**Disclaimer - I am not recommending you try anything at all without doing your own thorough research. Do not take mine or anyone's word for anything. Research things for yourself first, have a talk with your doctor and then make your decision. I chose to experiment with these things because I felt as though I had no other choice and was very desperate. Everything I write here I am trying to bear in mind that 90% of the people who read it will have stumbled across it on the internet. They won't reply and won't register. They might be inexperienced and not as clued up or in control as some of the existing members here are, so please don't feel as though I am insulting your intelligence. This is all about MY experiences, and what has worked for me may not work in the same way for others - we are all different**
Long time sufferer here, can't remember not suffering with RLS and I am 30 now. I would say I have it quite severely. Not only do I get it in the feet, I also get it in the hands (the webbing between my fingers) and in the gums, which makes me want to dig my nails into my gums and I often walk around with my jaw clenched.
When it's bad I find it impossible to sleep. It is such a frustrating feeling being tired but having an itch you cant scratch. I feel for all off you who're also suffering.
The good news is many years of serious research and experimentation and I have found ways to manage this to the point where life is good again.
Do I still get it? Yes I have it all the time, but when it gets awful I am able to bring it down, and when it's down it is manageable. I think this is the best we can ask for.
First of all, quit the following:
The nicotine withdrawal give me intolerable RLS which lasted for weeks after the day I stopped. Nicotine will give you an instant relief from RLS, which is probably why I got hooked - but two or less hours later, the withdrawals begin and the RLS comes back with vengeance, up to 100% on the RLS scale. This is the worst period of RLS I have ever had.
You have to accept that the coffee you enjoy in the morning has to go. You cannot be free of RLS and drink coffee. In my experience it is impossible. Not only does the coffee give mild RLS when I drink it, but once it wears off (4-6 hours later) the RLS will get worse, and seems to stay bad for at least 3-4 hours afterwards. I would say at this point the RLS is at about 50% on the scale. The problem is caffeine is also addictive. The withdrawals aren't as bad as nicotine, but you will suffer with worse RLS for a few weeks after you stop.
Bring on bad RLS which lasts for 8 or so hours.
Some SSRI's & SNRI's (Venlafaxine is what I tried) As above
- Cold medication (Sudafed etc):
- Melatonin (Natural sleep aid):
Tried this three times and each time had much worse RLS. Reasearch should be done as to why, I couldn't find anything.
It makes it worse, try to stay calm.
Any withdrawals seem to bring on RLS. But it does vary depending on the addiction. Grit your teeth and go through the withdrawal if you have an addiction. It's worth it, you can do it.
If you have a real binge (I'm talking 2 bags of haribo style binge) I have found it to worsen RLS by about 10-20%. It's not a huge trigger, but it is best avoided for those of us who suffer badly.
Cutting these things out of my life reduced RLS significantly for me. I went from a wreck to semi-functioning human within 6 months. I have never gone back because I can't go through that withdrawal again. I've been this way for the last 9 years or so, and yes I still suffer with RLS but I no longer have those weeks where you've barely slept and you end up in tears losing hope anymore.
Now however, I have found some things to cure RLS to varying .degrees. When I've accidentally triggered my RLS I will resort to one or a combination of the following:
For me it can reduce RLS by 20% or more. It's side effect free and natural. Worth keeping on hand.
As above (It works in the same way as L -tryptophan as a precursor to seretonin so don't take both together) It affected my appetite though (making me less hungry) and as a sportsman this was not beneficial to me, though it may be a considered a good thing if you're dieting.
Another natural amino acid, It's found in green tea and has a number of health benefits. Relaxation being one of them. Unfortunately it's no RLS cure, but I'd say it does reduce the symptoms slightly, perhaps 5% or perhaps placebo. The reason I mention it is because it is very effective at reducing the RLS effects of caffeine. If you have had too much caffeine and it's triggered your RLS then try taking some L-Theanine, that's where it seems to have it's biggest effect. You can also combine it with any of the other remedies on my list for added effect.
- Valium / Xanax (benzos):
Reduces RLS by about 70%. However this is a super addictive drug so it has the potential to be an even bigger problem. I moved on to another cure.
Limited effectiveness. Codeine around 30% effective. DHC was more effective in higher doses to about 50-60% but again, risks outweigh the benefits in the long term.
- Pregabalin (Lyrica):
Makes you feel amazing and reduces RLS by about 50% but serious danger for addiction for me, so I moved on. I deemed it not worth the risk bar once in a blue moon relief (same for benzos or opiates).
Someone I know, who happens to have the exact same symptoms I do says he has found an effective cure for RLS. CBD products do not have any effect in my experience it is the THC which has the effect and it can reduce the RLS up to 90% and lasts for 2-3 hours at a time. This combined with L-Tryptophan will normally put the person who isn't me asleep and give him a good rest. He says you must have an iron will though, only use it at night time when the RLS is at it's worst and always be careful. He says do not mix it with Nicotine, for the reasons I've mentioned with addiction. You can cook and eat it or use a vaporiser. Obviously there can be big down sides to Cannabis use, so if you're considering it then definitely be careful and do not let it become a daily habit - when used responsibly science has proven it to be very safe and when compared to some of the prescription drugs we have been prescribed (DHC, Tramadol, Valium etc) it seems almost laughable that it's illegal, but it is, so be careful.
I tried this for a completely different reason, but I noticed it would reduce RLS by about 50% while I was taking it. It was legal to buy, not sure if it is any more. There should be funded studies into this, as it would be a very safe long term aid for RLS.
- Kava Kava:
This is a natural calming drug, I'd describe it as the opposite of caffeine. I'm not sure if it is still legal to buy, but it reduced RLS by 20% or so for me. Edit: It seems to be illegal now. I find this so frustrating when something natural, safe and medically beneficial is suddenly made illegal. Either way, it does still seem to be available online. Research should be done to find out what it is Kava Kava does in the brain to combat RLS.
It's another natural drug made from tree leaves. It's just this year been made illegal in the UK (thanks guys!).. I used it for a while and it did reduce symptoms by up to 40% however it was expensive, difficult to prepare and had other side effects like nausea. There's also an on going debate as to weather it's addictive or not. It makes my list though as there should be some studies into how and why it's effective. Perhaps we can find a pattern between these drugs.
I have tried several doctors but always got 'the look', you know, when they just do not understand at all. I have been given opiates etc, but they give limited relief and will become addictive and eventually make you worse.
It's worth mentioning the following also:
- Vitamin Supplements (B complex, Viatmin D, E):
I have not found to be useful at all at any dosage. Might be worth a try, if you're deficient then perhaps they may help.
I can't tell if it makes a difference or not - I have to be honest. I do exercise very regularly. I am a boxer and enjoy sports. It's definitely not a cure but it has so many other benefits that I would still recommend it anyway.
Only provides relief while the massage in ongoing.
I don't know why or how, but thinking about RLS makes the symptoms worse. If you manage to get your mind off of it you will realise that you actually haven't thought about it for the last hour or so. This doesn't work at night time, but if you've got RLS during the day sometimes just occupying yourself for a while can make you forget about it for a while.
My tactic is to just keep rotating the drugs making sure you're not doing any of them more than once in 10 days. It usually means I have something to fall back on if it's going to be a bad night with no risk of addiction.
It's not ideal but it is better than taking a regular prescription for drugs that can cause augmentation amongst other issues. The natural remedies do work and can be stacked with the other drugs if you're struggling. Always be aware of addiction, if you're having to up the dose to get the same effect then you're becoming addicted. Don't risk it.
I hope this helps someone. I know how horrible RLS can be.
My plan is to put together a huge list of everything helpful, and try to figure out what it is they all do that helps - like connect the dots - in the hope of passing the information on to researchers in the hope of aiding them with the creation of an effective safe medication.
Good luck all.
Edit to add:
I forgot to mention iron.
Iron deficiency is very common, and has been linked to RLS. That's why many pregnant women experience RLS.
Iron is the most common deficiency in the world, without enough iron your body isn't able to properly regulate branched chain amino acids in the blood brain barrier which compete for entry into the transporters against neurotransmitters. By adding enough iron, you will ensure that your body can produce enough serotonin and other neurotransmitters so that your body can properly regulate it's self.
Iron Bisglycinate, 14mg taken twice daily with food will help to rule out an iron deficiency. Take 1000mg vitamin C with it as this will help with absorption of the iron.