Revised version of the list of things... - Restless Legs Syn...

Restless Legs Syndrome

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Revised version of the list of things to try.

Graham3196 profile image
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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

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Gmc54 profile image
Gmc54

It will have taken you a lot of time to create this list, and it is much appreciated. Thank you.

Gmc54 profile image
Gmc54

youtu.be/QAoq14NlDQc Have you watched this video Graham? He says there is no way you can get enough potassium from the tablets, you need the potassium citrate powder. I have some, unfortunately it doesn’t seem to be working for me, but it might for you or other rls sufferers.

Graham3196 profile image
Graham3196 in reply to Gmc54

Thanks. That's an interesting video. I am worried about the advice because of the response I got to my request to purchase potassium citrate. Our local medical profession seems very concerned about the effect of potassium on other organs. In particular the heart but also the liver and kidney. I hope to be seeing a cardiologist in the next month so I will ask for an opinion. Meanwhile it would be good if anyone else who is visiting a cardiologist or kidney or liver person can ask for an opinion

Part of the problem appears to be that the body is not good at expelling excess potassium so it builds to damaging levels if we don't use it. I don't know if this means regular potassium blood tests or what it means except be careful.

The manufacturer says on their website urocit-k.com/

"It is important to tell your doctor about all your medical conditions and all medicines that you take. This may reduce the risk of serious side effects. Certain medicines can interact with Urocit-K and irritate your stomach and intestines. If you experience severe vomiting, abdominal pain, black, tarry stools, or other signs of intestinal bleeding, stop taking Urocit-K and see your doctor immediately.

Other drugs or medical conditions can increase the levels of potassium in your blood, which can lead to cardiac arrest or death. These serious and potentially fatal reactions can occur rapidly with no noticeable symptoms."

ALSO NOTE that the dosage for some products are in mEq units which are NOT the same as mg (milliequivalents against milligrams) The urocit-K I am taking are 1080mg or 10mEq A big difference.

Cheers

Graham

Madlegs1 profile image
Madlegs1

Thanks-- very comprehensive.

LotteM profile image
LotteM

Well done, Graham!

I especially like the reply to you re ferritin from Dr Buchfuhrer.

Graham3196 profile image
Graham3196 in reply to LotteM

Isn't it great to find a doctor who says "yeah we got it a bit wrong, we are always learning, so here's our best thoughts now". Refreshing.

LoisTonya profile image
LoisTonya

Hi Graham

One thing that stands out, for me, is your statement that ferritin can stay falsely high after an infection. Twice, when I’ve been ill, my rls has disappeared. I mentioned it on this forum and some others had had the same experience.

in reply to LoisTonya

I've mentioned this improvement while or after an illness too. I so wish someone would research this for us. As far as I understand this rise in Ferritin which eventually goes down again is due to some sort of inflammatory response. I think the other thing about it is a warning that if your Ferritin measures within the good range for RLS but you've recently had an infection you should have it measured again in a few weeks as it may be falsely high and you could still be short of iron. It's all very complicated!

LoisTonya profile image
LoisTonya in reply to

Hi Alison,

. When I had a blood test for something else the doctor said everything was fine - there was some inflammation but he wasn’t worried about it. Then someone posted that all rls is due to inflammation so I went on an anti inflammation diet - goats milk, carrot juice etc.

From time to time there is some improvement and I attribute it to whatever I’ve been trying at that time but it never lasts.

The latest thing I’m trying is compression socks. The first day and night I had no rls at all ! CURE !!!

But the next day it was back with a vengeance !

The drug route is the easiest.

Graham3196 profile image
Graham3196 in reply to LoisTonya

Hi Louis

I think might have misinterpreted this comment to mean that the ferritin measurement might have big errors if its very high But I think you are probably right that the ferritin measurement level is high and the actual ferritin level is high but its only a short term effect and will come back to a truly representative level after a short period of time. In this case the RLS might well go away for this short period of time. The good aspect of this is that this indicates that if you do something (like an iron infusion) to raise your iron ferritin level for the long term then it follows that your RLS should stay away for the long term. That's great news!

in reply to Graham3196

I don't think it works quite like that. I think Ferritin level is a reflection of body iron stores in normal circumstances but when there is inflammation about the ferritin level can rise and therefore give a false impression of stores of iron and it's the actual amount of iron which is relevant to RLS. Normally many of us need higher iron stores than normal for the iron to get the the right place to help RLS so if Ferritin is measured at the wrong time we can think we have enough iron when we don't. Complicated as everything is for RLS.

Or maybe you're right and most folk have got it wrong. Maybe it's not iron as such which is the issue but it's Ferritin itself which has something to do with RLS so, artificially high during inflammation or not it's Ferritin which affects us so raising iron levels by infusion etc raises Ferritin for us - who knows but I wish someone would work it out. That would certainly be an explanation for this 'after infection improvement ' phenomenon, because we can't suddenly have more iron after an infection surely?

Graham3196 profile image
Graham3196 in reply to

Thanks Allison We can all agree that its confusing!

So the first explanation is that ferritin is acting as an indicator of our iron stored as something else and when we have an infection it becomes a false indication for whatever reason. So there is ferritin there but the brain still can't access the iron it needs. That sounds quite reasonable

An explanation (without any knowledge to support it) might be that the body uses ferritin to feed iron to the brain and, if you are sick, the body uses some other form of available iron to produce ferritin as part of producing inflammation.

I don't want to ask Doctor Buchfuhrer to spend his time explaining when its not directly fixing something for us and I might not be able to understand the explanation anyway. I'll spend a bit of time on Dr Google instead and let you know if I find anything.

It might also be that medical science hasn't figured this bit out yet so we need a bunch of students earning their PhDs to discover it. RLS certainly teaches us not to expect that anyone knows all the answers.

In the meantime let's all pressure our medical experts to pump up our ferritin to a safe high level and see if we are among the lucky ones who can forget RLS.

Cheers

in reply to Graham3196

Thanks Graham, A bunch of PhD students would be great.

Here I am up woken by my legs after 90 mins and hoping I can find a way to get them to behave for the rest of the night ..... ha, ha, or 'Aye right!' as we say in Scotland wryly when something is highly unlikely to be the case or wishful thinking!

LotteM profile image
LotteM in reply to

Well, actually and apparently, quite some scientific work has been going on re iron in the past few years. I have been looking through some of it today. It will take quite a bit of intense reading to grasp the contents, unfortunately. The rise in ferritin in response to inflammation is a known phenomenon and not ‘false’ in itself but during inflammation no longer a correct reflection of body stores of iron. Thus, in that way ‘false’.

Ferritin is just one substance in the chain of events in our bodies to regulate uptake, store, use and re-use and excretion of iron, as are transferrin, ferroportin amd hepcidin. Hepcidin was discovered fairly recently and appears a very central and crucial regulator of iron stores. The most recent paper I read today is that hepcidin levels in RLS patients are higher. And hepcidin reduces iron uptake. Very interesting. The great but is, that for RLS the crucial factor is insufficient iron in the brain (not just the body). This is known as BID, Brain Iron Deficiency. However, the relation between brain iron and body iron and its regulation is still elusive. Unfortunately. But research steps are being made and that I find encouraging. Apparently some of these PhD’s and especially their supervisors (e.g. Allen and Earley of Johns Hopkins in US, Winkelman in Germany and Swinkels in NL) are already out there!

Graham3196 profile image
Graham3196 in reply to LotteM

Thanks for explaining this Its nice to know that some researchers are trying to help.

In the meantime it would seem that we can start by raising our ferritin by what ever means possible. This appears to mean iron infusions. I believe this is super difficult in the UK so perhaps RLS-UK needs to plead the case with those in authority to recognise such a treatment. I think in Australia I will have to do it privately but I am now finding out. It is a bit annoying because my daughter had an iron infusion last week for extreme anemia and it cost nothing in a public hospital. (Daughter Ferritin was about 5 she is feeling much brighter, wide awake and happier already)

I must find out what the process is to have it included in our medicare system.

Graham

in reply to LotteM

That's really interesting and encouraging to know Lotte. It feels as if someone cares! Are Hepcidin levels what we are meant to try to outfox by taking iron bisglycinate every 2nd night rather than every night to allow absorption rather than it's natural blocking of absorption?

One of our site contributors told me some time ago to try this in order to try to get iron levels ( ferritin ) into the higher range suggested for RLS? I must have another go at getting mine up. I got as far as 88 some time ago but then stopped taking the iron - you get demoralised don't you and I keep thinking I should try changing my diet instead. There are so many suggested factors and none of them seem to marry up.

Are you able to send me any links to these recent papers?

I wonder where this improvement during and after an illness, especially one with fever, fits in which I and several others have noticed and Dr B in California confirmed was recognised in the RLS clinics.

Graham3196 profile image
Graham3196 in reply to

It seems that raising the ferritin level to about 100 is a good target and will help some people but more will respond to a ferritin level of 300 or 350 according to Doctor Buchfuhrer. It apparently needs an iron infusion to make such a change in a reasonable time. An iron infusion seems to be a huge problem in the UK but easy in the US and I have been told its no problem in Australia. It might just be a matter of money, I don't know. One private clinic advertises AUD340 for the whole job. I am asking more questions but I want to finish with the experiment on potassium citrate before I try an iron infusion then I will shop around. That's about 3 weeks away.

in reply to Graham3196

When I was working there was always concern about potential severe allergic reactions to iron infusions so the hospital drs were very wary and only gave as a last resort. Not sure if the iron infusions are the same preparation now but that worry may still be in there. No doubt there is a cost implication as well and the Drs also have to recognise the need and potential effectiveness for RLS to go for it or it may not be licensed for this indication in the UK. If a treatment is given within the license criteria or Uk guidelines then if there is a problem then the Dr is not culpable. If something is given 'off license' and something goes wrong then the Dr is in big trouble unless they can justify what they did and are expert enough to do this - the more specialised a Dr is about the condition the more they can argue that the treatment was justified according their knowledge. It's a bit of a legal nightmare to say the least!

Graham3196 profile image
Graham3196 in reply to

Thanks Allison

One of the iron infusion products carries the warning that there is one death for every million infusions so the risk is not to be taken lightly. It might be that the unlucky one is allergic and their doctor thinks it OK to do the infusion in his own surgery rather than somewhere near an intensive care unit.

Its super frustrating to think that 5% or 50% of us should just have an iron infusion and be on our way to a normal life.

The product INFeD is apparently the one that is a concern for an allergic reaction while Injectafer is apparently safer. However I will still do everything I can to mitigate any known risk if I get the opportunity of an infusion.

I thought cost was a problem but if a private hospital does it all for AUD340 then its probably a lot cheaper than supplying drugs for the rest of our lives.

Not to mention the "externalities" of lost productivity and accidents caused by tiredness.

Cheers

Graham

EveC profile image
EveC in reply to Graham3196

Graham I had an iron infusion at a GP clinic in Brisbane which cost me very little. Was mostly covered by Medicare. There are a number of GP clinics in Brisbane who can do it. My specialist just sent them the information and they administered it. If i was to have it as an outpatient in a hospital, would have cost me my excess, so i searched

the internet for a cheaper alternative.

Graham3196 profile image
Graham3196 in reply to EveC

That's terrific. The GP specified the infusion for RLS?

Did it work?

Graham

EveC profile image
EveC in reply to Graham3196

Yes one of my Specialists referred me for RLS.

Unfortunately it did not work for me. EveC

Graham3196 profile image
Graham3196 in reply to EveC

Sorry to hear that but thanks for the info

Graham

LotteM profile image
LotteM in reply to EveC

Too bad, indeed. Maybe you need several repeated infusions. Or you may have to wait a bit longer for the results? I think I read in one of the papers on it that it may take as long as several weeks (months?) for some people. Bit also, that it doesn’t work for all.

involuntarydancer profile image
involuntarydancer in reply to LotteM

Lotte, that is brilliant to know. Many thanks for a comprehensive and informative post that also carries that most welcome of sub-texts - hope.

OFgc profile image
OFgc

Well done for putting this list together Graham3196 .

I don't have RLS but husband has and I'm collecting all the information.

I will definitely copy and save it.

May I add two more things that came to my mind from things I read in this forum?

1. Magnet Mattress that was mentioned here:

healthunlocked.com/rlsuk/po...

2. There was a post that I cannot find any more made by Olivia Shakespeare from

thelazynutritionists.co.uk, regarding the Medical Medium's Nutrition recommendations for RLS. I don't know Olivia, but she was very generous and sent me the files. If anyone is still interested here is a post from her blog about it: thelazynutritionists.co.uk/...

(I'm sorry if I'm breaking and group's rules by writing about it if the post was deleted by this group's admins).

Kaarina profile image
KaarinaAdministrator in reply to OFgc

Hi OFgc, Olivia deleted her thread and username from the forum.

OFgc profile image
OFgc in reply to Kaarina

Thank you Kaarina.

Wow, Graham! I am in awe. That is a wonderful list and I love that you back up your various suggestions with the evidence you have (or have not) found. It prompts me to consider setting up a file for myself to keep all the suggestions I encounter.

CindyPatt profile image
CindyPatt

Thank you Graham for taking the time to compile this list....great suggestions!

RSL-RIP profile image
RSL-RIP

Thank you- very helpful.

Jumpey profile image
Jumpey

Well done for pulling all these ideas together. It's a great resource for the group, especially newcomers. Thank you greatly.x

Rezcat11 profile image
Rezcat11

Been lurking here for a month or so, desperate for relief. The magnitude of your undertaking re: this list has inspired me to de-cloak to thank you for your generous heart re: the time and effort to compose this list. Thank you, Graham.

Graham3196 profile image
Graham3196 in reply to Rezcat11

A pleasure I hope it helps.

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