It must be a year since I posted a draft for comment. There have been a few changes so I thought it might be a good time to post this. I know its long but its not a book, just a list of things that have helped some people.
Hi
I assembled this list from reports on the forum and other sources just to put most of it in one place. I think it’s a bit behind and my plan is to update it occasionally to keep it more up to date.
There seems to be a standard routine of treatments that all new victims should follow. If you have had RLS for a long period there might be something here that you haven't tried yet.
This list is an attempt to collect the knowledge of the many contributors to this forum. The points are not necessarily in order but many can be tried at the same time. Each of these points has been reported as helping someone so I hope at least one will help you. This is a pretty long list to post in the forum so I private message it to many people rather than cluttering the forum with repeats of the message.
Sources of information.
irlssg.org International RLS Study group.
rls-uk.org/ The director of the RLS-UK foundation administer this HealthUnlocked forum
I think that as soon as your doctor agrees that you have RLS you should do the following easy things. These are easy compared to taking prescribed drugs with their serious side-effects. See the list below for more details.
• Get ferritin checked and then take action to raise it to 300 if it’s not already higher than that. Ref. para. 5
• Start on a diet and immediately exclude lactose, caffeine, gluten and alcohol. Then follow up the FODMAP diet. Ref. Para. 8
This list includes some of my opinions. I am not qualified to offer any medical advice so this is just my observations and opinions. I have had RLS for about 55 years. It became serious about 12 years ago. The only thing that has really helped me is a FODMAP diet and in addition to the FODMAP diet I exclude lactose, caffeine alcohol and gluten. This works pretty well for me. Unfortunately everyone seems to be a bit different. Read on.
1. Do you have Restless Legs Syndrome or do you have some other medical problem? Check the guide to diagnosis on the RLS-UK website at rls-uk.org/diagnosis/
2. List all the drugs you are taking, whether for RLS or any other reason, and check with rls-uk.org/treatment/ and a couple of smart doctors to see if any of them are likely to be causing the RLS.
3. Some people have tried wearing compression stockings to bed and some say it helps. For $20 its worth trying. . I have read that dancing tights are just as effective but cost around $20 whereas compression stockings cost around $80 (in Australia) I haven’t tried either dance tights or compression socks but I don’t know why not.
4. Drink water or decaffeinated tea and coffee. I have been told by a dietician who specialises in these diets that coffee has a simpler structure than tea so if you like coffee it might be best to just stick with it. A dietician who is familiar with IBS and has some knowledge of RLS recommended 2 litres of water per day. She did not include water in tea or coffee or soft drinks in the 2 litres. . It sounds like water would be best until you prove whether tea or coffee are triggers. Some people say they can drink caffeine up until noon or 4pm or 6pm but unless they have experimentally proved this they have no real idea. If they have proved it then they have no problem - all they have to do is stop caffeine and their RLS has gone. Lucky them!!!
5. Get your ferritin levels and saturation measured. In the past the recommended ferritin level for RLS patients was 100. Recent research has found that some people are helped by raising the level to 100 but there are others who need the level to be 300 to be effective, If your ferritin is less than 300 then ask your doctor for advice on raising it to at least 300. Oral iron probably won’t raise the ferritin to 300 in years so you need an iron infusion. One recognised expert on RLS is Doctor Buchfuhrer in the USA. He wrote a frequently quoted book on RLS management and has been working in the field for many years. I asked him for advice about ferritin levels and this is his reply.
“20Jun18
We have learned a lot about iron absorption and iron therapy for RLS in the past few years.
When we quote the goals for iron therapy, it is based on only 2 studies that showed a benefit from oral iron therapy when the serum ferritin is brought above 50-75. That was the guidelines for those studies and they did not look to see if higher levels brought further relief of RLS symptoms. Furthermore, it is very hard to get serum ferritin levels much above 100 with oral iron therapy.
Now that we have been doing iron infusions for RLS for a few years, we have gained additional knowledge. We find that some patients need to get their ferritin levels above 200-300 in order to drive enough iron into the brain (the best way to find out how much iron gets into the brain would be a spinal tap but that is of course not something we would do very casually or routinely). However, we would recommend keeping the ferritin level no higher than about 350 in order to avoid issues with iron overload which could effect organs like the liver, kidneys and heart. Therefore, an iron infusion with a goal of getting your ferritin between 250-300 could be very helpful. You should also be aware that only certain iron formulations (INFeD and Injectafer) are beneficial for RLS patients.
Ferritin tests can be fairly reproducible (and it is likely not a lab problem that causes variation) but must be done fasting without any excessive iron intake for the previous 24 hours. The other issue is that ferritin is an acute phase reactant so it may stay falsely high for as long as a month after inflammation (such as a bad cold). A low ferritin is always an accurate result while a high level could be falsely high.”
( New Note 14 June18 In Australia one of the biggest pathology companies suggest that normal is between 35 and 500 and it was recently reported on the forum that one patient got relief when her ferriten was above 250 and another said the same when above 300 It would seem that there is a considerable range of Ferriten that is good for you and a fairly high level that is apparently safe. Still get your doctors approval and agreement to monitor you regularly. ) If your ferriten level is below 100 work extra hard to increase it. I have been told that I should eat 1000 to 1500mg of vitamin C WITH the iron tablets. Crunch up the Vitamin C and take the tablets as a mass. The iron should be taken on an empty stomach probably an hour before bed. Many people say that the best form of iron is iron biglycinite, rather than iron sulphate or other iron compound. . I have read that if you are taking iron biglycinate you don't need the vitamin C but I take it anyway. I think Vitamin C is good for you. It is also suggested that your body absorbs iron better if you take twice the dose every second day on an empty stomach. Tablets seem to be a very slow process. The quickest way is to have an iron infusion. I don’t know if there are any reasons why we don’t all get an iron infusion to bring our ferritin level up to see if the RLS goes away.
Another article supporting increases in Ferritin is the following:
“Evidence-based and consensus clinical practice guidelines for the iron treatment of restless legs syndrome/Willis-Ekbom disease in adults and children: an IRLSSG task force report”
Richard P. Allen , Daniel L. Picchietti , Michael Auerbach , Yong Won Cho , James R. Connor , Christopher J. Earley , Diego Garcia-Borreguero , Suresh Kotagal , Mauro Manconi , William Ondo , Jan Ulfberg and John W. Winkelman
Sleep Medicine, 2018-01-01, Volume 41, Pages 27-44, Copyright © 2018 The Authors
The text of this is at:
clinicalkey.com.au/#!/conte...
6. Take Vitamin B12 and Folate. This works for some people. I took them in the morning for about three months. I don’t know if they helped or not. They didn’t eliminate the RLS symptoms occurring at times when I departed from my diet.
7. Try magnesium spray or oil rubbed on your legs. This helps some people I know. I have tried taking Mg supplements Mg Diclycinide I think is recommended. Taking Mg orally used to give me bad RLS but it works for some. I am still experimenting with it for myself. One person in this forum, TSH110, recommends Soligor chelated magnesium (magnesium malate) I must try this but haven’t yet. My wife's endocrinologist said that Magnesium orotate is the best form to use. He says it’s the form of magnesium that is most readily available to your body. I suspect he knows better than me so I am about to change over to that and see if it helps, but I can’t seem to find it on the shelves.
8. Try the FODMAP diet and/or the low chemical diet for 12 weeks to see if you have one or more food intolerances. I found that I was lactose intolerant and just cutting out lactose produced an improvement. You can use almond milk and in Australia you can buy several brands of lactose-free cow's milk. If you decide to try the diet then do it seriously. Keep an accurate food diary. Don’t be one of many people I speak to who say my RLS is killing me but I will not give up garlic or onion to eliminate it. For the period of the diets it is probably worth giving up alcohol as well or restricting it to spirits. I can drink a rum and coke of all things. A caffeine and alcohol mix! I have had two in one night and still slept. I advise you to lay off all alcohol until you prove it doesn’t affect you. Otherwise you will never really know what causes your problem if it is really a food intolerance problem. I strongly recommend you get help from a dietician. Both these diets are elimination diets and the full process is not easy to follow. Search for FODMAP Monash University and Low chemical diet Royal Prince Alfred Hospital Sydney
Another diet that has proved successful for some is a vegan diet. Two people have reported high success with this. A couple of others have said that they have tried diets with no success. You will only know by trying!
I think it’s quite possible that different people will be helped by different diets. I would suggest that you start with the Low FODMAP exclusion diet and also leave out caffeine, alcohol, lactose and gluten. See if the RLS symptoms improve. In my case it took about 12 weeks of the diet before my symptoms disappeared. I suggest you get help from a dietician because it’s a difficult diet to keep track of. Check with your doctor to make sure there is no health reason why you shouldn’t try dieting. That probably applies to any of the diets.
9. Go to bed early. Didn't help me but I have read that it helps others. I have found that being really warm in bed seemed to help. I have a problem with cold feet so I wear slippers in bed and I think I was best when I was just a bit warmer than I was comfortable with. Some nights I dont even kick my slippers off! As usual with RLS there are others who find it best to be cold and have ice baths. You have to experiment but write down what you are doing so you can review it once a week to see if anything is having a positive effect.
10. If you still have RLS symptoms then try the drugs They work for many people for at least a few years. Some for 20 years apparently. I tried these as soon as I found a doctor who believed in RLS and had read about the recommended treatment. (after having RLS for fifty years) After a while the side effects were terrible even though I had a few glorious months of no symptoms. After that it meant trading the enjoyment of my waking life to enjoy being unconscious. Not a worthwhile bargain. The drugs become very complex with interactions and augmentation. There are very knowledgeable people in the forum who understand these drugs and are very happy to offer guidance. If you are already taking medication and want to try the FODMAP diet for example, I don’t know what the doctors would recommend. Most doctors told me the diet would be useless. If it was me then I would go on the diet and simultaneously try to wean of the chemicals the see how things were working after a few months. But I really don’t know so you would need to discuss it with experts.
11. Co Q 10
Barbara-Halverson74 10Dec2017 said
“I used Co Q 10 800 mg in am. Recommended by a doctor but no need for prescription. I no longer have to take it.”
I tried this for a about 4 weeks and I found no effect for me but it helped Barbara and its cheap and apparently safe so give it a try and see if it helps you. As usual check with your doctor. She will probably say that of course it won’t do any good because “Big Pharma” can’t make a profit. Just ask if it will do any harm.
12. Tens Machine Some people have had success with a Tens machine. These might be hired in the UK but I don’t know about other places. ( In the UK Boots was suggested as a source.) (Mentioned by Hooc about 16Dec17 and others)
13. Restiffic Footwraps. Apparently help some people but not many. Worth following up. Go to healthunlocked.com/rlsuk/po... for more info. Probably belongs with tight stockings. Very pricy at about GBP200 but they apparently offer a good return policy if ineffective and actually honour it! Maybe we should all try it under those conditions.
14. Pycnogenol
AlanSun found that this works for him. He refers to the increased blood flow in the legs as a consequence of taking Pycnogenol but there doesn’t seem to be any research that indicates RLS is caused by the blood supply to the affected limbs. There might be other effects of Pycnogenol that are related to RLS. If it works for Alan then it probably works for some others - maybe even all others.
(From AlanSun about 26Dec2017
“I struggled for years with RLS then discovered that 100mg pycnogenol (pine bark extract) does it for me. There is good evidence of its effects on blood flow to the legs, so it’s not just a placebo effect. I hope it works for you.”
Later Alan said that you can get pycnogenol from justvitamins.co.uk.)
15 Cannabis Several people have said they have benefited by this Usually in tablet form but sometimes by smoking it. I am a bit nervous about the side effects in the longer term and the legality of possession of it. Of course the side effects of the legal RLS drugs can be pretty devastating as well so it might be six of one and a half dozen of the other! If you want to investigate Cannabis then just type it into the forum’s search box and you will find many references. M_argi reports getting relief by rubbing cannabis butter on her legs . More people should try it.
16 Arthrocann This is a quote from another forum member “A few people have tried this with some immediate relief. Having come out the other side after augmentation (from praximexole) , I tried most of the suggestions given by all you helpful people and take hemp oil, magnesium spray and Vit B12, but I have also found arthrocann to be very helpful if RLS isn't too severe. when I wake up with it, I just rub some of this on my leg, it gives a pleasant tingly warm feel, very soothing after the RLS and I can then get back to sleep. I bought it on Amazon about £17.”
17. Probiotics and prebiotics
Recommended by Geoff and others
Probiotics are the “good” bacteria in our gut somewhere. We can kill them off as a side effect of all sorts of things including taking antibiotics. Prebiotics is (I think) food for the good bacteria in our gut to ensure they are healthy.
I am on a low FODMAP diet. Prebiotic is Fermentable olio saccharide Unfortunately the first two letters of the FODMAP acronym stand for the same stuff so I don’t think it’s a good idea to take prebiotics if you are following the FODMAP diet.
I am taking probiotics and drinking Yakult daily. I think I might be feeling a bit better but I have to give up some of my diet to really know. So I have been on just the probiotics for about 2 weeks and I will stay on them for a month before challenging my body by eating something not allowed by the diet. I will report back on the result. What harm can some probiotics do? I suggest anyone with RLS gives this a try.
18 Relaxis
This is a device developed by, or in consultation with, Docter Buchfuhrer
Information can be found here: myrelaxis.com/physicians/rl...
The following is a quote from one person with experience with this gadget.
“If this is about the Relaxis pad- then there have been a number of posts about it- generally that it works for many people but is very expensive.
Dr B gives it the thumbs up.
It won't do you any harm but may aggravate your bank balance somewhat. 😆
You can use the search button under 'more' at top of the page.”
19 Exercise
Several people have had success with exercise but the variety of excercises and the scattered results make it hard to summarise here. Some people have found that walking or running for exercise helps but an equal number of other people have found it makes their RLS worse. I think you just have to try it. In the future I will try to list successful excercises but in the meantime I suggest that you search the forum and choose what looks good to you and try them out.
20 Kratom
Kratom is a tree from SE Asia. Its leaves contain substances that are psychoactive and have a eputation for pain relief. Many people claim it has helped them with their symptoms of RLS. It is illegal in Australia so I haven’t tried it. You can get information about it in Wikipedia and doing a search on the Forum.
21 Potassium Citrate
There was a report that a group of 68 RLS patients took potassium citrate every day and at the end of 45 days 100% no longer had any symptoms. For some reason the work wasn’t followed up as far as I know. I am testing this at the moment. BUT be careful there are warnings that Potassium Citrate can be DANGEROUS to your heart so don’t touch it without getting approval from your medical advisor, GP or specialist. I should have news about 10 August. Of course if it doesn’t work for me it might still work for everyone else!! But be cautious. I’ll report to the forum
12 July 18 The current status is that I have been taking one potassium citrate tablet every morning, with food, for 23 days. I am sure that I am sleeping better. In the last 10 nights I have only had one bout of restless legs and that didn't last very long. I am not yet ready to call it convincing but it's looking good. Perhaps it’s just a placebo effect but with one test article (me) it's hard to do a randomised blind test!!!
I will be interested to see if this list helps
Cheers
Graham
FINALLY found a scientific study that supports my theory about Brain Iron and Serum Iron. Finally!!!
My Efforts to Educate the Scientific Community
Possible high ferritin from Covid leading to improvement of RLS symptoms for a while AFTER Covid (not during)
Iron article
Dr. B on Iron Infusions
