My approach to RLS is non-medical. There is a lot one can do to minimize the problems of RLS. So that is where I come from. And I have been quite successful. I know it will always be there and not actually go away, but managing it in a healthful way has been, for me, most rewarding and not so difficult to do.
I don't let RLS take over my life! - Restless Legs Syn...
I don't let RLS take over my life!
Written by
lauraflora
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92 Replies
•
You want to elaborate on the 'non-medical' methods you've employed and enjoyed?
Sounds wonderful. Diet? Supplements? Would love to know the secret.
That's great to hear - how are you doing it?
We should all be sharing what we do to improve our lives.........one of the main reasons for a forum is to share and help/support each other.
Rls cant just go away your brain controls it and yes a healthy diet might help but you dont control it it controls you and people with rls do have to have medication you cant do without it .
I am really struggling to think that a healthy an
Iv`e been reading about supplements & RLS, & apparently, a lot of RLS sufferers are deficient in vitamin d. I`m taking a vitamin d3 supplement at the moment, & I`m hoping that this works.
I don't want to burst your bubble but my vitamin d levels are perfect and so are my ferritin levels. It goes way deeper than that...
Keep up that good work and keep us posted.
I am taking Vit D3, Gentle Iron, calcium and magnesium, Iodine and a variety of the B vitamins - I still require the Neupro patch AND Targinact and I was awake and tossing til 5am this morning. I have a Gluten and Dairy free diet, (although been very lax on that front this past few weeks). I take hot baths and showers use visualisation and have used Binaural Beats.
If you know something I can do I that I am not already doing I am all ears!
Whitebuffalo• in reply to
You have ME right? I really don't know much about that condition but I would be willing to bet dollars to donuts that even less iron is getting to your brain than the RLS sufferer who does not have such a condition. I see one post of yours that indicates that your RLS has improved greatly and another post in which you attribute some of that improvement to Gentle iron.
• in reply toWhitebuffalo
Yeah, I know it if I miss it! It has been a great addition to the arsenal.
I had been prescribed iron in the past but can't remember when or why but I know it was at least twice. I've no idea what the RLS was like then, ( crap memory since getting ME).
• in reply to
Me too. Would love to avoid as many rx drugs as possible. Don't trust the pharmaceutical industry very much. About 20 years ago when I was still working as an RN, our hospital took part in a double blind drug study. We were never told any info re the drug we were helping to collect data on which is usually the procedure. But I remember being appalled at the sloppiness with which some of the data was collected and reported. AREAL eye-opener!!!!!
Giancarlo96• in reply to
Might be old, but it works for me, and apparently the state of Florida does too. Which is cannabis, in different types, I know everyone is different, but it’s the only thing hint that works. I’m 21 and I do not want Valium (ropinirole and gapanetin made it worse)
I'm with you Raffs. I follow strict paleo diet, no gluten, grains, dairy, sugar, salt, alcohol, caffeine. I've been on high vit d3 for years, take iron, folic acid, iodine, taurine, Theanine, quercetin, bromelain, b complex, and I still have RLS. Aaagh what else do I have to give up/add to make any difference? Even on pro biotics in hope it will help mineral and vitamin absorption. Oh and I have Epsom salts hot baths and do Neuro brain exercises recommended by my MS nurse.
I give up, what's the missing link?
Jools
Hi Joolsg. Boy, you sound just like me with the vitamins and healthy diet although mine is not Paleo. I haven't tried the Epsom salts nor the Neuro brain exercises but I can say that when one has a disease as we do, "mind over matter" isn't going to cut it! Therefore, I have a hard time digesting what lauraflora said previously, that she controls her RLS, it does not control her. Hmm...
You're augmenting, right? If and when your dopamine receptors return to baseline then Ms. Flora's protocol, including ferrous bisglycinate (taken at night) just might be your ticket. Are you on anti-depressants or heart or allergy or heartburn medications or metformin. The more I read the more I realize that just about any drug and any health condition, including benign ones like pregnancy and allergies, can give a person irretractable RLS.
Your take on lauraflora's comment is very interesting Whitebuffalo and I will certainly consider it. Yes, I am augmenting making matters worse and I am not on any medication but ropinirole and OTC daily vitamins.
P.S. What do you mean when you say pregnancy is a benign health condition? Did I read that incorrectly? Somehow I lost the meaning of what you were trying to say.
Pregnancy which I recently read can trigger RLS (and it certainly seemed to with my sister) is not a disease like multiple sclerosis. It's just a temporary condition. Really strange things make my RLS worse and better. The last two weeks I have not needed to take the ferrous bisglycinate every night because I have not had RLS every night. This might be due to the fact that I have stopped taking melatonin and/or the two tablespoons of apple cider vinegar I've been taking for another conditions. This last week or so I've been up late at night watching news about the elections. I will have no RLS but then I get hungry around midnight. So the last three or four times I indulged my hunger I get RLS within about 15 minutes of eating. I think humans are meant to eat most of their food before sunset. I think my late night eating *which was light) is causing a disruption in my barely functioning night time dopamine transport. As long as I don't take melatonin and don't eat late it seems I'm fine...no RLS. And even when the RLS kicked in I simply took one iron tablet and fell asleep.
Wow, great response. Thank you so much. I too have heard on many occasions that pregnancy makes RLS worse and you are right, pregnancy is not a disease, but then again I've never been pregnant so who knows? 
Your night times seem similar yet different from mine. I am up all hours of the night watching 30-minute sitcom repeats and of course, I am eating something at that time too. Food has no effect on my RLS however but after reading your post, I am going to start taking my daily iron at night along with my ropinirole in hopes of a better night's sleep. Unlike you unfortunately, I can't remember the decade where I didn't have RLS every day of my life. It has simply become worse of late in that the onset is earlier in the day, that horrible feeling lasts a lot longer after I have taken my ropinirole...maybe 45-60 minutes when it used to take 15. Once the ropinirole does kick in, I am fine. I may still be awake and possibly snacking on something, but it's not because my RLS won't let me sleep. Thanks again for your post.
Your response begs another question. Are you male or female (I think females get more of the brunt) and do you suffer from any disease or condition? Conditions meaning like allergies and dermatitis and obesity. I'm obese. Gotta work on that. Diseases meaning like hypothyroidism, diabetes,
Hi there. I am a female and yes, I have seasonal allergies. Here in the USA it is Fall and living on the East Coast, the leaves are quickly changing colors and falling from the trees. This makes my allergies crazy. Other than that, I am healthy (not accounting for the RLS thing.)
What is it about allergies and RLS??? I have allergies to a lot of things. That's really my only condition other than moderately elevated blood pressure and enlarged prostate. I don't know that many people with RLS but the few I do know and from what I have read on other forums allergies are common among RLS sufferers. What's even more interesting to me is the fact that in most instances, like us, that's about it in terms of health issues for them. Either that or obesity like myself. Maybe all that histamine swirling around our bodies interferes with something. Antihistamines aren't the answer I know. Well, for another day.
What would really solidify this theory is if Elisse has allergies because like us she really has no health issues or medicines that she takes.
Good thought. Certainly doesn't hurt to ask.
Someone on here already answered our histamine question. I couldn't open the link but it does sound like histamine inhibits the release of dopamine. My coal mine just became darker and dirtier than I ever thought possible. On the bright side, I think I will try natural antihistamines as recommended. Now I am NOT telling everyone to take natural anti-histamines or that natural anti-histamines will help RLS especially if you don't have allergies but I am giving it a go. I actually might already have been taking a natural antihistamine if apple cider vinegar is one.
What are the "natural" antihistamines? I'm curious. It's almost as if we are doomed or maybe bound to have one thing or another. We can either not breathe and be miserable but not have RLS or we can have RLS and breathe through at least one nostril. As the canary flies deeper into the coal mine...
Too funny. Doomed is a strong word, especially for someone who has such a good sense of humor and take on life. More like a soap opera don't you think.
The person who posted a link showing that histamine reduces dopamine release suggested vitamin c. I've been taking apple cider vinegar for the old prostate but if I am to believe 1000s of articles and posts on the internet then the apple cider vinegar is the champion histamine fighter. But it sounds like it takes time and taking it everyday regardless of symptoms might be important. If you look back at my older posts you will see that I felt like the apple cider vinegar was helping my RLS and that was after I had been taking it for about two to three weeks. I stated right away that no one should try it because it all seemed so silly. Still, I put it in the search box the other week and sure enough there were few people who swear by a nightly swig of apple cider vinegar, either alone or in combination with other things like molasses. I would love to know if they have allergies.
As the canary flies into the darkness it really lights up the coal mine don't you think? Things are starting to make sense in terms of my conditions and why things have worked or not. I too have had RLS for as long as I can remember but not everyday and I always eventually fall asleep. Then like you there would be times of quiet. Maybe that's when the histamine in my body was at a low level? But like you said we have to continue to breathe and blink and eat and I'm not about to undertake an elimination diet. I will continue with the apple cider vinegar however and think about a vitamin c supplement.
I know the word 'doomed' sounded a bit harsh so I felt compelled to throw in the word 'bound' to lighten the load a bit. It's funny that you should mention RLS and apple cider vinegar in that I was just reading an article about their relationship and readers' reviews on WebMD. Everybody had his/her own opinion and/or reaction to it but it appeared as if the majority of folks did not find apple cider vinegar to help relieve the symptoms of RLS. Go figure!
yeah, no way could it ever be what I call a standard RLS treatment like say Gabapentin or iron that works on the RLS and the transport of dopamine directly.
BUT what if you're a person who has a lot of histamine floating around because of allergies? And as we know the RLS canary is ever so sensitive. Maybe, just maybe, taking something that lowers histamine, day in day out, might just help people who have RLS and allergies. It goes back to our own personal coal mines. Will spinal manipulation ever become a "standard" rls treatment. Doubtful. But if your coal mine includes a bad back I would go for it.
Quercetin is a natural substance (from apples and onions, I think) that is a good anti-histamine. For allergies as well as excess histamine, and I read also for histamine that irritates RLS.
Quercetin, which is made from, I thin, apples and onions, is a good anti-histamine. It is sold with or without vitamin C. Good for allergies, excess histamine, and, I read, the histamine/RLS issue.
• in reply toWhitebuffalo
Can anyone taking ferrous bisglycinate share dosages with me? Just read post about it and would like to try it. Am trying to raise my ferritin level by eating liver -which I hate. I was offered iron tabs but so many of them have horrible gastrointestinal side effects which I don't want to add to my list of medical 'situations.' Thanks in advance. burmag
Joolsg• in reply to
28mg per night on empty stomach ,but take every other night or 40mg ferrous bisglycinate patch. Patch MD sell them on Amazon.
LotteM• in reply to
20mg every other evening (Mon,Wed, Fri). With vit C tablets (c 260mg) instead of OJ.
I get them - as well as Mg bisglycinate - from Bulkpowders. They have an English site as well (I am in NL). Just checked. 8£ for 90, cheaper in larger quantities etc.
Ferritin levels were just below 50 when I started; 3 mo later above 50, 6 mo later above 100. That was 4-5 mo ago. Need to have my levels checked again; would like to keep them above 100.
No gastrointestinal problems. But had them as a child; often on iron'drink' as a kid.
• in reply toLotteM
LotteM, VERY helpful info, am going to begin the bisglycinate. I can order it from several companies. Plan to order next week. Already taking Vit C which I understand helps iron absorption. My starting Ferritin was 60, and will have labs repeated in the next couple of weeks. I hope I get as good result. 100 would be wonderful and I could probably stop eating liver. UGH! Let me know your new ferritin level, To go from 50-100 in a few months with no G.I. symptoms would make me happy. Do you think it is having a positive effect on your rls? I hope so.
In my humble opinion there is no missing link. If you have the type of MS that presents with lesions on the spine then standard and "alternative" drugs may not provide you with complete relief. However, someone else with RLS, who follows your magnificent protocol of enzymes, minerals and iron may very well get complete relief. Newbies on this site should not be dissuaded from trying your protocol that you have obviously worked long and hard on and are worth a good try by a newbie.
I have many lesions on my lower spinal column and realise that my efforts may come to nought BUT at least I feel as though I'm trying to control RLS rather than have it control me.
I am not augmenting- I came off dopamine agonists over a 3 month period ending in mid August. with the help of people on this site, particularly Elisse and Pipps, or was that comment directed at lbf2016?
Thanks for the feedback,
Jools
Are you taking the ferrous bisglycinate on an empty stomach, before bed and NOT with any other supplements? When I took the iron in the morning it did NOTHING for my RLS. When I took it right after dinner I found I needed to take two to get rid of RLS.
I take 100mg over the course of the night ( starting at 11pm) as I wake up ( MS causes frequent loo breaks) so my stomach isn't empty ( I eat dinner at 7pm so that's still in there) and I don't take other supplements at night ( I take them mid afternoon)
Someone on here said you can't take a form of iron called ferrous sulfate. It has to be ferrous bisglycinate. What form are you taking? Interesting though it sounds like you fall asleep at a decent hour and are able to fall back to sleep. Can you eat dinner earlier and take 50mg of the ferrous bisglycinate only once - right before bedtime?
i just said above that I take ferrous bisglycinate. I didn't say I fall asleep at a decent hour or that I am able to fall back to sleep. If that were the case, problem solved!
So, is that the cure for RLS? Eat dinner by 6pm every night and take just 5omg of ferrous?
I really don't think that's the solution, but, tell you what- for the next week, I'll eat dinner by 6pm. take just 50mg before bed and see if I get any more than 4/5 hours sleep over a 12 hour period. I could then cancel my subscription to Amazon and Netflix. I'll report back,
In anticipation,
Jools
No, go the other way. Eat late and STOP all iron for one week. If your RLS stays exactly the same then at least you can stop the iron (and save money that bisglycinate is expensive) and you can have something to do (eat) while watching Netflix late at night 
I never eat between meals whitebuffalo so no night feeds for me
Jools, that's a riot! Cancelling your subscriptions to Amazon & Netflix...
• in reply toJoolsg
I'm going to give your routine of earlydinnerand 50mg bisglycinate atry. It couldn't and I'm willing to try anything to stop eating liver. I've only eaten it for 2 weeks and already I dread Mondays. (That's cook liver day for me.)
• in reply toJoolsg
Hi Jools, Would love to find out what probiotics you're on. I'm trying to find a starting point on this to improve my gut health. Open to any and all info. Thanks.
Joolsg• in reply to
I take VSL but they are very expensive and are delivered refrigerated. I don't even know if you can get them in the USA. Another excellent probiotic is Symprove but ,again, I don't know if you can buy them in the USA.
a recent TV programme here in UK found that a daily serving of sauerkraut increases healthy gut bacteria by 300% so I've bought some of that as well. It's cheap and lasts for ages.
Good luck
Jools
• in reply toJoolsg
Hi Jools, Thanks for responding. VSL is available in the States but, you're right, it's very expensive. So I looked up pre and probiotic foods. And you're right sauerkraut is great. It's a food I often buy, but I learned something today. Better to buy the raw sauerkraut- in the refrigerated section- instead of the more common pasteurized. Also, on one of my 'go to" websites ( wellnessmama.com) there is a fairly easy way to make homemade sauerkraut. This is something on my healthy 'bucket list' to try. In the US there are many healthy foods that are not so healthy anymore once big food companies start packaging them, adding unhealthy ingredients to help sales/marketing so it's wise to do research before buying to get the good stuff and avoid the more processed choices. I didn't know about a daily serving boosting good bacteria by 300%. Will start eating it more often. Thanks, again.
lauraflora, that is wonderful! When were you diagnosed with RLS? Is it light, moderate or severe? Why did you decide to take a non-medical approach to deal with it, and since you have chosen to share this revelation with this group, would you care to share details of your approach? It could possibly help thousands of people who are slaves to drugs as their approach. To find an easy, healthful and rewarding way would be a lifesaver to so many people. Thank you!
Yes, please expand.
Well that was a lot of nothing ,I havnt learnt a thing if anyone has maybe you let me know
Are you taking any heart medications? Or medications for dizziness?
Well after reading what raffs and Jools have tried i dont think anything is left to try....is there..!!??
Would be lovely if it was that easy to take this or that, or not take this or that and BINGO.!! We all have found the magic potion.
Izzybelle22• in reply to
Elisse, you crack me up! You witty sarcasm is awesome
• in reply to
Not cool!
I wish I could say the same.although it is a case of different strokes for different folks, I have been trying for 70plus years and it is very comforting to read someone has achieved some form of abatement of the condition.
Ms. Flora I see the wolves are at your door and thus scaring off the dozens, if not hundreds, that can benefit from your advice. Allow me to add to your post. I've come to realize that RLS is like the canary in the coal mine. Very sensitive and the first to react to a bad situation or substance. A canary is a canary and RLS is RLS, but the only way us, or that bird, are going to be able to maintain some semblance of a life is AWARENESS and VIGILANCE. For a majority of RLS sufferers, per Johns Hopkins and several scientific articles, a good treatment is to get a stream of iron going to our brains which are iron deficient and/or can't store iron, known as improper brain iron management. Supposedly people with primary RLS have had this iron management problem their whole life and a result our iron dependent dopamine transport system is quite awful. That dopamine is what relaxes our legs not only at night but during the day. It's just that at night our blood iron levels drop thus making RLS more likely. So that is what RLS is. DONE, no question there.
Now we ALL have to look at our coal mines. My coal mine is different from yours and I can almost guarantee you that everyone who has found that iron does not help them have such a devastatingly bad coal mine that almost no amount of iron or dopamine agonists are going to provide complete relief. I clicked on people's names below and I see some with MS, or CFS/ME, or some taking statins, anti-depressants and some with augmentation - meaning their dopamine receptors have shriveled up to near nothing. These people need to man up and say I'm the exception to the rule. My coal mine is so filled with pollution that I cannot judge the validity of standard RLS treatments such as GABA and iron. So with you Ms. Flora your coal mine included poor spinal health which as we know does not cause RLS but RLS is so "delicate" a condition that any additional interruption in the transmission of dopamine through our central nervous system is going to make RLS that much worse. Figuring out a way to improve that condition, combined with iron and magnesium and calcium brought your level 15 RLS to a 0 or 1 or 2. A couple of years ago when I took a calcium channel blocker I ended up with bad all day RLS. Had I not made the connection but instead listened to you and tried spinal adjustment and iron then I too might be telling you that you don't know what you're talking about. But you and DicCarlson and RLSGILLS and Johns Hopkins do know what you're talking about and you do have the answer. The people who don't know what they're talking about are those who are on heart medications or have MS or CFS or are consuming RLS triggers and prefer to criticize you rather than doing some coal mine cleaning or admitting that they are too far gone to be treated by the substances that WILL help the majority of RLS sufferers.
• in reply toWhitebuffalo
I cant speak for the rest who left comments, but i dont have MS or CFS dont take any meds cept RLS MEDS. so, no anti-d's no heart meds etc etc. and i am not augmenting and i have no triggers, oh wait maybe alcohol, but i dont drink that any more either. 
So what does that make my coal mine. ?
Whitebuffalo• in reply to
Your coal mine is an older one as is mine. Old receptors = a worsening of RLS. Your RLS became intolerable later in life per your posts? And it seems that for the most part the RLS drugs work for you. End of story. Your coal mine is fine, the problem is RLS. Yours is a mild case as is mine by strict medical definition. However, in addition to age, your long standing use of dopamine agonists worsened your receptors even more. Thus you are a poor judge of "alternative" treatments. I would suggest allowing your receptors to return to baseline and try the ferrous bisglycinate again. Remember, YOU asked me for my opinion as to your coal mine. Even Johns Hopkins indicated that people who get iron infusions and throw away the agonists go much longer between infusions. My guess is that your receptors at the present time are so pathetic one 25mg tablet of iron at night will not provide complete relief. However, someone younger, and who has never taken and the agonists as you have will likely get complete relief from one 25 mg tablet as does DicCarlson, RLSGILLS, myself, Lauraflora.
• in reply toWhitebuffalo
Well thanks for the diagnoses, even tho its not correct.
Whitebuffalo• in reply to
What part is wrong? Are you under 50? Did you not take the agonists? Your explanation can help people so please tell me where I am "not correct."
• in reply toWhitebuffalo
Well i dont have a LONG standing use of taking DA's. Depending on what you consider long standing. I mean i have not taken them for years and years.
I tried iron pills when i wasnt on any medication didnt help.
I have a healthy ferritin level right now so taking any more iron would not be a good idea. I consider my RLS as severe. If i didn take any meds to give me relief i would be a nut case. I went 14 months with no meds and i certainly would not go down that road again, unless i wanted to end up suicidal (just to add i have never got the that point and dont want to either) I have tried "alternative" treatments. So, as you dont know ALL about me and my RLS then your diagnoses is way off. Oh and iron infusions do not work for everyone. Not that i have had one as they are not done here in the UK.
Whitebuffalo• in reply to
Getting old stinks. Wish they would find a treatment for that! Those Agonists start to shrink the receptors with the very first one.
• in reply toWhitebuffalo
I guess all those on here who have taken that first agonist are doomed then. So, no point in saying any more.
If getting old is as bad as everyone says, then why doesn`t everyone over 60 commit suicide?
• in reply tohairyfairy
I dont think can even reply to your comment. 
Well, thank you for this, Whitebuffalo. You really back me up in more specific detail on these things. And you have added a lot more that I hope people will at least consider. Yes, some of us have been helped by these non-med treatments and that means that some others can also - if they knew about them (which was my point in listing them.) Not everyone, just as not everyone wishes to go down this route. But some of us do, and others who are new to the site should at least know that there are different choices available to try. Drugs need not be the first or only answer!
Especially since one only has to scroll thru these posts to read how many people have had bad side effects or find the drugs don't help after awhile. Not everyone, but enough people that it is only fair and reasonable to list both kinds of possible treatments, for new people to peruse and try.
What you said about improper brain iron management - other people have a problem with storing too much iron. Some people have high requirements for, or problems with using, other nutrients - vitamin c, E, etc. Adele Davis brought this up in her books, back in the '50's and '60's. So for people with RLS, it is a problem with iron. (At least one of the problems.)
I received about 72 replies/queries, etc. to my post. I was stunned! I don't even know if the new person I wrote it to replied or asked me any questions. Thank you for watching my back and keeping those wolves at bay! And pitching in with more of your well researched info. What you say about the dopamine travelling thru the central nervous system, which means the spine, just helps reinforce what I have been saying about good spinal alignment.
So, thanks again, Whitebuffalo, and keep up the good work!
have not noticed wolves circling the camp fire yet.
With a letter like that they will be at his heels ,I can't be bothered to reply
Well, this whole thread has had me laughing out loud. Clearly White Buffalo you have some valid points BUT all we wanted to know was what Flora actually does/recommends.She failed to mention it at all in this post, unless you are a mind reader???
No one criticised what she was recommending because she didn't tell us what she does to keep RLS under control. Seems you have been overprotective and there are no wolves circling, simply people keen to gain an insight into what has worked for Flora.
But, at least it has kept me chuckling,
jools
You caught me, I am guilty of having read Laura's other posts in which she spells out her protocol. You can read her other posts as well. I'm sure she will love it! You didn't tell me what form of iron you take?
I did, see other reply.
Yep, thats what people were asking for an explanation.
My coal mine was shut down by Thatcher and despite flying pickets and help from my brother miners I have no coal, thankfully I live in Ireland and we have plenty of turf so at least I can still keep warm
"went 14 months with no meds and i certainly would not go down that road again, unless i wanted to end up suicidal (just to add i have never got the that point and dont want to either" I have been there and life without drugs was not life but hell.
I have suffered from infancy and have spent a small fortune on supplements, pills, potions and powders. I have altered diet going from a vegetarian one to vegan to meat eating to Paelo. I've removed as many excitotoxins as I can understand about. Steaming hot baths cannabis and Kratom have all given some temporary relief.
I'm even trying to look into epigenetics and using sound/thought to deactivate genes! I've prayed gone to healers tried Reiki and a variety of other energy/alternative treatments - AND I STILL HAVE SEVERE RLS.
At the moment high doses of opiates and a DA are the only thing that keeps me from taking a long walk off a short pier! And even then I still need other substances to help too.
STILL waiting for lauraflora to enlighten with her approach. It seems very strange to drop in a comment like the OP with no follow up info
lauraflora• in reply to
Sorry, I got extremely busy with other things and could not spend the time. I do have a life beyond this website. However, I never called myself an expert on RLS, only what I have found helps me, and what I saw others on this website say was helpful to them. I was just trying to consolidate it for anyone, especially new, who might like to give something a try, without having to search for they- wouldn't- even- know- what, on the site.
However, I don't know anyway if my list will appear anywhere in total for anyone to refer to. It seems that a lot of people misunderstood what I was trying to do - and I probably wrote too enthusiastically perhaps. I was actually making suggestions, not saying these things would work for everyone absolutely. It just shows how desperate people with RLS can be, which I understand myself.
Also, I am not trying to knock people who need to take drugs. However, most people would agree that if one could use something else, besides a drug at first, that actually helped, that would be better than starting out with a drug. If it did not help, then proceed to a drug. Some of us tho, myself included, have not used drugs but have found other things that work for us.
I am sorry you have such a problem with RLS. I have no answers for what you still experience even tho you have tried so many things. I have no more suggestions either. Tho you would probably agree that just because something did not work for you, it does not mean that it might not work for someone else. (And vice versa.) Which is why I thought the info should be put out there for people to read, at the least, try and judge for themselves.
So, there it is. I got about 72 replies to my post. I cannot even read them all. So I am only answering a few, here and there. Good luck to you!
Coal mines and Canarys???
hi pippins welcome back hope your mom has got over her illness !!! whats behind your post?????
Hi Stan unfortunately my mum has dementia so the problems won't go away only get worse .To understand my comment you need to read all the comments above x
• in reply toPippins2
With Coal mines you might get Iron down there. My kids mine for coal and Iron in the same caves in Minecraft.
The Canaries as everyone knows are a group of islands off the West Coast of Africa famed for their glorious sunny weather and obviously represents the need for vitamin D.
• in reply to
The Canary that is being referred to is a bird. They used to send Canaries down the mines to see if any gas was being omitted. If the canaries flew back out, they knew it was safe to go down the mines.
• in reply to
I know I was just messing The canaries were actually kept in cages with the miners as they were more susceptible to the gases they died before the miners so were an early warning system.
Mind you I still don't know how they refer to the thread!
• in reply to
I did wonder if you were messing or not. Something to do with bad coal mines, and RLS. ? You need to sort out your bad coal mine.. ? This has been a weird thread for sure. lol
• in reply to
It is that! Once the mines were mentioned I couldn't help myself
My goodness! I did not realize my post would elicit such a huge response. Perhaps I am sticking my neck out a bit much, BUT - I want everyone to know that I do not have a miracle cure for each and everyone of you. What I intended was to CONSOLIDATE the info I have seen on here, from others as well as myself, of non-medical things - supplements, exercises, structural care - that I and others on here have found useful. (There is plenty of info on the various drugs people use, it seems.) AND, I am not in any way an expert on RLS - but I know a lot about my own RLS.
Otherwise this info is all scattered thru all the posts, and especially new people (who often sound desperate) will not know how to find things. They may come across one or two - otherwise it is rather random. I did not list these things in my original post for 2 reasons - 1. perhaps the person I replied to was not interested in this approach, and 2. because I will have to spend some time going back thru posts in order to list these things.
Even now, since I have to go to work in awhile, I do not have time to do that. So it will have to wait. Once again, I only intend to list things/info that have been helpful to me, and things that other people have posted on here that have been helpful to them. Then people can look into the info and decide for themselves. So, settle down!
And if anyone has any non-med suggestions/info you can add them as well. Again, I meant to just get this info together in more or less one spot.
What has worked for you?
Ok, I can't read everyone's replies. But for the sake of consolidation of the info on here - non-medical - which I and some others have already put on here - for the sake of having it in one spot - here it is:
Iron bisglycinate seems to be the hands-down best iron from what others and myself have posted. It is non-constipating and easy on the stomach. RLS sufferers have been shown to be lacking iron, which helps your body supply oxygen to all of your parts. If you are lacking iron, it sends it first to your organs. That means the nerves to your extremities do not get any and become restless and irritated.
Calcium - use capsules not tablets which are hard to digest. Calcium citrate is a good one. Helps the nerves calm down.
Magnesium - helps those nerves as well as the muscles be calm. Some people have found magnesium oil or crème to help. Some not.
Apple cider vinegar - taken internally or rubbed on the affected part. Some people have found this very helpful. Use a real ACV, such as Bragg's. with the 'mother' not a commercial type.
Yoga and stretching exercises to help keep the spine and muscles loose. This reinforces Chiropractic treatment for RLS, which eliminates any pinched nerves or otherwise compromised nerves, by the spine being out of alignment. One thing to note about chiropractors - many of them treat for RLS, some not specifically. BUT keep in mind that every time you have your spine adjusted they do the whole thing; they do not do just part of it. So even if they are not specifically treating for RLS, they do put the whole spine back in alignment. SO my feeling is this is better than no treatment at all.
Your spine, tho , is not the cause of RLS. There is an internal component to RLS, an imbalance. However, if your spine is out of alignment and pressing on or irritating those nerves - it makes the whole thing worse. I know this from my own experience, several times over. It makes an additional irritation on the nerves. If you remove that, then the RLS is better and can be treated more easily. Also the messengers that are suppose do travel down your spine-be they hormones, etc., cannot do that properly if there is a kink in the spine.
This is where stretching exercises and yoga help to reinforce keeping the spine in good alignment. I do a mix of yoga and Miranda Esmonde-White's Essentrics.
Lastly -a great book that has explanations of the interplay between hormones such as cortisol, progesterone, estrogen, etc., and dopamine, serotonin and GABA, and how that is all thrown out of balance if the hormones are unbalanced, is by Dr. Sara Gottfried - The Hormone Cure. It is very worth reading for eps. women with RLS and insomnia/sleep issues. That is not the focus of the book - it covers a wide range of problems, but these things are most definitely brought up and addressed. Esp. sleep problems, which are endemic. So check it out! I found it most helpful in addressing my own sleep problems even after getting my RLS under control. You have to see what your own imbalances are, as they change with age, esp.
As you can see, this is a lot of info. I am not trying to write a book - just list things in one place that people have found helpful. There are probably a few things I missed, for which I apologize, but this is at least most of it. If any one wants to add anything, please feel free to do so.
• in reply tolauraflora
I am doing a lot similar to yourself, unfortunately my results aren't as good as yours...yet , mind you I'm only just startung to get my head around diet, epigenetics and neurotransmitters - man there is some years of study there!!
Good luck and may your legs forever remain calm.
lauraflora• in reply to
Have you looked into chiropractic adjustments? Altho the spine is not the cause of RLS (and I have said this before) if the spine is out of alignment there are two reasons why it makes RLS so much worse.
First-the nerves are pinched or otherwise compromised, which makes them so much more irritated. Second-(and Whitebuffalo has posted about this) the various neurotransmitters, such as dopamine, travel thru the spinal column. If there is a kink in the spinal column, this cannot happen the way it is intended to.
You can also look up spinal cord lesions or tumors causing RLS. (Whitebuffalo posted on this site about this, but I couldn't find the post again just now.) I am not saying that you have any of these things - I am saying that the spine is an important issue in RLS and should be investigated. After all, your nerves run thru the spine and into the legs, etc.
In my own experience, my RLS is terrible when my back is particularly out. When it is adjusted what little RLS is left is so much more easily managed.
Check it out.
I feel like this is medical and it's not easy. I've had this all my life and I know I'll have to be dealing with it the rest of my life. Unless hopefully they can find something to help us. I'm on a good diet I eat light healthy exercise take supplements and trying to get off my medicine which I'm way down proud of myself.
Well lucky you but when you have it as severe as some people then believe me we dont have a choice because we cant control it .
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