Looking for natural treatments

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.
Timfitzgerald96
Posts: 2
Joined: Fri Jul 14, 2017 12:07 am

Looking for natural treatments

Postby Timfitzgerald96 » Fri Jul 14, 2017 12:56 am

I am a combat veteran with severe lower spine injuries
Which I was told by VA is the cause for my RSL and of course wanted to put me on meds for it. Well! I said no. Before being medically retired they had me on 25 pills a night. Since I ah e gone down to Two, Xartemis ER (pain) Zanaflex ( muscle relaxer)
Does it make my day peachy? Nope but takes enough away that I can function ish! So now I need help. As a beginner in natural therapy's what should I try first?

Rustsmith
Moderator
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Possible cure?

Postby Rustsmith » Fri Jul 14, 2017 2:14 am

The first thing that you need to do is get your ferritin levels checked. Ferritin is a type of iron protein in the blood stream and it is the form that is responsible for transferring iron across the blood brain barrier. This is important because iron is a precursor necessary for the formation of dopamine. And low levels of dopamine are part of the cause of RLS symptoms. If your ferritin levels are below 100 (ask for the number, don't accept that they are normal), then taking an iron supplement such as iron sulfate with vitamin C on an empty stomach can help increase ferritin over a period of a couple of weeks.

A non-med approach that many of us use is either a VERY hot bath or one in very cold water. The thermal difference seems to temporarily switch off the movement urges, but only for a short while. Often just long enough to fall asleep.

Two other "natural" approaches are the use of kratom, an herb from SE Asia that has opioid like characteristics and marijuana. Many of us have found that one or both help with the various symptoms associated with RLS.

Beyond that, you will find lots of info where various people report that various dietary changes have helped. But others find that the same changes have no effect.

So, it is all pretty much trial and error for most of us. You give something a try, if it helps then great. If not, you move on to the next suggestion.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

Timfitzgerald96
Posts: 2
Joined: Fri Jul 14, 2017 12:07 am

Re: Looking for natural treatments

Postby Timfitzgerald96 » Fri Jul 14, 2017 12:08 pm

Is there a place like GNC that sells Kratum? And I will definitely have those levels checked. Thanks so much! This is more then the VA ever told me.

Rustsmith
Moderator
Posts: 2556
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Looking for natural treatments

Postby Rustsmith » Fri Jul 14, 2017 1:08 pm

You will not be able to find kratom at any retail outlet. If is only available online from places such as Velvet Soul.

We have quite a number of discussion threads on kratom with things such as the strains that work best, how much to use, how best to take it and the various vendors that our members recommend. If you use the search function in the upper right hand corner and search for kratom or "red vein borneo" that will take you to these discussions.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

Gaelyl
Posts: 7
Joined: Mon Apr 17, 2017 11:17 pm

Re: Looking for natural treatments

Postby Gaelyl » Tue Jul 18, 2017 3:21 pm

I have found that the biofreeze gel is very soothing. It is OTC or available on Amazon. Especially if I get breakthrough symptoms during the night or a nap a light layer from thighs to ankles totally stops the rls fr a short while (up to maybe 3-4 hours). I recently used it prior to a 4 hour airplane flight where usually I would have definite issues with rls. It is used for muscle soreness, arthritis pain, that type of thing. My physical therapist said they often have people use it prior to therapy to loosen people up so the PT goes easier. Give it a try. As far as I know there are no side effects. It uses menthol and has a very brief odor that immediately goes away (unlike things like Icy Freeze

legsbestill
Posts: 348
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Looking for natural treatments

Postby legsbestill » Tue Jul 18, 2017 10:37 pm

As Steve says, raising iron levels is the single most beneficial step most (but not all) sufferers can take.

You could also get your vitamin D levels checked and vitamin B12 is also sometimes found to be helpful. Many people also get relief (although often temporary) from hot baths with epsom salts. I find lying on my back with my legs propped up against the wall (as straight as possible) can be helpful during an attack. Also stretching out the legs and using a yoga routine. There are endless suggestions of supplements but only limited anecdotal evidence of success with them.

Make sure you are not inadvertently exacerbating your symptoms with for example anti-histamines or otc anti nausea drugs or indigestion treatments. Also be sure to avoid alcohol in the evenings as well as heavy meals, coffee, chocolate, ice-cream (anything you might notice normal people enjoying really). Moderate exercise can be helpful.

There are plenty of enthusiastic suggestions for various restrictive diets including but not limited to Wahls, Fodmap, Low oxalic, low chem, low sulfar, ketogenic etc etc. Certainly a plain simple dietary regime with slightly fewer than excessive daily calories seems to be more acceptable to the legs. Then there are individual suggestions such as (but again by no means limited to): cold potatoes, marmite (google it), rooiboos tea, apple cider vinegar and of course the irrepressible soap-in-the-bed. There is sadly a lot of snake oil out there too.

Good luck.

Yankiwi
Posts: 258
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: Looking for natural treatments

Postby Yankiwi » Wed Jul 19, 2017 8:43 am

This describes a typical night for me. I can usually get to sleep within a few minutes of going to bed around 10:00pm.
Round One—a few hours after falling asleep the first time
I find rubbing ordinary hand lotion on the backs of my calves in the middle of the night helps. I rub vigorously, the combination of rubbing and hand lotion usually allows me to get back to sleep after reading for a half hour or so. I am going to order biofreeze gel and a magnesium cream which might work a little better than just the hand lotion or maybe not.
When I read in the middle of the night I like using my iPad with the night setting and no other lights, that seems soothing. If I'm lucky I can sit up in bed and when ready just close the iPad and go to sleep. If I'm not lucky I need to read standing up while stretching for up to an hour.
Round Two—after a few more hours of sleep—more reading but no lotion
Round Three_an hour or two before getting up
Standing yoga stretches and downward dogs for about 6–7 minutes usually lets me get back to sleep for a few hours

Most night follow this pattern. I'm pleased when I get three hours of sleep in a row.

Polar Bear
Moderator
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Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Looking for natural treatments

Postby Polar Bear » Wed Jul 19, 2017 4:27 pm

Yankiwi - your routine is not so different from mine. Although I do go to bed later.
In the past I believe I have given the biofreeze spray a go, probably just a time or two in desperation. It might be worth another try using the gel.
In the middle of the night I use my kindle but not sitting up... lying down on my side with the kindle propped on a pillow and I drift off.
I seem to operate on 2 hour sleep bursts with about 90 minute 'intermissions' up out of bed.
It is a very rare night that I'd manage 3 hours sleep in a row.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Yankiwi
Posts: 258
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: Looking for natural treatments

Postby Yankiwi » Thu Jul 20, 2017 5:35 am

Hi Polar Bear,
I do sleep better when I go to bed later but usually just can't stay up. I don't hold out much hope for the biofreeze gel but will try anything outside of an out and out hoax and my hoax meter is very strong. Last night was a miracle. I only got up around one for a half hour and 4.30 then slept until 8.30. Usually it's three times up.

Yankiwi
Posts: 258
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: Looking for natural treatments

Postby Yankiwi » Thu Jul 20, 2017 5:42 am

Doesn't having RLS seem like Groundhog Day every night? Every bed time I hope for a better night and sure enough, almost like clockwork, I wake up and have to go through the same series of activities just to be able to get back to sleep. And I know I'm lucky that I can.

Polar Bear
Moderator
Posts: 6810
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Looking for natural treatments

Postby Polar Bear » Thu Jul 20, 2017 9:39 am

Groundhog Day is a pretty good description.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
Moderator
Posts: 14783
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Looking for natural treatments

Postby ViewsAskew » Thu Jul 20, 2017 8:42 pm

Yankiwi wrote:Doesn't having RLS seem like Groundhog Day every night? Every bed time I hope for a better night and sure enough, almost like clockwork, I wake up and have to go through the same series of activities just to be able to get back to sleep. And I know I'm lucky that I can.


Indeed!
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.

sleepdancer2
Posts: 158
Joined: Sun Jun 29, 2014 7:46 am

Re: Looking for natural treatments

Postby sleepdancer2 » Fri Jul 21, 2017 8:20 am

Agree with the suggestions above. Sometimes a little bit of help from each of multiple sources can have enough of a compiled effect to give some relief. I take a few supplements (after testing by my doctor), including a calcium/magnesium/zinc combo with vitamin D as well as iron. Because I made so many changes at once I couldn't say which has made a difference. The other piece of my "natural" treatment is I use a TENS Unit on my lower back before bedtime. I don't think it would be very effective for one experiencing augmentation or having RLS/PLMD as a side effect to a medication. I say that because the TENS didn't help me much until I was pretty far removed from augmentation and problematic meds. But between supplements and the TENS, my sleep is usually decent, though that is a relative term. Decent in comparison to my worst, not my best sleep. But I'll take what I can get. Still wake several times a night, but have about 3 solid chunks of fabulous sleep each night that total 7-8 hours.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

veldon75
Posts: 43
Joined: Sun Sep 21, 2014 3:45 pm

N Acetylcystine and L Tyrosine

Postby veldon75 » Tue Jul 25, 2017 8:30 am

Hi: I haven't been on this site for a year, Unfortunately, I'm still on Mirapex, my legs are getting worse, have augmentation, but nothing else works. I started going to a Functional Med. DR. she did a lot of Lab tests and found out I have very high levels of MTBE, it is a gasoline additive found in ground water, from inhaling or getting gas on your skin, or exhaust fume. She gave me N acytylcystine and L Tyrosine, and Cordiceps mushroom supplements. She said this toxicity will cause fatigue, I wonder if this Toxcity has caused brain problems I read it causes Neurotransmitter problems. So tired of living with RLS, I've had it for 20 yrs it makes me so depressed and frustrated every time I drink alcohol my legs immediately go crazy, and need to give up coffee but need it because of fatigue :mrgreen:

Yankiwi
Posts: 258
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: Looking for natural treatments

Postby Yankiwi » Tue Jul 25, 2017 11:31 pm

I am a natural skeptic but I wouldn't go near functional medicine. Look it up on line in scienc -based websites. FM stresses individuality but humans are more alike than different. I much prefer science-based medicine based on clinical trials, not lots and lots of lab tests which come up with incredible diagnoses and treatments.
I prefer to add an "s" to “complementary and alternative medicine” (CAM) making it "so-called complementary and alternative medicine” (SCAM).
I'm sorry if I sound harsh, I know that RLS sufferers tend to grasp at anything. I, myself, just ordered magnesium cream which I don't really believe will work but I put my faith in science-based, clinically-tested medicine.
Best wishes and good luck but I think you will have better results with a physician who understands RLS.


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