truly happy for you, that you are well. Healed, if the word applies. I pray that it never returns. That is honest and from my heart. I think you'd find that most here feel the same way. That you are giving hope to others.
Your first post felt a bit like you were ready to fight us. I can understand, we carry a "circle the wagons" reputation, it's earned. We really do support, talk things out best tempers in check, best as possible. Knowing all the while that there is always a family inside this most amazing board.

So forgive me if I shock you or anyone else.
Coming to this support board, we assume that new people understand that this is an ACTIVE BOARD> we do stuff here! This board has gone a long way to make sure that fighting is not condoned. Debate with respect is honored.

We don't mind having other ideas about treaments here. That is why there is a section for it. Just as you came in with what you wanted to share, there are will normally be an equal reaction.

You do have to know your facts here. Sorry, too many of us are, too use to having to do our own research....Making sure that we have the greatest, broad education in everything about RLS, medications, alternatives, and things that we just might not, have heard tried yet.

The education is our best defense! So, trust me when I say this, not at all in any anger or to be mean. Too many of us, really have done the leg work and reading, searching. We've been awake a long time and we've read, discussed, debated.

We are happy to have success stories, as many here, are not. I say that with pain, cause I care deeply. We need stories from every degree/level/success in this community. Please share your story.
Let's just try a little nicer tone. It's hard to read intent on the computer screen...Trust me there, for real.
Btw the way, if I don't sleep for a couple of days I also don't spell well, either. :)

Now, on to this other stuff.
in that article....from the NYTs? Did you listen to the interviews that went with the interview?

What would you say to them? More intersting to me, what of the lady in the blue shirt?

That would be me. Just wondering.

I made the choice to add medications, for Quality of Life. Had to for my health. 15 minutes of REM, IF I go to sleep, just doesn't make me healthy enough to think well....do much well.
And really after 15 yrs this yrs., on 10, I'm exhausted and something about my body is just injured. I can't get that back. But it is what it is and I'm still going to try to get to "maintain".

LOL Yes, no matter what my mom gets me to try.

Welcome to the board. Glad to have, only sorry it was about RLS.

becat
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Postby becat » Tue Apr 13, 2010 4:04 am

Corrie,
I thought about your ? .....secondary cause idiopathic?
My guess is no. But the secondary may not be able to be turned off or maybe the treatment causing the secondary RLS, cannot be stopped.

See, I'm really hoping, ok almost praying that my genetic RLS is stuck and cannot be progressive. Like I'm stuck.

Like for myself, would my RLS have progressed normally, like the 88% of cases that are manageable...no research just look up all the dopamine research..... Would I be in a different place now, if I had not broke my leg/ ankle at 30? But, that is the time it noramlly shows itself in most.
I've had this pain all of my living memory. so, before 3.
Interesting thought.

Thanks Corrie that was fun to process. Hugs.

cornelia

Postby cornelia » Tue Apr 13, 2010 1:37 pm

Hugs to you too Becat and thanks for your comment. Nice to hear from you again. Hope you are doing not too badly....wishful thinking probably.

Corrie


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