A Procedure for RLS

Some time ago there was a suggestion that a flow chart of what to do if you think you have RLS was proposed........I felt that this would be a mammoth effort to write initially and then to maintain. However I thought some more and I offer a starting point which is just a simple list of actions in the order we might agree they should be done. A doctor might think that we are a bit precocious telling his profession what to do but I think we all know that most doctors are working too hard on common ailments to be able to spend the time required keeping up with some rare condition like ours. I suggest that perhaps this map could be pinned to the top of this topic and then we might all have our comments on what actions are proposed and what order a new sufferer should do them in. I have no idea how we get a consensus if we disagree but there is no reason why we can't say "there are two things you can do next and we are not sure so its up to you (new RLS victim) to select one or the other."

I am willing to try to maintain the list but I dont know enough to contribute much to the content. ( Except to flog the diet!) I am a bit busy at the moment so I might get a few days behind at times. There is also no reason why anyone else cant make changes, like a wiki. I think it would be better if we had an "agreed version" pinned at the top of this topic and relied on the moderator to pin a new version up when we "sort of " agree to a change. We dont want to get too formal or we will have to appoint a committee and several sub-committees to vary the punctuation.

I think we want to use it as a guide to refer new comers to so they can understand the direction things take rather than as a prescription for living with our monster.

I have put references into the text rather than a list of footnotes.

Please check any reference to a vitamin or supplement to make sure I have them correct.

I present Issue 1, draft 0

A proposed map of actions to take if you think you have RLS Draft 0 15 June 2017

1. Do your symptoms match the RLS criteria? Ref RLS.org at rls.org/understanding-rls/s... Note that some participants on the forum have RLS like symptoms on other parts of their body such as arms and torso. This is assumed to be just the same condition as RLS If you have these broader symptoms you are most welcome to participate in this forum in the hope that you might know a few tricks to teach us or that you might find some information here that helps you.

2. Write out a list of all the drugs and medicines and supplements that you are currently taking. For each drug write down the dose, what time of day, how many months/years you have been using this drug. You can check the list against a list of drugs you need to avoid at (I think RLS.org) Drugs you are taking for other medical conditions can trigger RLS or make it much worse.

3. Try the simple things that some people say work for them. There seem to be 100 treatments but possibly only one of them will work for you. Start a food diary. List every food and drug that goes into your mouth. This might require an expert to analyse later because your RLS triggers might be in several foods for which you may not see any connection. If you start now you will have plenty of data for the expert to look at.

4. There are two types of treatment. One group is something you do when you are awake and suffering from RLS and the other is the things you can do to prevent the RLS symptoms from occurring any night in the long term.

4.1. Immediate alleviation of symptoms.

4.1.1. Getting up and walking around the house, cinema or aeroplane.

4.1.2. Putting your feet/legs in a cool bath or an ice bath.

4.1.3. Rubbing your affected parts with magnesium oil

4.1.4. Keeping warm Apparently contradictory to ice baths but some people say it has helped them.

4.1.5. Taking Iron biglysinite. Take on an empty stomach. Dose? One 45mg tablet each night?

5. Long Term Avoidance of Symptoms

5.1. Food. Start now on a detailed and accurate food diary. Record everything you eat or drug you take and the times you get RLS symptoms appearing. This is difficult but might be crucial in finding a trigger for your personal breed of RLS. This will be useful later if you need to try a particular diet.

5.2. Schedule exercise. I had less RLS when I walked 2 kilometres during the day. It didn’t work every day but gave some welcome relief. Others have reported similar relief.

5.3. Try to go to bed early. It is suggested that RLS symptoms are worse when you get tired. The truth of this is hard to establish because RLS people are usually tired all the time.

5.4. Iron get your serum ferriten iron measured Demand (nicely) a ferriten iron measurement from your doctor on the first visit where you discuss RLS. Ferriten can be from 20 (units?) per 1000. Too low and you need a supplement Too high and you might have a condition called xxxxxxxxxxx in which case you MUST NOT take an iron supplement. Recommended level for ferriten iron for RLS people is greater than 100 and less than 300(?????) (Approximately). If the Ferriten level doesn’t increase by taking supplements then try taking the Iron Biglysinate every second night. If this doesn’t work consider an iron infusion - discuss with an expert.

5.5. Possible vitamin B12 deficiency. Take one tablet each of Vitamin B12 and Folate per day Must be methyl based B12 I presume there is a test to determine if you are deficient in B12 but I don’t know the details and I don’t know if there are any undesirable side effects from just taking the supplements and seeing if there is an improvement.

5.6. Go on a FODMAP diet. Developed by Monash University, Australia, and adopted world wide for IBS. It has also been found to provide somewhere between 0% and 100% effective relief for RLS. It might help as many as 50% of people, which is pretty good.

5.7. If the FODMAP diet is not at all effective or not completely effective try another exclusion diet, called the Low Chemical Diet, developed by The Royal Prince Alfred Hospital in Sydney, Australia. This diet tries to find different types of intolerance s than the FODMAP diet. I got about 70% relief from the FODMAP diet and the low chemical diet gave me close to 100%. Not as widely known as the FODMAP diet but it has been known to help some RLS People

5.8. Try to re arrange your day to allow you to sleep until midday if you have not fallen asleep until very late. Not possible if you are earning a living by normal means but perhaps move to night-shift????? Not sure about this one. For some there is nothing you can do at night because the RLS won’t allow you to sit still or concentrate so it can be a bit useless.

6. Read up in this forum and RLS.org all about augmentation.

7. Don’t believe them who say “it’s a mental condition” Remember there are lots of cranks around who say that cancer is a mental condition. Do you know of any shrink who has cured a broken leg or the black plague by saying “Just a dream, you’ll get over it”?

8. Drugs

8.1. I don’t know much about the drugs used for RLS. In my case I had immediate reactions to them that made them impractical. From what I have read drugs appear to be the first response of most doctors, GPs and specialists. I see drugs generally divided into three groups Dopamine agonists, opiates and Marijuana based. These all might have long term side effects that make them unusable for some people. Apparently some people can use them to effectively control their RLS for ever, while others develop side effects after a short time. There is apparently no way to predetermine which group you are in. So are there any statistics to show that there is a large fraction of patients who are effectively treated forever with drugs? If the probability of having a problem is small then the risk of crippling side effects might be acceptable. Mild side effects that might still make life a misery may be enough to justify rejecting drugs as a possible solution. If we are going to try the drugs then the question is which ones do we try first? Are there any we would suggest should not be used because of their unpleasant side effects or addiction?

9. What order do we suggest the doctor should prescribe the drugs that are available? We see many doctors having trouble doing this correctly so we may as well have an opinion and make a suggestion if we find common ideas among the forum contributors.

9.1. Try drug #1

9.2. Try Drug #2

8 Replies

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  • First of all doctors only diagnose thing that the Medical Society or state run department recognizes as a condition or disease. Yhey only prescribe a med approved by one of the recognized protocols, so that is why you see so many people doctor shopping.

    Second this is not a rare condition. Ten Percent of the world's population has some version of RLS. Certain groups are almost 100% sure to have it. Even if you think you are not part of one of them, if you trace your ancestry you will find a connection to the source. the 5 groups were isolated for hundreds of years. The groups are Caguns, French Canadians, Icelanders,Appalahians, and Eastern European Jews.

    Each of the groups are able to trace ancestry back to an Eastern European Jewish Woman.

  • That Eastern European Jewish Woman must have done nothing but shag and have babies :)

  • This is very helpful!!!

  • That is a loooooong list, and this the group for the RLS-UK foundation. Lots of people from the US here, too, BUT it is maintained by the RLS-UK. If , as you sate, you do not know much about the drugs that are used for RLS, then this would be an effort in futility. The RLSUK has a web site, you listed the US RLS Foundation, and there is tons of info. The list you have is soooooo long, and I appreciate the thought that went into it, BUT will be extremely overwhelming for a new person to even try and follow it. Newbies join when they are desperate, usually. And, the fodmap diet is given to a lot of interpretation. As much as you push it, that is all you really are up on. One has to be versed in all things to maintain a list like that. The director of the RLS-UK foundation and 1 person are the admins here. If you are thinking about something like this, they are the ones to talk to. My opinion , and I manage several groups for RLS, is that this is too much too fast, and we have web sites to send people to, and lots can answer questions here also. The diet thing is only good for a few people, and it takes up a lot of space on your list, since it is all you post about. My suggestion is to learn all you can on RLS, and make it as correct as possible and FACTUAL.

  • I reread the paragraph about drugs, and there is a LOT of info missing, so if you were to maintain a list like this, proven facts are needed, it would be a TON of work for someone to help you with this, and it needs a lot of work. Half of it is speculation, suggestions, which we all need, BUT this is not something that is easily done. I know after managing groups for 23 years, and the "list" would be an ever changing document. If you do not know ab out meds, then it is not feasible for you to maintain this. Constructive criticism. :)

  • The web site irlssg.org is a great web site to go to. It is the International RLS Study Group, made up of international RLS experts and specialists. They have the official diagnostic criteria on there and they are the ones who set the criteria globally.

  • Great idea Graham- and very logical and progressive. Hopefully it will help some people. Certainly a lot of potential in the idea.

    Thanks.

  • A flow diagram is a brilliant idea and I'm amazed we don't have one! Each time a newbie comes on here we go through the same procedure advising what to do first, second, etc according to the info submitted. A basic flow diagram would ask the questions in an order and is basically what the doctors try to do. E.g.

    What is ferritin level? If <100 try..., if>100 ...

    What drugs are you taking? If DA what dose? If >....

    I believe a simple flow diagram what be an enormous help to our experts, medical profession and for self help.

    As an engineer it is what I have used daily for problem solving.

    Any more thoughts?

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