My partner has had severe RLS for 13 years. He's been involved in RLS studies at the Imperial College London and tried the pharmaceuticals prescribed by doctors etc but nothing worked long term.
Through experimentation and hours of research over recent years we've slowly come across 2 solutions that ease it using supplements (see below), exercise (40-80 mins walk at least a day, healthy diet (food combining such as not mixing proteins and starches in a meal) and less coffee (1 a day) and only treats like chocolate, ice cream or puddings (once a week).
The solutions we've found so far are....
1 x Iron and vitamin C supplement (from Holland and Barratt) and 1x Folic Acid (also from Holland and Barratt) each night right before going to bed. It took a few weeks to see the effects but he is not throwing himself around every night and is sleeping more deeply.
And....
The other combination that seems to work is 1 x Folic Acid and 1x B-Complex and B12 (Holland and Barratt) before bed.
Also, a hot bath for 15-20 mins twice a week in a cup of Epsom Salts. 10 min leg massages once or twice a week focusing on the hip/groin area ( part of the spinothalamic tract), calf muscles, ankles and the bottom of the feet.
I hope it helps others
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chirpyandcheerful
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I must talk to the wife about those groin massages
I try most of the rest but after 100mg tramadol, 40/20mg of Targinact, Neupro patch 2mg and some cannabis I eventually had to turn to Kratom at 5am this morning to get some relief! Oh yeah a hot shower too as I didn't want to wake the house running a bath at 4am!!!
Glad your partner is getting success, long may it last.
Is your partner 100% RLS free at night when he wants to sleep? I too take iron and personally like ferrous bisglycinate. I read on here that for iron to be effective for RLS (and not just increasing your bodily stores) it has to be able to cross the blood brain barrier, especially at night when we need it the most. I'm sure you've heard that there's a shortage of iron in the RLS brain. So now what made you choose the other supplements? I know that people who are low on b12 and possibly folate cannot absorb iron from their foods. Is that what your research has shown. Lastly (I know a lot of questions) have you tried stopping the vitamins for one night to see if the RLS comes back. Presently, I do not get RLS every night so I only take the iron on an as needed basis.
Another person on here (RLSGILLS) stopped the bisglycinate one night but the RLS started right up. Keep up the great work!
No, he's not 100% RLS free - quite possibly that'd never happen - but he does sleep better ( more soundly) and the sensations in his legs are lessened enough for him to sleep for longer periods without waking so he can function throughout the day at work. Without the vitamins, massages and diet control etc he wouldn't sleep more than an two- three hours at night, would slowly fall into depression again and not function in life. It's such a debilitating ailment.
Well you two have come very far and your research will be of benefit to many on here. I learned a thing or two about RLS - the hard way. A few years ago I was put on a calcium channel blocker which gave me all day RLS. Recently I stopped taking melatonin and that seemed to HELP my RLS and my doctor had recommended it for RLS. Go figure. From this site I learned there are numerous medications, too many to recount, that make RLS very bad. Things like antihistamines, statins, anti-depressants and even sugar substitutes or a large meal in the evening. All that aside the most important thing I learned from this site is the proper way to take iron and that has made all the difference. As a result I have lost no sleep to RLS. I take a form of iron called ferrous bisglycinate. I have to take it on an empty stomach otherwise it bearly works. I started out by taking it in the morning and it did nothing for my night time RLS. But by taking it at night, at the first twinge (usually around 10pm) it really puts the RLS to rest - for the night. I don't even need to take vitamin C with it. There are numerous people on here who take that form of iron. One brand name is Gentle Iron. I also started to take apple cider vinegar for another condition and I would swear that it is helping with my RLS but not sure why. Supposedly people with RLS have high levels of brain histamine (and of course low levels of brain iron) and maybe the ACV is helping with that histamine. Speaking of brain iron, unlike the ACV, I think I know why the bisglycinate works so well. It's supposed to be a type of iron that is able to cross the blood brain barrier. Lastly if your partner has any other conditions I have read that the more you can do to help those other conditions the better the RLS might be as well. I am overweight and that probably contributed to the downfall of my dopamine receptors. Restricting calories in general is supposed to whip those receptors back into shape. I'm not holding my breath
I stopped taking Melatonin, thanks to your post, but do you know what I can take instead? I have always been a 'hard-to-get-to-sleeper' with or without RLS. Any suggestions??
Has your RLS improved since stopping the melatonin. I find that ferrous bisglycinate (one 25mg capsule) not only helps on RLS nights but also for regular old insomnia. If you buy it and try it and like it after a few nights you must discuss with your doctor. My red blood count is excellent and my iron stores are over 100 yet I still get RLS some nights and insomnia some nights and the iron helps with both. Check out Amazon if you're interested. Good luck. Also read LauraFlora's posts. She has done lots of experimentation and has come up with lots of anti-anxiety anti-insomnia natural remedies.
You are always so good, Whitebuffalo, in your research and backing up what you say with real info. I, myself, have learned a lot from Life Extension on different subjects as well. They are a great source. Thanks!
Sorry, I have not been on here for awhile as I have been busy. My RLS continues to be very minimal, just a flutter here and there. If I do feel it, I just change my position and it goes away. That is quite different than it had been which was almost continuous and much more pronounced. So, no, it has not disturbed my sleep lately (tho it used to.)
Some nights I think I do not feel it at all. But the biggest thing is I am not worrying about it now. What do I think has made the biggest difference? The iron bisglycinate. (I use Solgar's Gentle Iron also.) I took iron randomly before, hearing that it was good for RLS, but not consistently. That was because post-menopausal women are advised that they don't need iron, so not to take it. HOWEVER, with all the info I have read now (Thank you, Whitebuffalo!) about RLS people having a lack of iron in their brains (perhaps some genetic quirk that causes them (us) not to be able to process it correctly), it seems to me that the above warning does not apply to those of us who have RLS.
Also, again, my chiropractor. Recently, my sacroiliac was 'out 'again and the RLS was a bit more pronounced, esp. on the left side. (Tho NOT bad.) However, when I went for my usual once every 4 or 5 week appt. and he put things back where they belong -- that changed it all for the good again.
I take the iron about 45 min to an hour before bed. I have not tried taking it in the morning, as I listened up when you said that did not work for you. And I have been consistent - I take it every night. I have taken a few other things for RLS - taurine, quercetin, magnesium, tho not every night. Which is why I think the iron makes the biggest difference.
I hope other people will listen and try the iron. Especially the people who are not having success with drugs or are having too many side affects.
I have developed a similar regime for coping with RLS, though not following the stricter dietary rules that you have applied, (but since my wife is a dietitian I have probably been encouraged into a relatively healthy diet anyway!). For me the key things have been the weekly massage, vitamins and exercise. This has given me far longer and more consistent relief than the drug therapy my GP tried.
Glad he is having success without having to take drugs. (Altho some people do because of other issues causing their RLS.) I myself do not take any drugs and have found quite a bit of what you post here to be very helpful. I use iron, calcium, magnesium and B complex (and C.) Also I go to a chiropractor to keep my spine in alignment. And stretching exercises. These things seem to help my RLS very much. There are some other people on here who also have found, esp. the iron, to be helpful. And ones who use yoga.
RLS has a few different causes behind it that complicate things for some people - such as spinal surgery, MS, spinal lesions, etc., beyond the basic RLS. Those are the people for whom it is much more difficult to treat, and the ones I see on this site who seem to need to take drugs.
Good to hear from you. I hope other people can benefit from what he has found to be helpful, also.
Hi chirpyandcheerful. I am so glad that your friend has found several ways to cope with the horrible symptoms associated with this disease. As I am sure you've been told, some things work for some people and some don't, but the more we share with one another, the more options there are from which to choose and that is always helpful. Good Luck!
Its interesting that your partner is almost symptom free. There might be a few things you can do to get all the way there. I am intolerant of a wide range of foods and if I keep them out of my diet then I am almost symptom free. Most of these foods are in a group of carbohydrates called FODMAPS There is a lot about it in this and other RLS and IBS forums. There are also clinics at quite a few major hospitals. It has amazed me that a very small amount of the wrong food is sufficient to excite RLS. All my coffee and tea has to be decaf. I can't eat one ice cream or drink one cup of coffee with milk unless its a lactose variety, like almond, rice or just lactose free cows milk.
The important thing is that most people are only upset by on or two of the FODMAPs so you can impose a really strict diet on those foods while enjoying all sorts of other things.
If you decide to try this get some expert help. A FODMAP diet is not inherently a healthy diet and many foods that are FODMAP carriers would be on everyone's good food guide. Apples pears onions garlic stone fruit, dried fruit, avocado peas celery and more. But the good news is that there are plenty of good foods not on the list and you might just be intolerant to only one or two FODMAPS anyway.
Its worthwhile for everyone to investigate. Its cheap and you might find considerable relief in a short time - sometimes overnight and sometimes after 12 weeks. You don't have to pay anyone (other than a dietician)
Many thanks for this! I hadn't given any thought to it although I know about the FODMAP concept as I'm Australian and I believe it originated there as a result of a study at Monash Uni. I will have a look at it and see if any connections can be made. Many thanks once again
I'm pretty happy with what my doctor suggested: Magnesium & Calcium 2000 mg daily with Iron once daily. With this along with smoking cannabis, I'm sleeping 95% better. I have not used gabapentin nor tramado....so you know my body is feeling much better as well.
Firstly thank you for sharing this amount of experience and knowledge with us I'm definitely going to give this a go!!
I currently take Gabapentin 2 x 600, before I go to sleep. Well, in fact I can take them 2 hours prior to sleeping and still get a decent night.
I know that everyone suffers at different levels with this and I have been suffering with it for what seems like a very long time. I can remember being very young and having spasms in my calves and very restless legs. I'm also a thyroid sufferer taking 300mcg per day. That's been slowly on the increase since I was 16yrs of age and now I'm 43.
I've been taking Gabapentin for the past 7 years. I know it's not the highest of doses but any dose is going to have its long term effects.
It's 04:26 and I missed the chemist therefore cannot sleep . ....being dependant on any substance is not a path I wish to take so I'm going to give this a go ! !
Does anyone know of any studies linked to diet ie being vegan? I've been a vegetarian/vegan most my life with eating fish which I stopped only just 4 years ago. looking in to this at the moment to see how I can also increase the odds in my favour and come off Gabapentin 100%. I have reduced it overy the past 2 years but need to do more.
Thanks again and sorry that your partner suffers from it, long may the results continue.
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