On and off since 20 years

[Joker197cinque]

Hi group,

I have RLS since I was 25 .. and it comes and goes for variable periods (days, months..) .. I am not able to understand what triggers it. I think salt, stress, chocolate .. but I suppose also deficit of something (I read here iron perhaps).

Where can I find or can you please share all "without-pills" remedies that kind of work here ? I read about compression socks, weighted blankets..

These last days it was pretty bad .. only way to sleep was to either sleep prone and/or take a Benzodiazepine.

Thanks friends

[Madlegs1]

There are so many "remedies" out there, it would take the rest of my short life to enumerate them all.

I suggest you use up some of your lockdown time to read through all the last few months posts here.

Keeping a forensic food diary is also useful. There are some hidden triggers in most food.

Msg is one notorious one, as is Sls which is in many toothpastes.

Everyone has their own triggers, so you will find your own over time.

Good luck.

[RoadRunner44]

Last year my doctor thought I may have restless legs. It is apparent to me now, that I don't have this dreadful condition. I may have peripheral neuropathy. Due to the havoc the corona virus has caused I am unable to see a doctor or neurologist for the moment.

I suffered with great uncertainty and discomfort up until just about 6 weeks ago. Relief came with the real advice given to me via a member of this forum. He goes by the name of Manerva, a man of exceptional knowledge and advice who I, like others have come to trust.!

I hope he will read your post and respond accordingly. Believe me, he has become a highly valued member of the forum who many of us have come to rely on. His knowledge of this terribly distressing complaint is second to none. I have great trust in his wisdom.

So, hopefully he will respond to your plight.

Best wishes,

Chrys 😯

[Hidden]

Hi, sorry to hear you're another victim of this affliction.

If your RLS comes and goes, it may be that something is triggering it. It's also possible that it comes and goes for some other reason.

Madlegs suggestion of keeping a journal seems a good idea to see if there is any pattern or correspondence between the occurence of your symptoms and daily, weekly, monthly or even yearly events.

This can be anything that changes from to day to a change in season. E.g. my symptoms are worse in the winter months.

RLS is actually quite a complex condition and whereas some people have it because of an inherited predisposition, others get it secondary to some other underlying condition. e.g. anaemia, a thyroid dysfunction, diabetes, neuropathy or kidney failure. In some cases it appears that RLS may arise from circulatory issues.

Assuming you don't have any of those, then it's likely you have the inherited predisposition and hence this usually requires a trigger as well.

Many of the triggers are medications. There is quite a list of these. So if there is some medication you take intermittently, then it may be one of these.

The list includes antidepressants, some antacids, some anti nausea medicines, some antihistamines and beta blockers. The ones you take intermittently will obviously cause intermittent symptoms.

Assuming you don't take any of these then there are dietary triggers which vary a lot. Alcohol is a trigger for most people as is refined sugar. Caffeine is a trigger for some, but helps other people. I'm not aware salt is a trigger. Some people benefit from a reduced carbohydrate diet, gluten or lactose free diet, or low oxalate diet. This may be a matter of trial and error.

As regards remedies, there is a myriad and I mention a few.

There are several nutritional remedies, these include correcting any mineral or vitamin deficiencies and other dietary supplements.

THE major mineral factor in RLS is Brain Iron Deficiency and a key indicator for this is your "ferritin" level. You can read elsewhere in this forum about that. Ferritin can be raised by taking an oral supplement. Some people seek an IV infus ion.

Magnesium is often mentioned as possibly being of help, this can be taken as tablets, put on the skin or bathed in (epsoms salts).l

Vitamin B12 and especially vitamin D supplements can help of you're deficient of these. Vit D deficiency is more likely.

Celery juice, seriously, can help with RLS. You can get tablets!

There are various devices that are claimed to help. As we're all different, then where a device works for one person, it may not work for another. Some people mention weighted blankets. Some people mention compression stocking, these may be helpful if RLS is due to a circulatory issue. Sime people mention massagers or vibratory devices. One such is licensed for RLS in the US, but there's no real evidence it works.

Acupuncture, chiropractor therapy or TENS don't appear to help.

Some of these remedies have some effect for psychological reasons and there's nothing wrong with that. Stress does make RLS worse and the opposite helps. This is not just psychological.

You may find people suggesting all sorts of things which they claim work, but I often suspect it's a placebo effect. There are also popular myths such as drinking tonic water or putting a bar of soap in your bed. I wouldn't rely on those!

There are also some remedies that aren't officially medicines, but they have physiological effects. These include kratom and cannabis. These do appear to work for some but there are risks to them, e.g. their legality.

CBD oil is often suggested but there's no real evidence it works for RLS.

Finally, it's a matter of choice, there are recognised medicines for RLS. They shouldn't be taken if it can be avoided as they all have issues with them.

However, if all the other remedies are either not feasible, too much effort, but mainly not effective and you're suffering debilitating symptoms every day then it may be worth considering a medication. The benefits might outweigh the risks and side effects.

Benzodiazepines may help a little with sleeplessness due to RLS, they don't really help with RLS symptoms and shouldn't really be taken on a regular basis.

I hope this information helps a little. I suggest you read a few posts on this forum.

[wilabozo]

Hey, you're lucky that it sometimes goes... no such luxury for most of us here, although I had 3 nights in a row last week which was amazing. I don't use drugs, just diet, and moderate exercise. I've dumbed down my diet to rice / vege / bit of meat or salmon / bananas / apples, and experiment with a few other ingredients... if my gut feels good, then the legs ease off.

[Mum007]

I would go down the iron route first. Get your doctor to check your iron FERRITIN levels and get the actual number. Normal is not normal For rsl sufferers. It should be at least over 100. If it is low you can buy gentle iron tablets from Holland and Barrett And I suggest you take one every other night an hour before bed away from anything with dairy products in it. If you don’t like capsules then Spatone sachets liquid iron is also good. You can get these from some supermarkets or chemists. Give it at least a month to see if it is working.

[Hidden]

I don't see my RLS as a buddy nor as an enemy. It's partly a, (yet another) problem to be solved or something to be accepted. I did struggle with it at one time, but struggling with it doesn't make things any better.

Since cancer is also a part of my life anyway, RLS is a lesser thing for me.

I don't see cancer as an enemy either.