Restless Legs

[blueeyes5262]

Yes,it needs to be studied,way more than it is!

I feel like im going crazy some nights when no relief is in sight, and it's getting worse!!

[Graham3196]

Hi there might be something on this list that will help you.

Sent 24Nov19

I hope something in the following list might help you. All have been claimed to help some people. I have been saved by the FODMAP diet and avoiding lactose and other things. 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.

I am 73 years old and have had RLS forever. 10 or 15 years ago it became so bad that I was lucky to get 2 hours sleep a night, 7 nights a week. I was given drugs and they had unacceptable side effects. I experimented with lots of things and the thing that has helped me more than anything else so far is the FODMAP diet (see below)

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. From time to time I post it to the forum just to make it available to everyone. I think it’s a good idea to get a few reviews from other people.

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 At the same time as you get pathology to measure the ferritin get magnesium,zinc and the potassium levels measured. See paragraph on zinc in the list below. The iron infusion has only helped me marginally but my daughter had immediate and complete relief from an iron infusion. She was anemic so perhaps it was more effective for her.

• Quite a few people report finding their magnesium was deficient and when they raised this their RLS went away or was decreased significantly/ The same with potassium but potassium is potentially dangerous so you MUST check this with your GP before you try to raise it too much. Start on a diet and immediately exclude lactose, caffeine, gluten and alcohol. Then follow up the FODMAP diet. Ref. Para. 8 My RLS was triggered by a whole host of foods - lactose, gluten, wheat, caffeine and alcohol and lots of others.

• Note treatment for RLS is awash with anomalies. I have to avoid caffeine but other people on the forum report that caffeine is good for them and relieves their RLS. Many things have to be tried to find your individual response. For many people the RLS is related to what foods you eat. This is why it’s good to start with an exclusion diet where you eat a very limited number of foods and make sure they are foods that have a reputation of being tolerated by most people.

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 things 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. I thought I started to benefit from the iron infusion but it has taken some time and might be wishful thinking. Some people get almost immediate relief. 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 and supplements you are taking for anything,

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. This includes things like anti-acids, antihistamines, and many ordinary medicines.

3. Compression Stockings

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 have tried dance tights but I found them uncomfortable to sleep in. They also tore on the second night.

About 18Nov18 Smitty7 said “I have had tremendous success with compression socks. I wear regular compression socks during the day and thigh high compression stockings at night. I also take CBD oil, magnesium and other electrolytes, eat low carb diet, and.0625 mg Mirapex. I just started 100 mg Gabapentin...which I may discontinue. Of all the above, compression socks and stockings made the biggest impact.”

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!!!

One of my recent specialists told me that there is some residual caffeine in decaf tea and coffee and she said I should drink pure water. I have started drinking fairly hot water and after a couple of days I have lost the need for tea or coffee flavour. I usually drink decaf coffee at restaurants because I embarrass easily but some places are happy to sell me a cup of hot water, usually free. (I have found that I drift back to “Needing” a cup of tea a few times a day, maybe 10 times. When I realise (that means I stop lying to myself) I bring it back to zero and start again. It’s just habit but it dies hard.)

5. Ferritin Level and saturation

This is a big section because it seems to be very important. Read it all because it refers to an 80% success rate and that’s hard to beat.

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, probably 350 should be the target. The idea of raising the ferritin level is because the iron we RLS patients are lacking is iron in the brain. Experiments have shown that we can have a reasonable level of ferritin in the blood but the amount that gets through to the brain is lower than other people. So the solution sounds a bit crude but we try to raise the level in the blood and hope that forces more into the brain. Some doctors don't know about the importance of ferritin and many of them don't want to know. I have had to contact 5 doctors to find one who would give me a referral for an iron infusion. It’s now been done and I am waiting to see the result. Blood analysis about 20december18 showed my ferritin level to be 343 micro grams per litre so the infusion was successful and now I am hoping that I am one of the lucky ones. (Note recent work in Spain indicates that you might have plenty of ferritin in your blood but NONE (or very little) in your brain, The Spanish doctor is using a new method to measure the iron in the brain fluids. (trans cranial ultrasound) The Spanish doctor also has developed a method of raising the brain fluid ferritin by a special iron infusion. Doctor Diego García-Borreguero Díaz-Varela is the researcher.

Oral iron probably won’t raise the ferritin to 300 in years and 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. Make sure your doctor understands this point.

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.” (Graham’s note: After inflammation the high ferritin measurement is an accurate measurement of ferritin. The important issue is that the high ferritin does not represent your normal ferritin level so you might think everything is all right when you are actually low.)

Note that in a later email conv with LanaCSR Doctor Buchfuhrer said the following about an older infusion product. “Here is Dr. B's reply: Venofer does not work as well as Injectafer which is why it is necessary to give up to 5 or more infusions on a weekly basis. However, you should get a similar response after the 5 infusions as you would with one Injectafer infusion (which is obviously much less bothersome).”

( 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 biglycinate, 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, other than cost, 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...

AND another note from Doctor Buchfuhrer. This is what he said about mid 2016. This is interesting because it gives some details of success rate etc.

Dr. Buchfuhrer on Iron Infusions

Hidden• In the forum in a post by “Hidden”

About mid 2016

video.google.com/video play?docid=-7766971241156535124&hl=en

Within the above transcript is the following direct quote from Dr. B. His word is gospel and I hope you all feel the same:

"What the guys at Hopkins did, they gave iron intravenously usually about 2 or 3 or 4 series of infusions of this iron, and they got the levels around 200 well, low and behold, about 80+% of the patients all of the sudden had their RLS symptoms completely vanish. They could drop all their medication and these were severe patients for the most part. They dropped all their medications; they felt great. They said 'my RLS is cured.' Anyway, very interestingly, 6 months to maybe 2 years later, these patients started calling back saying, 'my RLS is coming back, what's going on?' So they brought them back to Hopkins and rechecked their serum ferritin and their CSF ferritin, the ferritins around their brain and low and behold these guys were again low on ferritin. Now typically when we get someone with iron deficiency, anemia or not, and we tank them up full of iron, and typically this will be someone who has like a bleeding ulcer or women with heavy menstrual period or God knows what, who get low on iron, once we tank them up unless they bleed again, they're good for life. So this was very perplexing. And now what we believe is that the REAL defect in restless leg syndrome May in fact be a leeching out of iron faster than normal. We all lose a little iron every day but we get it back in our diet, very, very easily. We feel that restless legs patients are losing it much faster, so the normal diet doesn't come close to replacing it. And at least the guys at Hopkins postulate that the genetic defect may be something to do with iron metabolism and that RLS is only secondary to that. "

My Summary of the Ferritin Situation

I am not an expert on this but from what I have heard it seems there are many people who have RLS and low ferritin. The ferritin is essential to supply the brain with iron. If you have low iron there is an increased risk of RLS and probably other ailments. To reach the brain the ferritin has to penetrate the blood brain barrier which is designed to protect the brain from things in the blood that might harm it. The concentration of ferritin in your blood is important because it is one factor that controls the rate of supply of iron to the brain. Another factor is apparently the porosity of your individual blood brain barrier to ferritin. Some people apparently have a porous blood brain barrier while others have less penetrable blood brain barriers. Low blood ferritin is defined as being less than 30 by some medical experts, less than 100 by other medical experts and less than about 300 by other experts. At the extreme upper end there are people for whom the blood brain barrier appears to not allow enough iron to the brain at any blood concentration that is safe for the rest of your body. This is based on some measurements of iron in the brain but these measurements use very intrusive techniques or postmortem measurement.

In the USA there are doctors such as Doctor Buchfuhrer who seems to work in close contact with the experts at Johns Hopkins Hospital who have studied this. Their conclusion (at the moment ) is that the first line of attack is to raise the patients blood ferritin to about 350 to see if this cures the RLS by allowing the brain to work properly.

There is a report in this forum that a researcher in Spain has developed a technique to measure the iron that is in the brain where the measurement really matters. I don't know details of this but it sounds like a very promising advance in technique that might lead to significant advances in treatment.

This might be all wrong but its the best I can figure out so far.

Measuring Ferritin Level

I am still trying to find out more about this but I have been talking to a scientist at a Pathology lab. The important thing she said was that you should always get your ferritin level measured by the same laboratory. (This is because there are several methods of measuring ferritin and which method is used by a laboratory depends on the test machine they buy. The results are not consistent between methods. She says that ferritin is a very difficult thing to measure and there has been years of work focussed on the low ferritin range because most interest is in anaemia but the high end has not been subjected to the same attention. It is quite possible for measurements at the top of the range to vary by 30% from one method to another. I am trying to learn more but the important thing is to make sure you use the same lab so you can compare one result with the next and know how its going.)

5A How do I get an iron infusion???

In some parts of the world an iron infusion for RLS is hard to get. This is because doctors don’t have a clear instruction that intra venous iron infusion is a legitimate treatment. Doctors mumble about risk and complications with the infusion process but they are generally no worse than any other skin penetrating procedure. EXCEPT for very rare people who might have a bad reaction to the iron and suffer anaphylactic shock, potentially fatal. One case per million applications. This is why it’s recommended that you get it done in a hospital where they can treat the shock as “just another emergency” and usually save your life. A small chance of it happening but a serious outcome if it does.

The reason it’s hard to get in Australia is because iron infusion is approved by some authority for use against anaemia but not for RLS. I don’t know why except that there are not many voices promoting it for RLS. This apparently makes it illegal for an Australian public hospital to provide the service for RLS patients. I might have some information soon for Australia but so far I have found the following places where the treatment is available for RLS patients.

In Australia I had to visit 5 GPs to get one who rang around specialists until she found one willing to provide an iron infusion for an RLS patient. The price was about AUD650 but I only had to pay my health insurance excess of AUD500, The excess is payable once per financial year so if I need a second dose it should not cost me anything. Once I found the right specialist it took about a week to do the job. I will get a blood test about 20December 18 to make sure my ferritin level is as high as I want it. It apparently takes some time to settle to a representative reading.

UK

The iron Clinic Deeperside got a quote from this company who are IV iron infusion specialists in the UK. theironclinic.com/

The Iron Clinic 60 Harley Street

Second Floor London. W1G 7HA

T 020 3875 8171 E [e-mail]

The Iron Clinic Cambridge Cambridge Nuffield Hospital

4, Trumpington Road Cambridge CB2 8AF

T 01223 303336 E [e-mail]

The Iron Clinic Guildford Elmdon House,

116 London Road, Guildford, Surrey, GU1 1TN.

T 020 3875 8171 E [e-mail]

USA

I think it might be readily available in the USA. I have seen references to Johns Hopkins clinic in Baltimore, M,D. and Doctor Buchfuhrer in Stanford Los Angeles. Address: MC 5730, 450 Broadway, Redwood City, CA 94063, USA Phone: [phone] His website is rlshelp.org and you can email him at [e-mail].

Dr John Winkleman at Massachusetts General Hospital Doctor Winklemen is author of at least one paper supporting iron infusion. Doctor Winkleman is an expert at RLS and an advocate of the use of opioids. Currently asking for participants in trials to verify the use of opioids for RLS I suggest that participation is worthwhile for the greater good.

Cost of Iron Infusion

Someone in Australia AUD240 at a private hospital

My quote in Australia AUD100 plus about AUD350 for the iron solution, at a GP clinic set up for the task and equipped to handle emergencies such as anaphylactic shock.

My actual cost in Australia AUD650 at a private hospital,

My last plan was an interview and then treatment at a major teaching hospital (Monash in Melbourne) All on the poor old taxpayer! That is Free If I’m lucky. In fact it cost me AUD500 with my health insurance picking up the rest which was about another $100 The $500 is my annual insurance excess so if I need a follow up before the end of this financial year (June 2019) then it will be free.

TATTiana in reply to Graham3196

Hi Graham My infusion cost around £600 : £250 for the (five minute) consultation and £350 for the infusion itself. The easiest place for me to go was Harley Street in London (a famous street of private, expensive practice!) but it is not widely available privately in the UK. If it had resolved my RLS it would have been worth every penny, I am still glad I did it as it has speeded up my treatment once we were able to dismiss that as the absolute cause.

Deeperside wrote: Hi, I contacted the iron clinic in London and a 500mg infusion is £370 plus £200 consultation, and a full infusion costs £560 plus the consultation. It’s expensive, and Travelling costs also come into the equation so I’d likely be looking at nearly £900 I’d guess coming from Scotland.

5B Breaking News Ferritin and your brain. GOOD news

It is thought that the problem with many/most RLS patients is not enough iron in the brain. Raising the blood ferritin level is thought to increase the amount of iron that gets through the blood brain barrier. I think this is supported by both post mortem sampling of the brain and spinal taps. A doctor in Spain has developed a method of measuring iron in the brain with ultrasound that does away with risky and painful spinal taps and the undesirable post mortem requirement. (Apparently no one would do spinal taps just for this.) Called “ultrasound transcranial.” It has been used to show that some people with RLS have no iron in their brain, in some cases despite having an abnormally high ferritin level in their blood. A normal iron infusion doesn’t help some people because the blood-brain-barrier stops the iron reaching the brain. The Spanish doctor has developed a special iron infusion that gets iron into the brains of these people. That’s a rough summary. To learn more search the forum for a post by Chilandres about 20Jan19. The forum is now waiting for more information about this. The Spanish doctor is Dr. Garcia-Borreguero. Read the forum regularly to keep up with this story that might be life changing for some of us.

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. Magnesium

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.

Feb2019 Still haven’t found the Magnesium Orotate so I am relying on Magnesium Biglycinate , two tablets per day. These don’t seem to aggravate the RLS and they help by suppressing cramps that used to wake me.

7a Zinc

When you are having blood tests ask the doctor to include a test for zinc. Warfield reported in the forum ( about 8 Mar 2019) that his RLS was greatly relieved by correcting a zinc deficiency. It seems rare but it worked for one person.

8. Diet

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

I have found it best to try to eat a variety of foods. For example early in my fight with RLS I was told that bananas were safe. So I ate about 5 a day and it did me no good although they are very convenient. Dietician said I was silly. So now it’s one a day or two if I take a picnic lunch.

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.

I only have personal experience of the FODMAP diet. I started out by trying a gluten free diet and being encouraged to find that this significantly reduced my RLS. I then investigated other factors and came across the FODMAP diet. The FODMAP diet is a process where you start with an exclusion diet and then reintroduce foods in a systematic way to discover what foods are causing you a problem. The exclusion diet allows you to eat foods that have been found very unlikely not to be tolerated. In theory you stay on this for something like 3 weeks until your symptoms cease. In my case this was about 12 weeks. FODMAPs are a collection of about 6 food groups that are associated and can cause intolerance problems. So you introduce the fodmaps one group at the time and you can detect which group gives you RLS. If you're lucky you will find only one group affects you - if you're unlucky you find that all FODMAPS affect you. In my case I have been a bit unlucky but I am quite happy. There might be other things so there is a "low chemical" version of the FODMAP diet where you introduce various chemical groups to see which ones affect you. The chemicals are naturally occurring chemicals - not manmade. EG bananas – slightly green bananas are OK but as they ripen they produce a chemical so you might find you can’t eat them.

Note that it's not a clear cut yes or no to each introduction of food. There is a threshold effect so there is possibly an amount of each food that you can tolerate. In me this can be quite pronounced as for example with lactose in milk. After excluding strictly I drank a half cup of milk - no problem ; a full cup - no problem; a cup and a half and bingo RLS with a vengance I crossed the line. I suspect that if I had a cup per day for three days I would have had RLS. I can't be bothered testing this. There is also a delay effect. Before the diet became a way of life if I drank milk today I might not have RLS tonight but tomorrow night and the following night I would have a problem. You can see how the thresholds and delayed responses can make it difficult to trace the RLS that kept you awake last night back to something in your food diary unless you are very systematic.

I have finished up currently on the FODMAP exclusion diet and also excluding lactose , caffeine, gluten and alcohol. There seems to be some complication with alcohol that I haven't bothered to sort out yet. I can drink a rum and coke but wine or whiskey can upset me. There might be chemicals in some drinks.

Finally

• get help from a dietician to apply the diet and reintroduction of foods so you do it right the first time. Every time you make a mistake means you have to live with RLS for another few days or a week.

• Get the Monash FODMAP app for your smart phone. Testing food for FODMAPs is expensive and when I started I could eat rice and a few other things so I felt I was sacrificing an important part of life but now its not a big deal. Now there are lots of things on the diet and I am quite happily living on it.

• If it really doesn't work the next try I would suggest would be the vegan diet. It worked for Raffs on this forum. (Please don't tell me you have always been a vegan)

• Be prepared for your GP and your specialist to rubbish the whole idea that diet affects RLS. Just pretend we know better. If its just a placebo effect and they can prove it then please don't tell me.

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. Drugs

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 beco

[DicCarlson in reply to Graham3196]

Well, that's it in a nutshell! Excellent write-up!

[ScribblerCLT in reply to DicCarlson]

Ditto!

[davidadill]

Try codeine. For 300 years that has been the most effective treatment for RLS. Start with 16 mg, but do not expect perfect results until the second night. Over 6-8 weeks you will need to increase the dose to retain efficacy. Once you hit 24 mg and that no longer works, stop using it for 2 weeks and then 16 mg will once again be effective. Never take codeine more than once per day. I take it with gabapentin and ropinirole. My doctor said to take those 2 drugs 90 minutes before bedtime, but that is a mistake since codeine is effective within a few minutes. So I take them just before bedtime so that I can be more likely to be able to sleep 6-8 hours before my legs bother me. I also walk for 10-20 minutes just before bedtime and after brushing my teeth lift my knee up as far as possible 35 times with each leg. If I am awakened during the night, I spend a little over a minute doing the 35 knee lifts with each leg and 90% of the time I can go back to sleep for 2 hours or more.

[KickininAz]

Me too....

[Hidden]

Hi blue eyes. Agree with you about certain drugs being administered for the symptoms of restless legs. There may be many underlying reasons for restless legs including diabetes

and irritable bowel syndrome. Other causes as previously mentioned in detail may be iron, magnesium potassium and zinc especially vitamin d in synergy with vitamin K. Some people can be helped by vitamin and iron supplements with vitamin c.

The reason why the fodmap might help with some is from an increase in dairy, which contains vitamin d.

However other tests which may help are food intolerance tests which can slowly work on the colon, and brain to block absorption of essential minerals and elements such as calcium vitamin d and iron.

Thyroid, tests may indicate low ferritin and iron absorption. Thyroid hormone deficiency can affect your muscular skeletal system skin and adrenal glands. B12 deficiency with low folates, again may be signs of a deficiency where you are getting signs of a type of blood abnormality with muscular problems.( Pernicious anaemia)Type 2 diabetes can also give muscle problems.

Would be interested to know what tests you have had as a full range of tests this may indicate other reasons for the restless leg syndrome.

Autoimmune disease is slowly being recognised as being part of restless leg syndrome. The drugs you are taking can be researched on Uk Yellow Card scheme for side effects affecting your brain and muscles.

Ropinerole and Gabepentin may be listed with side effects affecting all parts of the body, and may be toxic . drugs.com has alphabetical lists of drugs with side effects. Patient leaflets can be downloaded by name of drug. Not everybody has side effects such as these but it is interesting to find out where you stand.

yellowcard.mhra.gov.uk/IDAP

(drug profile analysis tab) - no personal details needed to bring up detailed graphs of age,gender and level of seriousness of side effects from alphabetical index of drugs.