Coming here as a last resort really! My partner has restless leg syndrome and it is really impacting both of our sleeping. He has very disturbed nights sleep because he can't get into a deep sleep from twitching his legs, and I can't sleep because he's either twitching, or I'm waiting for him to twitch. It has become extremely stressful and frustrating for both of us.
He's tried hot baths and does exercise regularly however it makes no difference. While I know medication is an option, he is reluctant to do this.
Does anyone have any advice from living with someone with restless leg syndrome or who has restless leg syndrome that might be able to advise on tips that could ease his discomfort?
Thanks.
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jenjen210
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He could get his iron levels checked (a simple blood test with a GP). He needs to get the actual serum ferritin number. Not just an assurance that it is normal. US experts are very strong on the link between raised iron levels and improved rls symptoms. If his level is anywhere below about 90 he should think about taking an iron supplement. It made an enormous improvement to my symptoms but I do also take medication and tbh it sounds like he probably needs medication also.
Apart from iron there are all the lifestyle recommendations you will find on any rls help page.
Lots of different supplements are recommended by various people - taurine, mucuna pruriens, magnesium, vit D3 etc etc Also essential oils, moderate exercise, stretching, diet, definitely avoid alcohol and also caffeine late in the day.
He could also look at Relaxis pad if he is very determined not to go down the medication route. It is specifically designed for use with rls. It is very expensive however. It does not have a distributor in the UK but there is a european distributor. If you email relaxis they will give you the details. I am having some success with one for fairly severe rls but it is very early days.
Thanks for your quick reply. He's had his blood taken but everything came back as normal. Restless leg syndrome does run in his family, so I imagine it's probably hereditary.
Can I ask what medication you are on? He was recommended one for people with Parkinson's but he's keen to avoid that. Thanks for the advice on supplements. Will definitely look into this. He's having a bit of a diet overhaul just now cutting alcohol and caffeine, so hopefully that helps. I'll also have a look into relaxis, thanks for recommending!
That med is called ropinole. It's horrible! I was on it until 3 days ago. I got so sick from it every night! 3 days ago I heard about Kratom, my husband and I did a ton of research before I gave it a try. OMG! It was totally gone! Seriously! I am literally begging you to try it. Let me know what you think.
Do a search for 'Relaxis' on google and you will find contact details on the web page. Just to warn you, it is quite expensive and doesn't work for everyone.
Sooo... first of all, I never ever go on these sites and never reply to them. However I feel its my responsibility to. Three days ago I saw a post here stating that they have found the holy frail to rls! That was a pretty strong statement! So read what she had to say and it sounded too good to be true. I currently take ropinole. It works but makes me so sick most nights that I end up throwing up. I was really to try anything that was sage. Remember, this was only 3 days ago. Stick with me here. I went out and bought and tried it. OMG! It totally worked. No rls and I didn't feel sick! I'll let you do your own research, it's called Kratom, the red strain. It's a leave powder from Asia. I wish I could scream it from the roof tops. Please let me know what you think.
You say your partner has tried hot baths which made no difference but has he tried Epsom salt baths? Some find magnesium spray on the legs helpful. Leg massage can also help if you are willing to do this?
Sex can work well, that is if he can then fall asleep fast enough afterwards.
I presume he is not taking any of the Medications to Avoid if suffering from RLS. Some of these are listed here: rls-uk.org/treatment/
Hi Jen Jen we all know what you are both going through,lots of us have had rls for years ,hot baths do help try Epsom salts in it but not to much,I know he doesn't want to take docs meds but in the end that's all there is and sometimes it takes a long time to get the med that suits you ,I have had it about 46 yrs and tryed it all at the min I am on the Neupro patch and Tramodol going ok at the min ,I do think sweet things and drink don't help not hard to give up when you suffer from taking it. Good luck to you both single beds next x
Hi Beady thanks for your reply and I'm sorry to hear you've been suffering for so long and I do hope the meds are working for you. Can you tell me what the neupo patch is? Yes we're only in our late 20s so giving up alcohol is quite hard! Also be a shame to resort to single beds but sometimes I give up and think that's what we need! I've suffered with insomnia for the past 10 years so am a bad sleeper anyway so the combination of RLS and insommnia is just a recipe for disaster! If you don't laugh you'll cry x
Well Jen Jen the patch is a dopamine drug which you put on once a day google it It looks as if people are sending you a bit of info good luck to you both x
RLS is a result of low dopamine levels in the brain. It runs in my family so I have done a lot of research. I also have it. I take Requip and it keeps my legs calm at night. But it does cause weight gain. I have gained 40 lbs. on it. He could try a natural alternative .
Thriftygirl just to point out those with RLS dont have low levels of Dopamine.Infact when brains have been studied it postmortem it showed we actually very often have higher than average Dopamine levels .It is the receptors which transport the dopamine around the body which are faulty in RLS .Pippins2 x
I bought a spare fold up bed when it used to be bad. We also sleep in twin beds in hotels ( just push them together to make a double) but at home we bought a memory foam mattress which doesn't move when he does. He also takes folic acid, vitamin b and an iron and vit c tablet before bed each night, practices food combining, has reduced coffee intake, eats steak once a week and doesn't eat chocolate before bed. All of these behaviours have reduced the twitching...I wish you good luck! I feel your pain 👍
Hi Chirpy, I truly believe you have zeroed in on the best possible non-med treatment protocol out there. Proper food combining by day = better digestion, and probably less calories overall. For many people there is a link between digestive well being and brain well being. So you guys got that covered. There have been a few random studies showing improvement in RLS with folate supplementation. The latest recommendation is to take methylfolate rather than folic acid because it's more broken down and bioavailable. Of course my favorite and only "emergency" med is the iron in the form of ferrous bisglycinate. It has NEVER failed to stop an RLS attack in it's tracks in one hour, provided I take it on an empty stomach. The iron patch also works well for me but it contains 45mg of ferrous bisglycinate (along with vitamin c and a) but I feel that I should stick with 25mg. But for people who aren't getting good results with the oral ferrous bisglycinate they may want to give the patch a try. Like I've said on here before, if you like the iron then after a few nights of using it you must get your doctor's permission to continue. Hope JenJen is listening
Hello thanks for replying! Can I ask what food combining is? I'm concerned that with his iron levels being normal, it would be dangerous to increase his iron levels? Can you tell me what the patch is too? Sorry! New to all of this!
In terms of food combining my understanding comes strictly from the perspective of the stomach. Protein and fat, especially animal based, wants to spend a long time in the stomach being broken down by stomach acid. Fruits, most vegetables, even grains, spend little to no time in the stomach and runs right to the small intestine where enzymes, not acids, break them down. Can make you crazy and most doctors will say it's nonsense. Yet, I do follow this to a certain extent. Fruit is always a snack eaten away from meals, never with. Bread is a treat, not an everyday event. About 50% of my calories comes from raw vegetables and some cooked, about 20% from fish and the rest from fruit, grains, seeds, rice, cheese and chocolate. It is the only diet that has made a significant difference with my IBS. The more raw the food the better. It will practically digest itself. For me there is no comparison between 6 ounces of raw fish and a 6 ounce steak. Steak seems to sit in my stomach forever, but that raw fish - well I'm hungry in an hour. I am working on eating dinner earlier. It is my biggest meal of the day and it shouldn't be. If I eat to the point of my stomach feeling too full the RLS almost always kicks in. As the full feeling dissipates so does the RLS. But a little RLS will usually linger so I run for the iron.
I have the red blood count of a man, over 13, and woman are generally around 12, and my iron stores are slightly over 100. But my brain and your partner's brain is anemic - no stored iron. That might very well be the definition of RLS - an anemic brain. Researchers believe that this brain anemia may have led to our lousy dopamine transport system. All of this has been imaged on PET scans and via autopsies. It is what it is and by day my dopamine transport system works darn fine. So right there it tells me that I'm never going to use a hammer (DAs, opiates, gaba, or even iron infusions) to kill an ant. I'm going to use 25mg of ferrous bisglycinate capsule instead of the aforementioned. I tried the iron patch, not for myself, but for people on here who don't get complete relief from the capsules, possibly because they can't absorb much iron from the GI tract. Even in a young healthy individual only about 40% of that capsule gets absorbed. Someone with impaired absorption may get even less and thus a patch might work better. So I tried the patch before recommending it on here in case it made me sick or had some strange side effect.
To answer your question about iron I am not too worried about iron toxicity because I'm only ingesting about 10mg (25mg x 40%). Plus my iron stores are checked annually. Anything up to 300 is within the normal range. If my stores suddenly jumped to 200 or 300 then I would think twice about taking that 10mg. And actually, when John Hopkins infuses people with iron (1000mg in one shot), it is my understanding that they do a jig when they get someone's iron stores up to 200++. This is the thing, the bisglycinate costs about $6 on Amazon and if your partner tries it and likes it after a few nights he must contact his doctor and get his permission before continuing on after two or three nights.
So this is my story, about 10 years ago when I was in my early forties I decided it was a good idea to start taking melatonin. My lifelong RLS had always been mild and intermittent, even during pregnancy. Shortly after starting the melatonin my RLS became the devil incarnate. I think I went about 3 nights without sleep until I read on the internet "to just take iron at night." Because I have a sensitive metabolism I went to the health food store and bought an iron called "Gentle Iron." It worked that night and every night until I ran out one day and the health food store was closed. I went to a local drug store and bought ferrous sulfate figuring I would rather be constipated than sleepless. I saw that this type has 65mg per capsule. I thought wow I'll sleep good tonight. Sleep did not come. At some point around 3am I think I took a second one and eventually fell asleep. I bought the Gentle Iron (aka ferrous bisglycinate) once again but I experimented with the ferrous sulfate (with vitamin c to help absorption) but it still never put a dent in my RLS. And the Gentle Iron would not work if I took it during the day, it has to be right when I get the attack and when my stomach is empty. And it only works for one night. The patch works even with a full stomach :).
By the way, when I upped the melatonin from 1mg to 2mg or even 3mg I found that I had to take two capsules of the ferrous bisglycinate. That's when I thought to myself that it was getting ridiculous and I did more research and realized that the melatonin was aggravating the RLS. The day I stopped the melatonin is the day my RLS went quiet.
So there you have it. Life is strange. If I didn't have IBS then I would never have bought the Gentle Iron and I would never have gotten relief. Then maybe I would have turned to a hammer.
in reply to
So with food combining holistic doctors will tell you to never combine animal protein and fruit at same time or protein and bread at same time. You can eat protein and vegetables at same meal or vegetables and bread at same meal. Supposedly you're not even supposed to combine fruit and vegetables at same meal because they require different enzymes. Who knows???
Hello, thanks for your reply! We are actually going to look at new beds this week as our cheap Ikea one is probably making things worse! Did you find the memory foam makes a difference? You say he eats steak once a week, is that a reduction of red meat or does he deliberately ensure he eats red meat once a week? I'm really hoping some lifestyle changes will help him so he doesn't have to resort to medication! Thans.
The bed only impacts on my sleep - he can move and I don't feel it. He says it doesn't alter the RLS (he thinks). The eating red meat is to increase his iron and vitamin B.
The post above listing all the different supplements is very useful too.
My advice is to Keep trying and remember while some symptoms and cures work from r some, RLS is still quite individual so keeping a food diary helps too to work out what aggravates the behaviours.
E.g. My partner has discovered:
Heat aggravates it, beer can too, chocolate at night too prevents a peaceful sleep as died too much coffee.
Hot baths in Epsom Salts works and calf and foot massages too.
I don't know where you live, but kratom is legal in most places (although not England) and it is wonderful. Lots of info on it here, and all over the internet. I've used it for almost four years. Works great for me.
Don't be put off unduly by the fact of Mirapex being a Parkinsons medicine. The dose regime for Rls is much much less than for Parkinsons.
You should be started at .o88 and work up every three days by that amount untill you are getting relief. You should not take more than .25 and if that doesnt work or starts proving ineffective after a while ( between a few months and more than 10 years) do not increase the dose but get a completely different medicine.
Come back here if and when that situation arises for further advice.
Thanks for your reply. He's been referred to a neurologist so I'm hoping they will best advise and hopefully alieviate any concern around taking medication.
If some nights are worse than others make a diary. Note what you ate, drank, did, times etc to find your triggers. Spicy food, alcohol, sweets, late meals, stress, driving long distance, are all triggers for some. Potatoes are one of mine and took a while to discover! Good luck...
You should get the actual figure for the serum ferritin - what is 'normal' for a normal person can be way too low for rls. Iron levels are VERY important in managing RLS.
Kratom is fantastic. It is a plant from South East Asia and is usually in powder form. You don't need a prescription to get it - is that your boyfriend's criterion? It probably would still qualify to be described as a drug.
The parkinson drugs (ropinerole, pramipexole - also marketed as mirapexin - rotigotine etc) work amazingly well but there is a catch - eventually you will start to need more and more of them and at that stage they have started to actually sort-of feed the condition in a phenomenon on known as augmentation. You need to be very careful not to exceed the upper limit recommended for RLS (NB: not the upper limit for Parkinson which is much higher). This will be 0.25mg for mirapexin. You would need to check the others. Good luck.
Also as others have said do check the list of pharmaceutical and other factors that exacerbate rls to make sure he is not inadvertently worsening his symptoms.
I sympathise with you. My wife used to wonder where all the bruises came from but we faound it was I kicking her around while she slept. I claim to be innocent on the grounds I knew nothing.
I had RLS for about 55 years and then it started to become serious as I aged. Mother and father both had the same problem. We knew it had something to do with food or digestion and used a dose of sodium bicarbonate to get rid of it until doctors warned that was too much sodium.
I found that a gluten free diet helped and the FODMAP diet helped even more. Just recently I have been trying the next stage which is a low chemical diet developed by the Royal Prince Alfred Hospital in Sydney, Australia. ( slhd.nsw.gov.au/rpa/allergy... ) I started this diet about three weeks ago. No change for two days, much worse ( zero sleep) for the next two days and then I slept through each of the next 16 nights. I haven't done that for about 20 years.
OK three weeks is too early and one patient is not enough to call this a victory but its an improvement and worth trying the diet even if the diet stops working tomorrow. If you have found a connection between what you eat and how you sleep then this diet might be for you. I know its not a universal cure and some people can't diet but its worth talking to your doctor about. If he says its impossible talk to another doctor but just give it a fair go.
I should explain that the chemicals are not just man made. Some are added by man and some just grow with the food. For example greenish bananas are OK but ripe bananas develop a chemical that might upset you. Rare beef is good - well done has chemicals.
I have to go in a few minutes but I recommend you read up on the FODMAP diet by searching this forum. At least one person on this forum has found relief by adopting the FODMAP diet so it works for more than one. Its entirely possible that the easier FODMAP diet will be sufficient for your RLS
Remember this is not a diet for life. You couldnt survive on it. The intention of both the FODMAP and the low chem diet is that you exclude as much as possible and if things indicate that you are better (ie no RLS ) then you introduce one new food. If you don't have a problem with the new food then you can try another food until you build a list of foods you can enjoy without punishment. Its not only the type of food but the amount that matters. You might start with an orange per day and find that's OK so you might choose to go to two oranges per day but bingo RLS comes back so you know you can eat an orange per day and you move on to something else. For this stage you really need a dietician to help so you can learn about what food contains which chemicals and the total amount of each chemical that is your limit.
This is a diet that has been prepared by scientists who understand these problems. Its going to be a whole lot easier for you to follow this routine and learn your intolerances than start deleting various foods at random. Some foods will contain more than one chemical so it can get pretty complex. Its a sytematic approach and the best thing is that if its going to work then you might have complete relief in just a few weeks. BUT you must not cheat! Not even a little bit. Not one cup of coffee with caffiene. Not one block of chocolate. A friend of mine who was on the same diet for another problem was told that licking the tomato soup spoon would mean going back to the start of the diet. There is now a good supply of lactose free milk available and I eat lots of rice cakes and Camembert cheese.
If your interested let me know and I will give more details.
Hi Graham, thank you so much for taking the time to write this post. We hadn't really considered that food might be affecting it, but from everyone's posts, it sounds likely. I'm hoping once he is referred to the neurologist we'll have a bit more insight, but it'll likely be a long wait with many sleepless nights in the meantime!
I paid a neurologist $350 to tell me there was nothing "they" could do for me and smugly scoff at the notion that it was food related. While waiting for the expert advice try the FODMAP diet or the Low chem diet. Restful sleep might be only a few nights away. The Fodmap diet took a couple of weeks to start working in my case but in some other cases its been immediate. I think you can probably start a FODMAP diet with just a visit to the doctor to make sure there are no issues that might be upset by a fairly restrictive diet and then do it yourself. You might even ask him what he thinks about the low chem diet and see if you can get a dietician on short notice.
hi Jen Jen you have had a lot of good posts,most of us have been to a neurologist so please don't get your hopes up they aren't very clued up on rls mine were useless ,learn all you can on the forum we know what it's like ,as for the beds you can get those that clip together so you are still together but when legs start you can get your own side I wish you well x
There is a therepy that has had good reults on a small trial called Postitional Release Manipulation. It is done by an Osteopath who is specially trained to do this. You will have to ask around to find out who does it in your area. This is one in my area who I am going to be going to next month. monkmedicalgroup.co.uk/rest... There is quite a lot of info on their website and if you are too far away they may be able to help you find someone in your area. They say it takes about 4 to 5 treatments and claim a 90% success rate. I am hopeful it will help me. and will post here when I have completed the treatment. It is mentioned on The NHS website. One thing I have always found that helps me when things are bad is to go and sleep on the sofa lying on my side and pressing my feet against the arm . It stops the twitching and calms the urge to keep moving them. It also allows my husband to sleep undesturbed by me. Good Luck!
With you on this one-- I often find lying with my back tight against a wall and feet pushed hard against the footboard helps calm the jitters.
It's such a weird affliction and everyone seems to have such different experiences .
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I'm new to this group as well, and the diet advice is really interesting. I take gabapentin and codeine, which lessened the symptoms but still had periods of pain. What’s worked for me is either a) no coffee or b) just too cups before 12/1pm. If I go above or below two cups I’ll feel it that night or the night after, same if I drink coffee after 1pm. It’s the same for alcohol, if I don’t drink for a month I’ll be in pain after a pint, but fine if I drink a pint a night. Agony on the now rare occasion I go on the tear. It took a lot of trial and error to find what works for me, and still want to try new things because don't want to be on these drugs for ever.
U have to get on medication. Gabapentin is the first and least side effected recommend by doctors.its a sedative and helps sleep and the legs works wonders
I have severe RLS in my arms and legs. I've had it my whole life but has now peaked to an unbearable sensations when I reached 40. I have constipated cutting my arms & legs off at times. I get them every single night like an alarm clock. I take iron, magnesium, drink lots of calcium, take hot epsom salts baths, massage. Idk if these help, my symptoms are still the same. I ended up having to take mirapex. Which has a huge impact on my evening routine with my kids. After about an hour 1/2 to 2 hours after taking it, I fall asleep suddenly, but without it I cannot stand how I feel, so now I'm taking Adderall to off set the mirapex. I also, find it relaxing to smoke marijuana, it doesn't take away the feelings but it does distract my mind and helps me relax. I know there's a new patch for RLS, but it's brand name and around $600.00 per patch and who can afford that, not me. Which makes me upset because everyone with dabilitating heath issues should have access to the drugs that can change thier life. If I don't take mirapex by 5 pm, then I'm in for a horrible nights sleep. My boyfriend scratches my back at night, that helps me relax, and I also found relief using a heated mattress pad. That is the best investment I have made so far yet! The heat helps my legs relax. Hope that helps you somehow.
It is nice to be back. I am sorry you have restless legs I. Have had RLS for years but still suffer not so bad I am on pramipexole 0.088 I take 2 about 20 hrs before bed with 2 codeine I suffer with cold feet slot which there was something for it can you help Tony
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