Iron dysregulation in the BRAIN, not the body, is the culprit, per recent, above article. This lack of sufficient iron crossing the blood brain barrier has led to a shameful dopamine transport mechanism (abbreviated DAT in the article). A shameful dopamine transport system means very little dopamine, especially at night, going to our arms and legs to quiet them. So Madlegs is correct, we have to look at every single medication (prescription and OTC and melatonin) we are taking that might be interfering with that abysmal amount of dopamine.
The good news is there's some very bio-available forms of iron that can cross the blood brain barrier and provide relief in the face of medications that exacerbate RLS. There's another piece to the puzzle that can make a tremendous difference. And that's how you take the iron. The OLD way of thinking was to take iron three times a day and that would get our stores nice and high. And we with RLS don't so much need to get our stores high, as we need to get it across the BBB. The problem with iron supplements is that our body will release a hormone called hepcidin - with that very first tablet of the day!!! Hepcidin will STOP the majority of that second iron pill of the day from getting absorbed into the GI tract. That hepcidin will hang around for a little over 24 hours so scientists are now thinking that a better way to take iron is to take a larger dose, every other day. That's hard to do when you have RLS every night, but we can at least not take iron three times a day but rather take a larger dose once a day, in the evening. Or if you are on painkillers or DAs then alternate between the two. By doing this the maximum amount of iron will be absorbed when we need it most.
Then we still can't sit back and relax because I'm sure most of us (not all of us) have had those days and weeks where the RLS is quiet, without any RLS medications. Which makes me believe that most of us (not all of us) have an "adequate" DAT and that it's other medical conditions, diet, or medications that are causing our "adequate" DAT to become INADEQUATE. So anything we can do to address or alleviate those other medical conditions, poor diet, deficiencies, etc. will be the best treatment of all. Little changes can go a long way with RLS. Not true for everyone. Some people will just have to take iron every night.
Yeah it seems to be the brain is the culprit. I've noticed that since I've started taking the Gentle Iron, (as recommended on here and on an empty stomach instead of how I was taking it with breakfast or lunch), and I've found a definite improvement in my condition. I've even had an odd night drug and symptom free.
I had been adding Calcium and Magnesium but after a bit of experimentation was able to rule them out and stuck with the Iron getting reasonable results.
I look forward to reading the study, thanks for that.
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Everyone on here, especially newbies, need to read the article and experiment with iron - within reason - as you explained to BacktoBasics. One or two tablets a day is fine provided you don't have hemochromatosis and get blood work done every six to twelve months. Sadly you almost have to be a biochemist to fully appreciate the article. The other thing is iron infusions. Now those scare me. They give people one or two shots equaling 1000 mg of iron which is absorbed 100%. The Gentle Iron that you and I take is 25mg per tablet and at most 40% is absorbed. So that's 10mg of iron a day as opposed to 1000mg in one day.
You do not "experiment" with iron, you have to get the blood tests first to see if you need the iron first, and if your body is storing it. iron overload is a very real, dangerous thing, so no one should just "experiment" with iron. Talk to your doctor first.
John Hopkins did an experiment quite a good few years ago now around this. They took patients with severe RLS and measured their ferritin iron levels then went one step further and did a spinal tap and examined cerebral /spinal fluid. It was found to be pitifully low in all the patients even those with good haemoglobin levels. This is because the body will take the iron stores first.It was brain iron that was extremely low. They gave them iron infusions and got their levels way, way up. Everyone improved dramatically but after around 6 -9 monthsRLS started up again. They repeated the spinaltap and once again brain iron levels were low. The conclusion was that in RLS we leech out iron too fast and they went one step further and said it was highly probable that the genetic defect in those with RLS was actually a defect in the way the body metabolises iron. Interesting stuff for sure
Of course as with most things in RLS world it brings up more questions such as why do some sufferers who have the iron infusions not get any improvement at all?
Many doctors think the reason for an increase in RLS during pregnancy is caused by low iron stores and many kidney disease patients have low iron stores and they are another group who suffer from RLS
Any med that blocks the Dopamine receptors will usually cause an increase in RLS so lots of meds to avoid
Finally it was found during post mortem studies on the brains of RLS sufferers that actually there dopamine levels were above average, it is the transport system of it the receptors that are faulty. However in the Substantia Nigra area of the brain the iron levels were abnormally virtually non existant
I couldn't open the link so apologies if I am just repeating from it!
I reposted the link right below my first post. Don't really need the link since we have you. You're brilliant! Yes, we do have more dopamine than usual. And I think you and I can figure out why iron infusions work for some but not others. First me
I think that if the infusions use a double sugar molecule such as iron sucrose very little of it will cross the blood brain barrier. Substances stand a better chance of crossing the BBB if they're more broken down -single sugar- like iron glycinate. People who do get relief from iron infusions for several months (and then not) is because of what I call the "wilting flower" effect. On a day to day basis, our receptors get just enough iron from our bloodstream to keep slugging along. Along comes 1000mg of infused iron in the bloodstream and the brain and our dopamine receptors suck it up and perk up. Who knows, maybe some of that infused iron even gets stored in the brain. Not only do the existing receptors grow big and strong but maybe some new dopamine receptors even sprout? Ta da - no more RLS - until those flowers, I mean dopamine receptors, wither on the vine, from lack of water - I mean iron. That infused iron only stays in the bloodstream for a short period of time (a few days?) before it is relegated to our body iron stores and from where our brains will likely never see it. AND, if people throw away their DAs, which are a drag on the receptors, then the effects of the infusion will probably last longer. Those receptors need a decent amount of iron 24/7 crossing the BBB to stay strong. 1000mg goes a long way to building up our receptors but not a lifetime.
Aside from infusions and what not, our brains need to be able to store some iron (like the rest of the non-RLS world) in order to make it thru the night, so to speak. The whole world's blood iron levels drop at night, but the non-RLS world has a brain iron reserve and can make a withdrawal, if need be, and their dopamine transport system keeps humming along, whereas ours comes to a screeching halt because our reserve is bone dry. I believe that's why the nightly ferrous bisglycinate works so well for some. It puts iron into the bloodstream, that is able to cross the BBB, and keep our receptors humming along, for the night. But by the dawn's early light whatever is left of that small amount of iron is stored, never to be heard from again. The other thing that is going on with our brains is "iron hogging" by the mitochondria, which are the energy cells in the brain. So in those cells scientists see an excess of iron!!! Just like dopamine, we have more stored iron in our mitochondria than the average bear. How un-neighborly is that?
Why do you think infusions work, or not? And if so, only for a while?
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I believe that's why the nightly ferrous bisglycinate works so well for some. It puts iron into the bloodstream, that is able to cross the BBB, and keep our receptors humming along, for the night. But by the dawn's early light whatever is left of that small amount of iron is stored, never to be heard from again.
That's been my experience, come dawn the iron is gone and the RLS cranks up a gear.
that is a question for the doctors at Johns Hopkins or Dr. Buchfuhrer. There are theories upon theories why infusions work for some people and not others.
As you point out- the whole iron story is not simple- and people should not mess around with supplementation wihout knowledgable medical supervision.
I got a serum ferritin blood test on my own insistence after researching rls on this site. I had to persuade my dr to authorise it.
It came back at 1186! That started a flurry of activity and interest. Still not resolved- not Hemochromatic , and otherwise asymptomatic and healthy.
Still have the jittery, fidgety legs!😆
So - one never knows.!
The point is that without the test , I could have shoved in a ton of iron and killed myself! My blood iron was low before that.
Anyone know how to test for that Hebcidin? I have a feeling that is at the root of my problem- but the Hemochromatic site here is moribund.-And I find the Iron Disorders Site full of Loons.
Yes there is a test for it in U.S. and much interest these days in hepcidin. Good luck, even here, finding a doctor to order it, or an insurance company to pay for it. Have you been tested for Hepatitis-C? Hepcidin comes from the liver mostly, as far as I know. In the face of infection a boatload will be released. In the face of a lot of conditions it will be released. So as I mentioned before, hepcidin will prevent iron from being absorbed from the GI tract into the bloodstream. It will also prevent its release from your iron stores. Still, how did your iron stores get that high I'm wondering. I can't believe that somehow iron is pouring into your bloodstream then getting stored but being prevented from leaving those stores because of hepcidin. Hepcidin doesn't work that way as far as I know. Your stores should slowly, but surely, be coming down, even in the presence of a lot of hepcidin...I think.
Thanks.I'm in Ireland and there doesn't seem to be much interest in it and my condition. I'm reckoning it's due to inflamation- but it hasn't reduced over the last few years - which leads me to think that hepcidin may be involved as it is the regulator of iron in the body.
I was normal 5 years ago- then had a major accident and ferritin went up to 3000+ during ICU and operations (multiple transfusions)
Just have osteoarthritis now.😢
Anyway- thanks for your interest and reply- appreciated.
I don't want to take up space on this site for a side issue.
Ok, one more thing. Your iron stores have come down since accident so that is great. You didn't tell me if doctors tested you for hepatitis? Well this is what I would do and take that for what it is worth - not much. I would do a raw diet. Not vegan. Just raw, as much as possible. My protein source would be raw fish from reliable source. Great diet for diabetics as well. It gives the pancreas and liver a rest. A big rest. They barely have to work at all when food items are raw. Every living plant and creature, including humans, contain enzymes that will digest itself. Meaning when you eat raw fish, it will practically digest itself in your stomach. If you cook it, then you will most definitely cook out those delicate enzymes, and your body will have to produce enzymes to digest it. Milk is heated and is a dead food - meaning no self digesting enzymes. So milk, bread, pasta, any cooked and complex food will work and work and work our enzyme- producing organs to death. A raw diet will give it all a rest. Skip the sugar too and concentrate on nutrient dense foods. Some people will say just take enzymes and go ahead and eat cooked food. Sorry, there's nothing like mother nature. We can't beat her, we can only cut her out. Cooking cuts her out. Mother nature even put enzymes in our tissues that will help some creature that eats us to digest us. Enough gross anatomy for one day.
No, not purple fruit. But I have heard about iron chelation with pharmaceutical and only in the context of diseases, especially of the liver. We don't know that there is a disease process going on with you. The way I see it, your iron stores have come down nearly 2000mg since your accident. Does that mean you're basically on the mend, no matter how slow it seems? The body is loathe to release iron from its stores. I'm sure you know that. It's like a stingy banker. If you give it a good enough reason (like menstruating, marathon running) it will release iron gleefully. But I bet just an aerobic's class a couple of times a week will hasten the demise of your bloated iron stores. The other thing, and this is far out there in the stratosphere, is your gut microbiome. The more of the good bacteria you have, that have been part of our guts since the birth of mankind, and that doesn't trigger the release of hepcidin, will steal away some of that ingested iron, leaving less to enter your stores...theoretically speaking.
Madlegs this article is about HH, which you don't have. So remember things like black tea which they recommend to prevent absorption of iron is likely to worsen RLS. However things they recommend to chelate iron out of stores is probably less likely to cause RLS and may actually help your RLS. A while back I remember reading about lactoferrin being good for RLS and an iron chelator. Are you in the research mood? As a matter of fact the best and most expensive lactoferrin comes from your grass-fed New Zealand cows.
Well, a raw diet would put me in the hospital, since I cannot digest food, gastroparesis and other things going on. if one can eat that way, that is fine, but not all people can do that.
am just saying I cannot digest raw food. I get doubled over with pain, and it is wicked. I am just telling my experience. That is what this group is for, everyone telling their experiences, and sharing information.
Well not so fast with the thanks. Even though it seems that ferrous bisglycinate is more readily absorbed into bloodstream especially if you're older, there is no published reports suggesting that once absorbed this form is more likely to cross blood brain barrier. So it's getting iron into the bloodstream at night that counts. Once in blood its converted into Fe lll and bound to transferrin. Something like that. But if your iron stores are too high your body won't let it into bloodstream so no relief from RLS no matter what type of iron u consume. I know there are unpublished reports from the manufacturers of magnesium threonate that claim it is more able to cross BBB than other forms but I'll believe it when I see it. The bottom line is when we're suffering from RLS at night and we want to get the most bang for our buck an amino acid form of iron is probably the way to go. Glad I got that straightened out. 😳
My Ferritin was 49 with horrible RLS, supplementing with 18mg Albion Ferrous Bisglycinate Chelate daily has eliminated RLS. Subsequent tests showed Ferritin at 106. I decreased supplement to Zero and Ferritin went down to 75 (and RLS started in again on selected nights). Now I'm at taking the 18mg 3 days/week. Also started with Probiotic Lactobacillus plantarium 299v (LP299V). See article here... onlinelibrary.wiley.com/doi... Thank you so much for the article link, knowledge is great as many of you know - the medical establishment is mostly clueless toward RLS. Onward!
Doctors are clueless, many, but not so much those who do research, like the author of the article. Is it possible that we're looking at this all wrong?
Look, I have something called a sliding hiatal hernia. Allegedly congenital. I had heartburn from age 8 to 30 and would do various things to control the heartburn including chewing gum!!! Then no heartburn from age 30 to about 49 when it started up again. When I was young it seemed doctors didn't realize that these hernias cause heartburn. The hernia allows my stomach to push up into my esophagus which then allows acid to wash up as well into my esophagus. There's lots of ways to treat this type of hernia so that symptoms are relieved. Everything from antacids to enzymes to zinc to a raw food diet to losing belly fat which will give my stomach more room to rest in place and make it less likely to be pushed up into my esophagus. But as you can see, for the rest of my life I will be on the edge of heartburn and discomfort. There is no cure and doctors rarely perform surgery on this type of hernia and I probably wouldn't do it anyways. My stomach and esophagus are not diseased and it is unlikely I will die from this.
I think that's how we should look at RLS. We will always be on the edge and there is no cure but there are things we can do to stop ourselves from falling off the edge. DAs and iron are probably the most direct route. But there are other substances and actions we can take that supposedly will "up-regulate" our lousy dopamine receptors such as fasting and calorie restriction. Will this cure our iron dysregulated brains? No more than antacids will cure my hiatal hernia. There are stories of people taking antibiotics (or having high fevers) and being RLS (and medication) free for weeks. What's up with that? Do the antibiotics and fever lower the number of iron loving bacteria thus freeing up more iron for our brains? I don't think antibiotics or a fever are a cure but rather an interesting remedy. And why should spinal injury/surgery trigger or worsen RLS for those of us on the edge? I think I know why but I'm just pointing that out.
We have to stop thinking about a "cure" for RLS and accept that for now we will always "be on the edge" and need to explore different avenues of treatment as I do with my congenital hiatal hernia. And so many avenues have already been explored. The iron, like antacids for my heartburn, will address the problem in the most direct fashion. And for some OTC antacids aren't enough and they move on to prescription proton pump inhibitors. I'm sure for some iron (and/or DAs) will not work or not work completely and these people may need to explore other ways to up-regulate their genetically down-regulated dopamine receptors.
There's probably thousands of ways of pulling ourselves back from the edge and we need to come up with and test each and every safe one. The "absolute cure for RLS" guy has put forth a lot of them. What he needs to realize is that the name of his webpage is off-putting. If he had a webpage entitled "an absolute cure for hiatal hernia" I would think to myself, "silly man, the hernia will always be there." But he would be right in so much as things like weight loss, diet and antacids will stop the worst symptom which is heartburn.
Finally, I agree with what you have said, Oolong. I get new people every day asking the question "What is the CURE"?? As you have put it, we have to stop asking that question and concentrate on what we CAN do about RLS. Some of us have been in groups and online and researching for 20 years or more. Back in 1996, we only had 2 web sites to go to, and one was horrible. We had to research every little thing, and we discovered things together. Now, there is so much MISinformation out there, we have to be VERY careful what we read and look for. There is no better source than the Johns Hopkins web site, and also the RLS-UK Foundation web site and Dr. Buchfuhrer's web site. other than those, I steer away now. Am always looking for something new, but the research $$$ are just not there.
With reference to your last sentence in your post above, I have a feeling that quite a few of the members are sorry about your long postings too and may well be glossing over them.
I am also on a probiotic for several reasons, the main one being gastroparesis, a condition that inhibits the digestion process. Knowledge is power. The more awareness we raise on RLS, which I had to do at my doctor's appointment today. Every time we spread the word to even one person and they "get it" it is a good day.
make sure you get your iron and ferritin tested first. one should not just start on iron because someone here says to. look what madlegs posted, had a ferritin level of over 1,000! That is why tests are needed first.
Thank you so much for posting this! There are a few others on here, myself included, who have found iron to be key in managing RLS. White Buffalo has also shared info on iron from John Hopkins. I am saddened to see people, esp. new ones on here, just using medications to try to manage their RLS, instead of taking some iron, and then seeing if they still need meds or a smaller dosage. Especially since so many people taking meds seem to have trouble with either the effectiveness or not of the meds, and the side effects.
Give iron a try first, is what I am trying to say. Then go from there as needed. I take iron bisglycinate, which is easily absorbed. I take 25 mg. at night only. Others have found also that taking it earlier in the day does not help. So your info here helps clear up the finer points of how iron does not get into the brain with RLS people, and why one needs to take it at night.
I hope people will sit up and take notice. This might not apply to people with spinal injuries, etc., causing their RLS, but it would certainly be applicable to those of us who have (I think it is called) primary RLS. And especially new people, who seem to be pointed mostly to drugs. Those of us who have found natural ways to manage RLS need to speak up periodically, or it gets lost in the lengthy feed of the postings and they wouldn't know where to look.
Yes, I agree with you Laura. I think the RLS scientific community has gotten to the point where they are in agreement that brain iron management (or rather genetic mis-management) has led to a very bad dopamine transport system for us all. A bad dopamine transport system means that any substance that tends to compete with the release of dopamine (ie antihistamines or histamine for that matter) or any spinal injury that further slows down the transmission of dopamine through-out the central nervous system is best avoided or tended to. So rather than allowing this explanation of RLS to get lost and risk new people feeling lost and helpless and hopeless I think the Administrators should post it front and center somehow, someway.
In another post I mentioned how knowing that a hiatal hernia is causing my heartburn has made all the difference in the world to me. Physically and psychologically. I feel that I am in control of it, rather than it being in control of me. It's like pulling the mask off of a monster. I wish the Administrators here would contact Johns Hopkins and tell them "hey, a lot of our folks are getting immediate relief with a small dose of bio-available iron, what's up with that." And I for one know that the iron is no more placebo than antacids are for heartburn.
Yes, Oolong, I agree with you that this info should be posted front and center, but I don't know how that would happen in this "news feed" sort of style. I tried just that a few months ago, listing several things that I and some others had found very helpful (the iron, and a few other natural supplements, etc., chiropractic care for getting and keeping the spine in alignment, stretching exercises to keep the body and spine flexible.)
However, that post, which elicited a lot of excitement at first, got lost again in the feed. I think also there should somehow be ONE place where this info, and info about medications, could be listed, so (esp. new) people could access it easily and altogether, instead of in bits and pieces or dependent upon someone listing random info.
Whitebuffalo also posted and linked several pieces of scientific info about iron, about the spine and dopamine moving thru the spine (interrupted or not interrupted, which corroborated what I advised about chiropractic care,) about histamine, and other info, etc. But all of that, too, got lost in the feed.
That would mean the Administrators of this site should come up with a way to do that. A simple listing system of natural, and one of medical, treatments at ones' Fingertips. How do we go about getting them to do that? Otherwise it is all just so scattered.
Maybe we start by renaming it to RLS/BID. BID = brain iron dysregulation. The problem is even though the medical community recognizes this dysfunction it is really only us RLSers that has discovered the benefits of one measly bio-available iron supplement at night. "The road less travelled and that has made all of the difference." Using iron infusions and getting people's stores up to 200 to 300 seems like overkill. So I think.
Of course White Buffalo is correct. Anything that interferes with the transmission of dopamine through the nerves in the spine will worsen or trigger RLS. It's all over the internet. Sometimes if people can just resist the temptation to go with the DAs their RLS will disappear or return to baseline with a few months after spinal surgery, especially where a spinal block is used.
You're a wise woman. Keep helping wherever you can and I will do the same...until the world listens.
I have never taken DA's for my RLS for longer than 3 months. They made me so physically ill, I could not take them. As for the scientific community, the ones who do the RLS research, dopamine agonists are not the first choice meds any more. Check out johns Hopkins and other RLS web sites. This is ONE reason why JH has also done an 18 month study on opiates, they do not use DA's as their first line meds any more.
The RLS-uk web site has been redone and that is one place for a lot of information. That is the RLS-UK Foundation. Also, there is a web site for the US RLS Foundation, and they have a ton of info in one spot. AND, on DR. Buchfuhrer's web site rlshelp.org has ton of information in one spot, the treatment page is great, just one thing needs to be updated, the dosing on the dopamine meds. That info is a little outdated , which he realizes, and the new lower dosing it not there yet. But, it will be soon.
Exactly, and totally agree on the spinal injury issue. I broke my back when I was 14. 4 back surgeries later and 2 neck surgeries, have not helped my RLS issues. But, spinal trauma, since it is our dopamine transport system, is one causes they are looking at, and of course, needs a lot more studying. Many people can manage RLS "naturally" Many can not, this is more than a natural vs "unnatural". I am very happy when people can carry off the all natural thing. But, we also have to keep in mind that this will not work for all people, and lots of people here and in other groups do combination therapy. Everyone has to experiment to find what the best treatment is for them as an individual. It also depends on p]Primary RLS vs Secondary RLS.
All I'm saying is that iron is not an alternative treatment for RLS that can be lumped under the heading of natural remedies. No more than anyone can say iron is an alternative treatment for anemia. And that's a fact
I never said it is an "alternative" treatment in the truest sense of the word. it just does not work for everyone, like no treatment works for everyone, is all I am saying. Even the experts cannot agree on what helps and what does not. So, how are we supposed to? lol If you read what me and others are saying, one must be tested first, instead of running out and picking up supplements willy nilly just because.........It is the responsible thing to do to advise levels to be checked.
From my experience most of us do not have respite from our RLS....just a point....it is a chronic condition, exacerbated by many influences, less of a problem when it all comes together ...drugs and lifestyle, food etc. , but most of us on this site do not have quiet periods without it...however, I do agree that I feel better when I have had antibiotics...interesting....
Do so agree, a quiet period is a huge treat, funnyfennel, and does not happen that often for a lot of people. Sadly. Oh, forgot to also comment on the antibiotic issue. I, too have noticed this for myself and others in this group and others have brought it up that when on antibiotics, no RLS. Also, many people have discussed the fact that when on steroids, like prednisone, for some reason, do go into a quiet period, So somewhere in there , there has to be a clue.
I HOPE everyone will get their ferritin level tested before they decide to start taking iron.
We have been saying the BRAIN, not the BODY, for years, but you should know that, since you have been here, in and out, of the group for a looooong time. The iron cannot pass the blood/brain barrier, so the iron is low in SOME people. We have always said RLS is neurological, as in the BRAIN, I know I gave since 1996. BUT, again, as usual, iron and ferritin is not the ONE cause of RLS, and no matter what kind of iron you using, only 14% of people with RLS are actually helped by iron supplements or iron infusions. I wish it were THAT easy as you say, we would not need all these support groups, and I know about 6,000 people aside from this site with RLS. The studies at johns Hopkins in the US on ferritin and iron have now been stretched to 18 months. Again, even Johns Hopkins, at the RLS Care Center, says that only up to 20% of the people with RLS are helped by iron, or infusions, and yes, I do know about the different kinds of iron, but you know that, too. And, infusions/iron supplements, no matter how it has been done, have not helped me. You are so sure that people here can have "quiet times" with no RLS or meds. Not so. I do have quiet periods, BUT with the meds that I take for RLS. if I do not have them then, yes RLS goes NUTTY. But, I have not had a non medicated "quiet time" since I was 30 yrs old, so for 30 yrs. I can back up Johns Hopkins numbers with just going thru my groups, and it is less than 20% of all the people I have known for 20 yrs, that are helped with any type of iron therapy. At least about 20% seem to be helped to some degree, that is better than 0%. But "Mystery Solved!" is a little extreme, since you are not telling us anything new. I would say most of us know that RLS is neurological (in the brain) and not a "body" disease, even though it feels like a "body" disease most of the time.
AFTER they get off the high doses of dopamine. The quote you use refers to people who have been thru DAWS, and the fact that after they get through the dopamine withdrawal , many many people improve vastly.
Well, I am not trying to insult people who take meds. I have learned , on this site, that there are different causes for RLS, primary and secondary, and I am not trying to be judgmental. However, many people are helped by non-drug approaches, or by using natural approaches and drugs combined. I just think that for new people to start out with drugs, without looking into other approaches or even knowing that other possibilities exist, is unfortunate.
I think that both types of info should be available to those who need it, and they can go from there. Some of us on here have also mentioned things like yoga and stretching exercises and chiropractic (the last 2 are from myself,) as having been beneficial in their own experience. People need to see the whole picture and find out what works for them. And yet, often drugs are the only thing doctors offer their patients, which gives the patient the idea that there is perhaps nothing else. And many people do not want to take drugs, if they can find a different way. So I am speaking up about what I have found to be helpful. You go ahead and speak up about what you found helpful.
But, first of all, none of us should assume that we know the extent of a new person's symptoms and judge them to be just like ours, so therefore they should do or take such and such. I end my suggestions by saying more or less that not everything works for all people and they have to find out for themselves. I have certainly mentioned that some people are only helped by drugs. And I have mentioned that some people are finding success with natural methods. That is only fair.
Many, many people use meds, yoga, compression socks, heating pads, sports cream with menthol, iron, etc. No one just started on meds right off the bat. Before meds are tried, we go through a million home remedies to find something to help. I do not tell people to take meds at first, we go over all kinds of things that can help first. By the time people, most of them, get to the point of joining a support group, they are in desperation mode. I myself, besides my meds, I use sports cream, and avidly use yoga, lots of stretching, pool therapy, heating pads, meditation. Combination therapy works well, and also is a good distraction. And, I agree about the "Absolute Cure Guy" He USED to be a member here, but was charging for "counseling lessons" which is against the rules, for one, and also his libelous web site, including libelous statements against Dr. B, the RLS Foundation ( US and UK) has been an issues for a decade. He has absolutely no qualifications as a counselor, and believe me we looked into him with a fine toothed comb.
Deleted - (please refrain from "shouting" at members) you cannot simply lump IRON into the alternative, natural treatment arena for RLS anymore than you can categorize iron as an alternative treatment for anemia. Iron is the premier, best treatment for anemia, essentially a cure. Same is true for RLS. Johns Hopkins and other sleep disorder clinics all over the world are doing large scale studies of iron for RLS. They are not doing large scale studies of yoga or heating pads or leg creams for RLS or even magnesium.
I am just trying to show the other side of it, because there are many sides to RLS. I am not pushing opiates, so please do stop. I have asked and asked that you message me, per group rules.
You chased him off and he's quite brilliant and had a lot to offer this forum but you weren't about to allow alternatives to opiates to be discussed on here. You just about chased LauraFlora off here until I practically begged her to stay. She too is brilliant. By the way, that book you quoted from the other day - the author's website asks for donations so that she can keep spreading her message??? Pathetic!!! There should be laws against that. Smart money is with Mr. Absolute XOX
in reply to
Oh yeah and DicCarlson you tried to pick a fight with but he would have none of it.
I did NOT chase him off. he had zero qualifications to offer paid counseling sessions. End of story. I have been dealing with David W. for years. Look at his blog, and tell me again that I am the one who chased him out of here. He broke the rules that are extremely clearly stated here. AGAIN, PM me, please. When is the last time I even mentioned an opiate? I am dealing with dopamine meds and augmentation now in all groups, and have only mentioned opiates in the same exact context that Dr. Buchfuhrer has. Just because opiates are the only thing that I CAN take that work for my Primary RLS, I am not talking about them 24/7 Believe me, I do not have the power to chase anyone off, and he had problems with many many people. Going after an admin here is LOW. "When they go low, we go high", is a good motto for life in general, and I am not bullying anyone. PLEASE send me a PM. This is childish. You say I talk about nothing but opiates which is not true, and anyone can check that out, it is all here. You, on the other hand refuse to be nice to anyone who has an opposite view than you do. if your special iron was the answer for EVERYONE, then there would be no need for all these support groups. And, I can't be that much of a bully, since I have over 6,000 people in my groups, and have had half of them with me for over 20 yrs. So, we all need to keep an open mind and that applies to you, especially, at this point in time. An open mind is a happy mind. Cheers! When you really want to get into it, and actually have a real and honest adult conversation, please contact me in private, as kaarina, the lady in charge has requested that you do, again per the group rules. We have rules in all groups for a reason. period. This is neither productive nor supportive. Deep breaths.................
Would you like me to list the names of all the people who talk to me in private to get away from the craziness? NOT that I would EVER do that, because it is PRIVATE. Insulting admins is not cool. There are no bullies here, except one that I can think of. Respect for admins is essential, and she is telling things that you have been told before dozens of times. I COULD list all the screen names you have used over the years. hmmmmm? This is the last time I will reply to this ridiculousness on the forum. Send me a private message and let's have the conversation, please. Admins asked you to do that, so please do so. This is not our first rodeo as they say. There is more than one way to "sin a cat" as the old saying goes, and there is more than one way to treat RLS, for many reasons.
Your body stores of iron have very little relation to RLS. I have robust stores of iron yet when I get an RLS attack it is stopped within an hour by the ferrous bisglycinate. At this point I have heard of dozens of other people, including numerous on here, that are greatly helped by the bisglycinate even though their iron levels are fine. There's a glitch. Isn't there always. In cases where it doesn't work so well I have found that the person has a serious underlying disease or that the person is taking therapeutic doses of anti-depressants. For instance when I was taking 1mg to 1.5mg of melatonin I was able to get by with one 25mg capsule of ferrous bisglycinate. When I unwittingly upped the melatonin to 3mg I had to take two 25mg capsules of the ferrous bisglycinate. So someone who is taking therapeutic doses of an anti-depressant might need to take even more than that. But you can't take more than that. The best treatment was stopping the melatonin. Now my RLS is again intermittent.
The ferrous bisglycinate is a gift from above, sorry you're not interested.
Jeanniebeannie, do you know what your ferritin level is. ? My ferritin level is good, so i would not take any more iron pills of any type and i still have RLS even with a good ferritin level. So, taking iron is NOT the magic answer for all of us and there is no next, apart from keep taking your meds.
Not at all my iron has been done many times and doc says i dont need iron so no joy . I have tried everything so not new to all of this .so not my loss at all .
It's a very tough concept but what your doctor tells you about your body stores of iron has very little to do with your "brain" stores of iron. Our brains can't store iron. So at night when blood iron levels drop we get RLS whereas the rest of the world has a reserve of brain iron and don't get RLS. Have you ever wondered why RLS is so much more prevalent at night? That's why we take a little iron at night... to make it through the night Be well Jeannie XOX
I've ordered the ferrous bisglycinate and will report back after a trial run of 10 nights or so. I'm currently in a cycle of having RLS 9 out of 10 nights. I take no prescribed medication. I'm looking forward to see if it can help me. Thanks to all who have posted information regarding….
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Ferritin level information
Existential RLS crisis
A vitamin solution found!
Iron Infusions - the type of iron used may matter.
