How To Become An RLS Expert Yourself

Read the following:

Done! Now you know as much if not more than the RLS experts.

43 Replies

  • Good comprehensive article,- well written. Could we send it to all doctors please!?

  • OMG Madlegs it feels like I've been waiting a lifetime for an article like this to be written. And it's still not quite there. But it's a darn good summary of a thousand articles I've read over the past five years and that are kicking around up there in my brain somewhere. There's still a few missing pieces, but this puzzle is closer to being solved than a lot of other conditions I've been researching over the years. Between you, me and whoever else on here still reads my posts, I'm disappointed with Hopkins. You can't count on anyone but yourself and common sense. The cavalry ain't coming Madlegs.

  • I too was terribly disappointed in John Hospkins. When I traveled to John Hopkins, I had my iron lab tests in hand and I had detoxed off mirapex for 2 months. After examining me, the doctor thought I had an impingement in my neck and for me to see a neurosurgeon and he wanted me to come back for a sleep study. Back home I had an MRI and it showed no impingement, and I wasn't going to travel to Baltimore again for a sleep study, as I've had 2 in the past and I could get them done in my home town. However, I will be forever grateful to the "good" doctor for his research that the dopamine drugs were the cause of augmentation, where all my local doctors could say was, "restless legs getting worse, just take more Miripex".

  • Hi, ahomeu, which doctor are you grateful too for his research on the dopamine meds. ?

  • Yes, let's not slam Johns Hopkins, who is doing some of the most important studies and DO know about augmentation and exactly how to deal with it. Dopamine withdrawal from doses that are too high is really basic information at this point, and any doctor who cannot look this up and read for 5 minutes, needs another job, instead of increasing the dose over and over. So, we can thank one doctor in particular.

  • Have you tried taking iron - in the form of ferrous bisglycinate yet?

  • I'm doing a take back Madlegs. The Cavalry is already here, it's you, it's this site, it's the pharmacist who gave you the unscripted antibiotics and the doctor who delivered my son. As I'm reading articles on a cold lifeless computer I forget that behind those articles are the men and women of science and that they have lifted us all up in one way or the other.

  • Yes, really. We should always have this article on hand to give to clueless doctors.

  • You can't count on doctors. There is not a single RLS doctor I would waste a minute or a nickel on. Deleted by Kaarina (volunteer) - borderline offensive. But that's me. I'm a know it all. Know it all's can't be bothered with other people who think they know it all. The doctors (deleted by Kaarina (volunteer - borderline offensive) think that women develop RLS while they're pregnant because their iron stores go down. It's not their iron levels, it's their prolactin levels, combined of course with their barely functioning, genetically lousy dopamine transport system. And some RLS doctors think that the H2 antacids trigger or worsen RLS because it impairs absorption of iron causing levels to drop. Interesting idea but the only problem is that people develop horrible RLS within about an hour of taking the antacid. I can't put my health or that of my family's in the hands of these mere mortals. Don't get me wrong, they're good, just not good enough. If these so called RLS experts had any real answers then none of us would be suffering. They have nothing to offer but various combinations of mostly ineffectual drugs. I think collectively we are more likely to figure this out than the most world renowned sleep centers out there. Just gotta keep chipping away.

  • The nearest ailment I can compare RLS to is Lyme disease- in the sense that it is extremely difficult to diagnose (laboratory wise) symptoms are all over the place, Doctors have to depend on patient stories and unless treated promptly and correctly can become life threatening. Oh- and most doctors haven't a clue about either.

    Big pharma don't really have much incentive to research either - so we will continue to be our own researchers and advocates.

    Power to the sufferers!👹

  • Well, now that you mention Lymes I guess I have more of a love/hate relationship with doctors/researchers. I love the researchers that discovered this, even if it goes nowhere. I think I previously sent this article to Raffs


  • Thanks- wish I'd known that 10 yrs ago when my daughter got it. My own Dr wouldn't give her the antibiotics- so I nobbled them from a friendly pharmacist. Saved my daughter's life. And she still got very sick.

    Like yourself with the Med profession. Love em, hate em!

    I'll pass that on to her.


  • Oh wait I didn't know that. I have another favorite Lyme article. Let me dig it up. I know you have to keep chasing because it lives in biofilms. They didn't think it did but a few years ago they decided that does

  • Hurry up!😆

  • You're a good mommy. I would move mountains for my son. The Claritin treatment I read can cause very bad herx reaction. Not for the faint of heart. Here's my other fave:

    Hope I copied the whole link

  • Yeah, you gotta also google Lyme and biofilm. Just confirmed in 2016 that there is where the critters call home.

  • Thanks - one needs to search "lyme disease" on that site- or check out 'Greg St Martin'

    Very interesting. It was incredibly slow to recover- she had chronic fatigue for years. Heaps better now.

    She reckons I'm the best Dad in the whole wide world!!

    Don't worry- Pippins was under the same impression concerning my gender!😘

  • Now that's just not right. I think my brain will have to do more of a shift to accept that you are a man than it can handle. I shall try sir! So glad your daughter is better. Thank heavens for small miracles.

  • Greg St. Martin? Meaning the camp owner for children with cancer?

  • I don't know- when I did a search on that site , his article came up.!

  • Just because there are "experts" does not mean they KNOW ALL. It means they know more than most doctors who have not studied RLS and done studies, etc. "Experts" in Diabetes cannot cure that, no one can cure all cancer. I find your rant against the medical community misplaced. Experts in Parkinson's are experts at treating it, NOT curing it, but understanding it, and so on. Yes, we have to be our own advocates, but one has to admit this is why doctors "specialize" in one area, so they will have more knowledge of their particular area. if you think about, many doctors have helped you all along thru life, whether you think so or not. Some doctors have lost their passion, some just are better than others and on and on, like ANY profession. There are "experts" is all professions, do you want a plumber fixing your roof? Do you want a roofer fixing your pipes? NO. Same idea.

  • I just read the article and will take it to my GP. I've suffered RLS (in ALL areas, including shoulders) for around 40 years. My life has been awful. Over that time I've seen every therapist you can name, both private and NHS, to no avail. One psychologist said I was depressed and gave me anti-Ds, which made it worse. I still have a letter I wrote to myself (while throwing my limbs around) around 4am some 25 years ago, in which I gave myself permission to end my suffering when my children were older and independent. They would still have their dad, I reasoned.

    About 18 years ago as a mature student I did a BA(hons) degree in Illustration, and I managed this only thanks to Cannabis, which cost a fortune over the two years I used it. Then, one day my son had a motor-cycle accident from which he sustained a broken wrist, and the hospital gave him three Dihydrocodeine tablets to bring home. He didn't want them, so i took two when i went to bed - and wow! I had my first peaceful night in decades.

    Doctors at the time were insisting I didn't have RLS because "you can only get it in your legs and you have it in your arms too". So, I searched the net and found that around 20% of those most severely afflicted get it in the arms too. Back I went to my GP armed with many pages of info and, to her credit, she read it all, then sent me to a 'specialist' in RLS, who advised her to give me Dihydrocodeine for as long as it worked. That was about 16 years ago and I'm still taking it. She told me that 8 tabs per day was the absolute most I could take, and in fact i've never taken more than 7 in a day. Of course, these are controlled drugs (opiates) but I have never abused them. They saved my life; without them I would have left this life years ago because i couldn't take it any more.

    One problem I've had is that many pharmacies only have the Dihydrocodeine produced by Bristol Laboritories - and they do not work so well as those from other labs so I need extra. They insist they're all the same, but they're not.

  • Unreal! You have a will of steel. Your story and experience will help others...for whatever that is worth. I would love to know more about your medical history. I too have had RLS since childhood but it was mild and intermittent, at least until recently. Anyways, do you have any other long standing conditions or even have you had any bad accidents that started long ago for you as well? Plus, do you take any non-RLS drugs or supplements? People on here will disagree, but you represent more of a minority. To have whole body RLS everyday for 40 years and nothing but RLS - meaning no co-morbid illnesses such as childhood diabetes - is rare. RLS, as you can tell from the article, has come out of the dark ages and there might even be ways to tweak your drug regimen. But first more about you?

  • My RLS began when I was about 17, intermittently, as a mild crawling sensation in one or other of my arms. I lay on the arm and it mostly went away; it wasn't until my pregnancy at age 26 that it became full-blown.

    Yes, my life has been Hell with this condition, and has greatly worsened with age. Aged about 28 I was given Tegretol, which stopped working after about five years, after that I had no medication until the Cannabis in my late-40s. It did help but cost a fortune and was illegal, of course.

    The RLS was never diagnosed until my sister drew my attention to a magazine article about it - I read it and thought - wow, that's what is wrong with me! So, I self-diagnosed after years of thinking I was alone and going mad, my body bruised and sore from flinging myself against the wall and trying to get my husband to pull my limbs out. As I described earlier, a while later I started on Dihydrocodeine. My great fear is that my GP will stop prescribing it, so I have saved a back-supply.

    There is a fair bit of Epilepsy (not me) in my family, along with Dyslexia and one case of Asperger's Syndrome. I think the Epilepsy why i was given Tegretol originally, but no investigation. I've had total knee-replacement surgery because of osteo-arthritis, inherited from my paternal grandmother. Lots of fun when the RLS is in that area...pain as well. I am also a chronic insomniac, which makes things much worse as you can imagine. My nephew also has RLS but he's a good sleeper. His wife gets kicked through the night while he sleeps.

    I don't get the RLS in the mornings, nor in the afternoon unless I'm travelling, or at the theatre or trying to rest - anything that means relaxing for long. These are the only occasions I medicate during the day. It's normally around 7pm, just after dinner, and what happens is I become very cold and yawn constantly, watery eyes and so on, along with the usual sympoms. It can start anyehere, but mostly it rises in my left foot. I take my pills and clear dinner away and remain active for about 30 mins; by then i can usually almost relax, though I may have to take an extra half a tablet, depending on how vicious it is.

    Though I don't normally get this during the day, I do ALWAYS feel a very low vibration, like a hum which I seem to be able to actually hear, all over my body, which doesn't disturb me much, and that, too, goes away with enough medication.

    Hope this helps. BTW, am I on the correct part of this site?

  • I forgot to add that anti-depressents and Melatonin supplements worsen things.

  • Is it fair to assume that you have regular blood work done (especially during your pregnancy) and that you're not anemic or diabetic or lacking vitamin b12? And normal thyroid levels as well? Speaking of melatonin, I had mild intermittent RLS since and childhood and up to early 40s when I started taking 1mg of melatonin. Then I developed restless body but didn't make the connection. I read on the internet to "just take iron at night" that "there is just something about that free floating iron that helps." Because I have IBS I bought a non-constipating form of iron called "Gentle Iron" from a health food store and is in the form of ferrous bisglycinate 25mg capsule. It worked that night and every night. One day I ran out and the health food store was closed so I bought some ferrous sulfate from the drug store. I fully expected it to work (just leave me constipated) but it did not work. I believe it is not as readily absorbed as the ferrous bisglycinate. When I upped the melatonin I had to up the iron. Finally I made the connection and stopped the melatonin. My RLS went back to being mild so I only take when I get an attack.

    Eventually I learned that people with primary RLS have low levels of brain iron and I believe that I am giving my brain some iron when it needs it most - at night. Think about giving it a try. You can buy it off of Amazon or even Ebay or a health food store. I recommend 25mg. It's usually about $6 for 90 tabs. If you like it after a night or two please discuss with your doctor. Even if you don't like it you might want to try taking it for a month (only with doctor's permission) to see if you get relief after a while, which many people do. If you put the following names in the above search box you will hear other people's stories - GillRLS, Bganim, LauraFlora, DicCarlson, Chirpyandcheerful. Also, LauraFlora has numerous other wonderful suggestions for the RLS. Good luck

  • Thanks for the suggestions.

    I don't have regular blood work, I'm not anaemic or diabetic. I've no reason to believe my thyroid levels are abnormal.

    I will ask at the pharmacy for the supplements you suggest, if they are available in England, that is.

  • Not available at very many pharmacies anywhere. Healthfood stores or online. I use Solgar's Gentle Iron but if you put ferrous bisglycinate into Amazon's search box or even Ebay then you will be given a choice.

  • Well Thoughtful I'm doing a Take Back. We all stand on each other's shoulders and that includes the men and women of science and medicine who got us to the point of the above article. If you encounter a doctor who is unfamiliar with certain aspects of RLS then engage them in a conversation and ask them their opinion of the article. I truly did not post it to denigrate doctors but rather to empower the lay person. "Luck favors the prepared."

  • Thanks tredlight. Read and digested, very helpful and informative!!

  • i have seen the article before, so its not new for me. How does anyone know what RLS experts are doing behind the scenes, no one until they issue anything they have found out. I know that one doctor at Hopkins clinic is doing alot of research on iron. People are too quick to point out that no one is doing anything for RLS research. It takes money, and money is not that available for research. If you need to complain to anyone that more needs to be done for RLS then complain to your government, and we know where that will get us, no where, as funding for RLS, we way down the list that if its even on the list.

  • I'm not complaining, I'm rallying. We need to do our own research and experiment on ourselves. That's what ya gotta do sometimes. That's why I posted the article. So people can begin to use understanding and logic to come up with some of their own answers and not pin all their hopes and dreams of a cure on doctors. You gotta stop hating me and the ferrous bisglycinate - it's bad for your RLS and your soul.

  • I have no issue with you posting the article. Yes you are complaining, you are complaining that not enough is being done for RLS, and that i agree with, but like i said its all down to money. If you think "we" can find a cure then dream on. We can find what can help us and give us relief. What we DO need is better treatments while we wait for the "cure" which will probably not appear in my life time or even yours. There are many conditions out there that are waiting like we are for a cure. Hmmm, i dont think i have ever said i hate the ferrous bisglycinate just that people should get their ferririn level done first. And its not going to help everyone, regardless of what you say. I think you will find that is what i do say on posts.

  • Good comment, Elisse. Saves me some typing, and yes, tredlight, you are/were complaining and criticizing. You KNOW you have been helped along the years. Would not have all these articles to post if not for the medical profession. What would you be googling? lol We have covered the "need more research" subject, I think we can ALL agree on that one, but it is not a news flash. So, if you are trying to rally the troops, I would be wording the original post a little differently.

  • There is a lot going on that we have no idea about, some things we DO know about, and a few new studies coming out. Without the "experts" who you seem to despise so much, but loved them a month ago, tredlight, I never would have known so early in my RLS journey what RLS even is. There are MANY diseases that can be treated, but not cured. I am cancer free for the 2nd time ( a few years back) and I certainly appreciate those experts.. I find it highly insulting that the people who have helped us the most, are the very ones you are putting down. 2 big studies being done at Johns Hopkins, and another one being done in Houston, Texas soon on augmentation. We all have different journeys, but I , for one, do not like the "tone" of this post. There is NO funding for anything else. The one in Houston is being "sponsored" by the US RLSF, but they are not supplying the money for it. Basically, the researchers and what they would like to do and what they are ABLE to do are two different levels of studies. A proper study takes proper $$$$ and it is certainly not coming from MANY places. Each disease is ranked on whether studies will be performed, and to put it simply, if a pharma company does not think it can make money off a new drug possibility, then there are no $$$. period. So, before you start hurling insults at the people we know best that can help us, or some of the best, think first. We have to have SOMEONE researching, and they are begging for money to study RLS and pregnancy. Makes sense, right? So, while you are entitled to your opinion, and your sources, we are also entitled not to agree with you.

  • Give me a break, everyone on here rants and raves against sleep specialists and you agree with them. You just don't like me so when I'm down on doctors that throw pills at people and shove them out the door then you're insulted.

  • How many dozens of people who have seen multiple sleep doctors/neurologists come on here because their doctors had no answers then we discover they are on an RLS unfriendly drug and giving it up improved their RLS dramatically. Those sleep doctors knew or should have known about those medications yet they didn't know enough about RLS or didn't review the patient's chart such that the connection was made.

    The second half of this string has been deleted because the comments were not supportive or helpful. Kaarina (volunteer)

  • And just look at poor Nick the Turk. Or Raffs. When they're down on sleep doctors then it's ok right Nightdancer. Why don't you tell them you're insulted.

  • I'm fickle. It's just that at this point in time the collective knowledge on the internet is greater than what any given RLS doctor knows - my opinion. However, as research is conducted, and a light bulb goes off in a particular researcher(s)' brain then fickle little me is in love again. What it really boils down to for me is that I don't like people traveling half way around the world to visit a doctor with an outdated website (deleted by kaarina (volunteer) - inappropriate ) - my opinion. And I'm disappointed that the (deleted by kaarina - borderline offensive) who I corresponded with and liked as a person knew very little about RLS by his own admission. If you're conducting a clinical trial about RLS and getting paid well then you should at least bone up about the condition and not simply point to Earley and say "well he knows." The infuser's specialty is anemia and when you have a hammer everything looks like a nail. If he knew that RLS patients have low levels of brain iron then maybe he would have chosen a different iron formula. But he didn't know that fact yet he is the one that chose the formula for the clinical trial

  • There is also information about Estrogen Dominance making RLS worse. Dr. John R. Lee (What Your Doctor May Not Tell You About Menopause) wrote about this, and there are other alternative doctors who treat their RLS patients for estrogen dominance. From what I read too much estrogen depletes or in some way opposes magnesium and B vitamins, two of the things that are needed to help control RLS, the other being iron.

    I know that I have estrogen dominance, as I had a test that showed that to be so. I also know my RLS has gotten more pronounced in the last few years. I have found progesterone cream, rubbed on where the RLS is acting up, stops it in about 5 minutes.

    For the most part, I have been having success with the iron bisglycinate, magnesium, and B vitamins, BUT - here was an accidental experiment GONE WRONG! I was low on my supply of magnesium, and then I was thinking, well, it's the iron that helps the most. So I rationed my few magnesium tabs over several days, then I TOOK NONE. That was the BIG Mistake that showed me just how necessary magnesium is in calming the nerves. For a few nights, my RLS started to be a bit more troublesome, THEN when I took no magnesium - that was the WORST! It came on with a vengeance, all night long, in both legs and one arm. It was terrible! with a Capital T! That was when I realized - it was the lack of magnesium (I also had a twitching eyelid, and muscle cramps -both signs of magnesium deficiency.)

    My feeling is that these things - magnesium, iron and B vitamins (esp. folic acid) - work together for the best. Leave one of them out and the others don't work as well. I may experiment with leaving one of the others out also, to see about this. BUT it is my feeling, that the combination is most helpful.

  • Fascinating, absolutely fascinating. Now I would go the other way. Take the magnesium and NOT the iron. I only take the iron when I have the RLS, which is not every night. I don't think of iron supplementation as particularly healthy, especially in light of my healthy iron stores. I hate to ask you to be a guinea pig like that and of course it is up to you. All I know is next time I have an attack I'm taking about 600mg of the magnesium to see if that stops the RLS instead of the iron.

  • Ye, I will try that - not taking iron. I don't mind being a guinea pig - I do that all the time myself anyway. Esp. when dealing with odd problems and alternative solutions, one must be willing to be a guinea pig.

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