My Start Page - What I've learned and do now.

[fritz34]

This is the Start Here paper, with clues & tips for RLS sufferers.

Print it out and refer to it often. It may be your road map to possible relief.

START HERE - and welcome.

If you actually have Restless Legs (or Limbs) Syndrome - RLS/PLMD (now also known as Willis-Eckbom Disease) and do not know what to do, here is a guide to what actions we are encouraging people to take.

We often talk about obtaining RLS help and relief as a process. It is very possible to waste a lot of time on things that will never work, and your physical and emotional symptoms and suffering will go on much longer than necessary.

Here is what we recommend that you do. Starting TODAY:

1. Make sure you are not taking any OTC med, "herb", "tonic" or other product that is making your symptoms worse. Some classes of drugs, especially anti-depressants and antihistamines, may make RLS worse. (In each class there are safe alternatives).

2. Do not waste time on 'treatments' or 'regimens' that have not held up to clinical or scientific scrutiny. You must understand and accept that you cannot exercise, diet, vitamin, cream, "supplement" "spray", "tonic" "detox", "reiki" or herb your way out of RLS. There is no cure, yet. Pseudo-science practices such as homeopathy', 'naturopathy' and chiropractic do not work for RLS. Be Wary of so-called “Alternative,” “Complementary,” and “Integrative” Health Methods. They will not help with RLS or probably any other disease. Also, there is no device, gadget or "miracle invention" that will afford you any significant RLS symptom relief, long-term. This is a disease of the BRAIN.

Quinine, pickle juice and a 'bar of soap', for example, do not work. Have nothing to do with mail order or OTC miracles, quacks or junk science. Be very careful what you read on FaceBook and watch on YouTube and social media in general- tons of garbage, lies and misinformation, on every subject, on-line. There is a web site, QuackWatch (dot) org devoted to healthcare fraud. A very important site and highly recommended. Snopes (dot) com is also an outstanding source for debunking lies, rumors, nonsense and general idiocy. Be sure to check out both sites.

3. Make sure your iron levels, all *4* iron parameters, are where they are supposed to be in the RLS world. If you believe or have been told that your iron is "normal" or "within limits" or "OK" it very well may not be. Get tested the right way and be sure to overnight fast. We have a paper on RLS and iron, as well as videos. Proper iron levels may be CRITICAL.

4. Make a MAJOR effort to find a doctor who knows what RLS is and is *actively* treating patients and seeing positive outcomes. You can vett doctors over the phone - those who refuse to answer can be eliminated. An experienced Movement Disorder specialist is preferable. Don't forget about Neurology departments at medical schools and academic centers - colleges and universities. You may have to travel to get good, competent RLS help.

5. Once you find a doctor, by then you should be a minor authority on RLS yourself, from reading the papers here in the group's File folder. (NOTE:We do not generate or originate content - we are not doctors - we are fellow sufferers.) This info is from the leading RLS doctors and research centers in the country, and it is kept up-to-date.

6. You should be able to discuss with your doctor the various treatments available to relieve RLS symptoms. If s/he won't listen to you, you may have to find a doctor who will listen. You may have to travel to find competent help. Outside of the USA, work to change outdated, uninformed health care systems. The UK's National Health for instance is woefully outdated about RLS treatment.

7. Whatever you do, DO NOT MENTION FACEBOOK. Most health care professionals, usually with very good reason, dismiss social media as worthless and often deliberately misleading.

8. You must take your disease seriously and become your own advocate. Refuse to be a helpless, couch-sitting, arm-waving victim. You must persist and never give up. Don't waste your time trying to explain your disease to others. Don't even mention it. None of this is easy, but some measure of relief is available to EVERYONE. More effort from you will mean more success and possibly greater symptom relief.

9. Finally, do not tolerate incompetence and/or indifference in health care providers. Good help is out there. Good help is here in this group. We have a large group of wonderful members who will share their RLS history with you. We do not give medical advice, of course, but we know a thing or two. Stay with us, ask questions - there is no such thing as a 'dumb' question.

You have a responsibility to yourself to accept and address your disease. Blessings and he best of luck to all of you.

[Hellouandme1996]

Liked ur post interesting thoughts

[Scubaholic]

Thank you! Following advice on this site last week I have requested an Iron panel. Unfortunately the earliest appt I have been offered for the blood test is 5 weeks away... Which feels a long time to wait for info which might indicate a specific treatment option with episodes occurring pretty much every night atm..But at least the doctor was well aware of the links and agreed immediately. However he was also asking about medication and wanting to offer the ones associated with augmentation which he felt were more effective than gabapentin/ pregabolin...When I explained the advice from here he was a pleasant but dismissive saying that he preferred to go with scientifically backed recommendations. I pointed out that these were scientifically backed ones...

He would certainly give me Gaba if I wanted but would not have without my own researched knowledge..

Thanks everyone on here!

[RLSLearner in reply to Scubaholic]

Scrubaholic - 5 weeks just to get the blood test???? Science - always give a copy of the MAYO Algorithm on managing RLS. Nothing more definitive in the medical literature. Only useful to a doctor once they have read it.

[Scubaholic in reply to RLSLearner]

I'm unimpressed with the wait to say the least. I have an actual physical apptm ( rather than the usual phone consultation)this week about another matter and am going to question this delay then..

[fritz34 in reply to Scubaholic]

It's never a good idea to tell the doc you got your ideas from the Internet, especially FaceBook. Just tell him or her that you've been doing independent study.

[Scubaholic in reply to fritz34]

I didn't say FB though. Told him was the RLS charity information. He wasn't disrespectful but wasn't going to change his standpoint...

[Madlegs1]

Thank you for posting a fairly comprehensive analysis of all that we advise on this site.

However-- I do need to add a couple of important extra information, to complement your excellent contribution.

You don't mention keeping a food diary to pinpoint triggers. This is very important.

Neither do you mention medicines that are constantly prescribed for RLS, and even are advised by so-called regulatory bodies, and yet are virtually certain to make this condition far worse. ( DAs and augmentation).

This is probably the most constant complaint we deal with here.

Thanks again.

[fritz34 in reply to Madlegs1]

I have a very nice handout from Dr. Mark Buchfuhrer of Stanford University in the USA. It lists drugs, by class, that make RLS worse and lists safe alternatives. Unfortunately it is in pdf format and I'm not sure how to upload it or even if I am permitted to do so.

[Madlegs1 in reply to fritz34]

Ah yes-- Mark is a good friend to this site, and quite a number of us are in regular communication with him, by email and through his excellent site in Southern Ca.

Others are actually patients of his in the USA. He does something called Zoom, which I gather is a mode of communication. Perhaps using jet engines??🤔

Well worth following up. His site is a mine of information on the latest treatments.

[fritz34]

With regard to food diaries, there are only two proven triggers - caffeine and alcohol. There are patients who claim to have eliminated RLS symptoms by cutting, say, sugar or white bread or...you name it. These last are all anecdotal. Except for the two well-known triggers named, there is no dietary component to RLS.

There has never been any proof that a given 'diet' will eliminate RLS symptoms. If it works for you, that's great, but we really should avoid the Generalization Bias.

The other possibility is that you may have been misdiagnosed and don't really have RLS.

[Madlegs1 in reply to fritz34]

Caffeine is NOT a trigger.

Some people find it actually gives relief.

It may well cause insomnia--- but that is not RLS.

Many experts still propound this myth.

The origin of this myth stems from a Japanese research into sleep , a by product of which ,was that one individual found that coffee set off his legs. So-- hardly scientific??

There is very little actual serious research into RLS causes.

But I can affirm what MY triggers are.

Msg is a real biggy. As are various colourings, sweeteners etc.

These are all discovered by experience.

We also cannot discount the efficacy of placebo. The bar of soap worked for me for one night. But never again.🤔

RLS seems to be profoundly an individual experience, which just compounds the difficulty of finding causes and reliefs.

Thanks for you contributions.

[ELLSBELLS in reply to Madlegs1]

One can develop food triggers. A few years ago I had zero triggers, could consume all artificial sweeteners with no affect on RLS. Started with aspartame setting off RLS but could tolerate saccharine then that triggered RLS, but still OK with sugar. Do not know why this has happened, but be warned just because you are trigger free at the moment it may not always be the case. Only recognised what was happening with food triggers thanks to this page.

[SueJohnson in reply to fritz34]

You are the one making generalizations. Perhaps proven but there are a lot of triggers as people on this site can tell you. I know of lots of them but don't have the time to see if they are "proven."

[Simkin]

Thank you for interesting read. I would just agree with Madlegs that one size does not fit all. With RLS a trigger for one is not necessarily a trigger for another.I would recommend to our group that they buy the book "Restless Legs Syndrome" by Lisa Hudson.

This was recommended to me by committee members of RLS UK.

[Elisse3]

Well i say if you find something that works for you then go for it even if it only works for a short time and most likely a placebo effect. The devices , The Therapulse which is approved by NICE has/is been helping those who have been getting some relief no it’s not a cure it gives relief when having breakthrough symptoms. Coffee has helped some of us get back to sleep in the night. So although i agree with most of what you have said we can’t dismiss everything that might give relief one night of relief is a blessing if that’s all you get.

[RiversW]

Fritz34, thanks for spending the time and effort putting together such a comprehensive document. I would like to add my two cents about triggers. Like a lot of things related to RLS, they do appear to be different for everyone.

After being diagnosed with RLS more than 40 years ago, I understood pretty quickly how to trigger a sleepless, jumpy night . Consume alcohol, sugar, or chocolate before sleep time. Oh no! Not chocolate. Almost instant discomfort. Needless to say, I was not always able to resist and suffered the consequences.

On the other hand, coffee was never a trigger. Quite the opposite. I learned early on that coffee could actually help when I was experiencing RLS symptoms. Up at 3 in the morning, pacing till 5 and finally deciding that since no sleep was coming, I'll have a cup of coffee. 30 minutes later, symptoms subside, I fall asleep. Counterintuitive yes, but thats how it works for me. Interestingly, after my doctor switched me from pramipexole to the neupro patch, all my previous triggers vanished. Heaven. Chocolate again. All was hunky dory until augmentation started. At that point the dopamine agonist was the trigger.

Now, I am eliminating the dopamine agonist.

My long winded point here? When it comes to RLS, there seems to be so many variables depending on the sufferer; unfortunately making treatment all the more difficult.

R

[fritz34 in reply to RiversW]

As far as I can tell, there has only been one clinical trial of magnesium for RLS. Don't know what the results were, but the amount of Mg was very small, I'm thinking 200 mg per day. Also, I don't remember what type of Mg was used. I take the oxide, 1000 mg per day. It's cheap and it definitely helps me.

[Madlegs1 in reply to fritz34]

Mg oxide is the least bio available of magnesium.

Generally ,the -ates are best. Citrate, glycinate etc.

Too much oxide is a laxative. 😁

[ChrisColumbus in reply to fritz34]

Mg oxide is, as Madlegs1 says, the least bio-available form of magnesium and generally only useful to combat constipation: you are taking a very high daily dose but if it helps - without causing diarrhoea - great.

I use Mg citrate which is much more bio-available, works for me, but can still cause diarrhoea in some: I chose it because it is more readily available retail in the UK than Mg glycinate or aspartate, and it doesn't cause me bowel problems as long as I spread taking it through the day. (I have post-radiotherapy proctitis of the bowel, so have to be careful). Mg glycinate has the advantages of being less likely to cause diarrhoea and is also said to aid sleep: it seems widely available in the US, but in the UK it generally has to be ordered. Your profile hasn't been completed so doesn't reveal which country you are in, your age or any RLS/medical history:

healthunlocked.com/rlsuk/po...

[Busunsc713]

Where do I find the “File Folder” of supporting literature?

[fritz34 in reply to Busunsc713]

That is in a FaceBook RLS group. Sorry.

[Madlegs1 in reply to fritz34]

Don't touch Fbook.

Full of rubbish.

[Elisse3 in reply to Madlegs1]

Lol i agree most of fb is rubbish but i spend a lot time on one of the fb RLS groups trying to help those who are augmenting on their DA. Oh boy some take some convincing and don’t seem to think it will happen as they have been fine taking which ever DA they are taking. Even told them to join this forum dont know if any have 😊

[Madlegs1 in reply to Elisse3]

Oh Elisse-- I wouldn't dream of casting nasturtiums on anything you do.

My sincere apologies. 💚

[Elisse3 in reply to Madlegs1]

No need to apologise. Just explaining about the fb rls groups, i mostly help out on just one of them. Which is why you don’t see me on here like i used to. 😊

[ChrisColumbus]

Interesting, but you rely too much on "clinical or scientific scrutiny" when there has been far too little meaningful research into RLS.

Just to take magnesium as an example - what research that has taken place (or is ongoing) is often on tiny samples of e.g. 10-20 people and using inadequate doses of e.g. 100mg or 200mg a day of magnesium citrate. After getting no help from iron supplementation I took 600mg a day of magnesium citrate (in 3 x 200mg doses spread through the day) to stop RLS symptoms initially, then reduced to 400mg for a year or two (300mg-400mg a day is the recommended dose given in the UK), then reduced again to a maintenance amount of 200mg a day. Trialling on 100mg (often recommended in the US) or even 200mg a day is unlikely to give a significantly measurable response across such a small sample of people.

You are dismissive of sufferers' experience of dietary triggers, other than naming caffeine (which actually helps some) and alcohol. Some sufferers have NO dietary triggers at all, others have a wide range: again, insufficient research has been done.

I've never taken medication for RLS, and have never had any serious - or useful - help from UK doctors. After struggling with RLS symptoms myself for 40 years and finally getting relief from magnesium supplementation - suggested to me by a relative and then by a UK health and wellness retailer - I had a lot of breakthrough events and then found that by experimentation I had to:

cut out diet drinks and foods as the artificial sweeteners, particularly aspartame, were triggers;

reduce but not cut out sugary foods and drinks - particularly in the evenings;

reduce but not cut out caffeine;

try to take regular moderate exercise;

stay cool in bed (but some find that they need to stay warm in bed);

sleep as much as possible on my side or front rather than on my back;

avoid statins (talk to your doctor if you have side effects and discuss alternatives: they do exist: healthunlocked.com/rlsuk/po....

In the last year I've only experienced RLS symptoms a few times, and I've always been able to work out what has caused it.

My solutions work for me, but not necessarily for others - e.g. my own brother gets no help from magnesium.      Madlegs1 has mentioned his own solutions.

In my view RLS is a complex and variable *collection* of syndromes with different causes which does not have a simple universal solution.

[Madlegs1 in reply to ChrisColumbus]

Agree fully.👍