my husband suffers with RLS badly, every night when he is getting tired and start drifting into sleep he can’t fall asleep as his legs starts playing about.
He vapes, he takes multivitamins ( started recently to see if he has any deficiency but blood test done and he is fine ) he has interactive thyroid which is managed by meds. We don’t eat much processed food, we don’t eat much meat either, fruit and veg daily on point. He drinks sugar free squash as well,
I’m making all this points so maybe any of you can identify if that could be for you a trigger ?
He use everything possible before bed time to prevent that with minimal success.
Epsom salt legs bath, voltatol cream, cbd oil, massaging legs, magnesium, hemp cream, doesn’t drink anything sugary before bed. But the strange thing is that if he has wine he doesn’t have RLS he drinks his wine twice a week and this is when he sleeps fine!
I feel awfully bad for him and I want to help!
please advice if there is anything else we can do to help him?!
Ps. Been to doctors they are not helpful benzos or dopamine intakes are not solution for long term in our eyes so he won’t be taking this
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Martina777
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That’s what I say as well about vape, as this is only one thing he does before bed too, so no sugary drinks or anything else that could potentially trigger his legs, but vaping is a big thing! Trouble is he won’t give up, gave up cigarettes to this 😔 I hate it but I don’t think he will be convinced to quit. Yea wine is honestly a relief for him, which is strange as I have read what is usually the trigger and caffeine and wine comes up first! Well not in my hubby situation!
Yeah i don’t like those free sugar stuff as unfortunately they are more unhealthy than sugary stuff in my opinion, so is full of artificial cra*p. I’m trying convince him to drink more water but oh believe me it isn’t easy 😅
Go back to doctor and ask for the actual numbers from the iron panel blood test.Serum ferritin needs to be above 100ųg, preferably 200ųg. Your GP will say it's fine/normal at 15ųg. Serum iron needs to be above 60ųg/L.
Start iron pills as per RLS-UK website Iron therapy page- it's a printable page to show your GP. It's under Useful Resources.
Also check all meds including OTC meds.
Anti depressants, sedating anti histamines, statins, beta blockers, PPIs, diuretics all trigger RLS.
So raise serum ferritin above 200ųg. Safely switch all trigger meds to safe alternatives.
If those steps don't help, you can see GP to start medication.
The new AASM guidance relegates all dopamine agonists to 'end of life' because of the inevitable augmentation and the very high rates of ICD.
Gabapentinoids are now first line meds. But look at RLS-UK website for how to take them.
Well it was on the day of doing the blooods not sure how quick that can change ?
He doesn’t take any tablets apart of thyroid tablets and general multivitamins. He barely takes any painkillers too, but when he really struggle with his RLS he takes half of the diazepam so is about 5mg and it does help for him, but obviously we don’t want to take that route for life time
That would seem to indicate his RLS isn't caused by low brain iron, but serum ferritin can be high if he had a viral infection.He could try taking a ferrous bisglycinate tablet every night just before bed. There are many people on here who do this and find it completely controls all their symptoms.
We have magnesium glycinate with B6 he was taking this for long time without the success, what is the different between bisglycinate ? I would try for sure! But could you please explain what the difference is 🙏🏻
Alright so should I switch them then, I found some online to buy there are 28mg each pil. But if his ferritin level isn’t low at all do you think is it safe for him to take iron supplement ?
Yes. Professor Toby Richards spoke at the RLS-UK AGM 2 weeks ago and said it is safe to take iron supplements every day.As Lotte has pointed out - your partner has been taking magnesium bisglycinate. Ferrous bisglycinate is gentle iron.
He can continue taking magnesium and add Ferrous bisglycinate. You can buy it online or at a pharmacy or health shop.
As mentioned some people find that taking ferrous bisglycinate at night stops their RLS for that one night only. If it doesn't there is no point in taking it every night.
Welcome to the forum. You will find lots of help, support and understanding here.
On your profile it mentions antidepressants. Many make RLS worse so what is he taking?
Has he had his ferritin checked? If so what was it? If not this is the first thing that should be done for RLS. When he sees his doctor, he should ask for a full iron panel. He should stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. He should have his test in the morning before 9 am if possible. When he gets the results, he should ask for his ferritin and transferrin saturation (TSAT) numbers. He wants his ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and his transferrin saturation to be between 20% and 45%. If his ferritin is less than 100 or his transferrin saturation is not between 20% and 45% post back here and we can give him some advice.
As you said above all he shouldn't let his doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex) or the Neupro patch (Rotigotine) unless there is some special reason s/he feels he needs it. They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.
Instead he should ask him/her to prescribe gabapentin or pregabalin. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). [If he is over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin).] It will take 3 weeks to be fully effective. After that he should increase it by 100 mg (25 mg pregabalin) every couple of days until he finds the dose that works for him. He should take it 1 to 2 hours before bedtime. If he needs more than 600 mg, he should take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If he needs more than 1200 mg, he should take the extra 6 hours before bedtime. (He doesn't need to split the doses on pregabalin) Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)." If he takes magnesium he shouldn't take it within 3 hours of taking gabapentin (OK for pregabalin) as it will interfere with the absorption of gabapentin and he shouldn't take calcium nor calcium-rich foods within 2 hours for the same reason (not sure about pregabalin). Have him check out the Mayo Clinic Updated Algorithm on RLS which will tell him everything he wants to know including about its treatment and refer his doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...
Gabapentin/pregabalin is also used to treat fibromyalgia.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, , dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If he is taking any I may be able to provide a safe alternative.
Gosh thank you so much for such a detailed response!
Masturbation got me cackle a bit 😭😅
So this is my profile I take antidepressants and all other stuff, my husband don’t suffer with anything else apart of that horrible restless legs syndrome.
So his ferritin is 240ug
It was at least on his last test over a week ago, he had a test done a bit later so he definitely had a coffee before that but they never said anything about fasting so not sure if that could interact with it any way ? His bloods looks good in general.
He tried pregablin previously and unfortunately it doesn’t agree with him, he was suicidal and really really down. He doesn’t want to try dopamine as we have read about many side effects so that’s why we are trying to find a way that would be the most natural possible, we have tried lots of things from your list but not all, so I will suggest that to him! Even a bloody masturbation 😂 if would help that would be fab! Thank you so much
I sent for a device called Therapulse its around £39.99 .You wrap it around your leg and it vibrates ,it had different settings,.I use setting 4 which is a on /off pulses If I put it on as soon as I feel myself dropping off to sleep it sometimes helps .I didn't bother with all the build up it suggests using for 10 minutes a day and building up I just whacked it on .It's rechargeable and lasts around 40 minutes. I have 2 so always have 1 charged or sometimes use it on both legs at the same time. Its not a fix all but definitely helps .If I have to get up during the night I walk around a bit then get back into bed with Therapulse on and usually get to sleep so worth a try .Pipps
You n your hubby's situation sounds like a mirror image of ours in that he also takes thyroxine, has tried everything you've mentioned and vapes (much to my disapproval but hey ho they need something to keep them going, eh). He has also gone down the dopamine agonist route (DO NOT GO THERE!) He's tried pregabalin, not good for him and gabapentin more recently. He takes iron bisglycinate to up his levels. Finally, we got a private appt. with neurologist a few weeks ago n got buprenorphine patches, exactly what he wanted after much research. These are opioids but the low dose you need means they don't become addictive. Three weeks down the line with these, and a small dose increase has resulted in him getting 7-8hours sleep each night. We're keeping everything crossed that this continues. It may be worth looking into this for your husband, whatever you do I do hope you find something that works. It's a horrible syndrome that no one seems to understand, and us spouses are left feeling hopeless as to how to help. Good look n stay positive.
Thank you for this comment. My husband tried prega and is a horrible stuff, made him only feel suicidal same for me when I tried for fibro, is just a horrible pill!
We do try half of the diazepam sometimes at night and it does help him.
May I ask why did he go to neurologist ? Or can it be any private clinic to be able to get those patches ? I assume gp’s don’t prescribe them ?
We were referred by GP to see NHS neurologist but there was a 10 month waiting list! From reading this forum we realised that neuroligsts seem to be more informed than Gp's, so we decided to get a private appt. to avoid the long wait. (When you're tired you just need a quick solution!! ) From this he sent a recommendation to our GP that Buprenorphine should be considered. Surprisingly the GP agreed to prescribe. Most GP's wont prescribe as it is a red list opioid drug, but the neurologist sent a brilliant letter to GP to argue the case. He started on 5mcg/hr then needed to increase to 10mcg/hrs after first week. This is still a relatively low dose and there's room to increase further however so far this has been effective. The money paid for the private appointment has definitely been worth every penny, if you can go down that route I'd defo recommend it.
Oh yeah I have been considering private service for myself too for fibro and depression as I’m not getting what I need from basic GP, how much did you pay for private ? Also was it hard to find it ? Or mr google will just come up with 100 of doctors near by ?
just a couple of comments. Firstly anything with aspartame or other artificial sweeteners is deadly for RLS. They are excitotoxins as is glutamate, so he also needs to avoid intense umami flavours such as slow cooked meats, mushrooms, yeast flakes, soya sauce etc. Read Excitotoxins:The Taste That Kills by Russell Blaylock. Secondly, I also believe that all the recommendations on this wonderful site about iron are excellent. In addition to a clean diet getting iron intake correct for each individual is the nearest thing we have to a cure. Good luck to you both.
Like you, my husband is the RLS sufferer and I do the research! I well understand how badly you feel for him. I can only give you the triggers that we have discovered cause my husband's RLS and they are the ones I read mostly are considered the 'healthy' diet that should be relieving his suffering. FRUIT AND VEGETABLES.
The other vicious trigger is phosphate found in prepared meats (rotisserie cooked chicken, any pre-cooked prepared delicatessen meats containing phosphates).
All veges and fruit contain OXALATES and during my extensive research I discovered that they are often a trigger. So, once again back to experimenting. We first had to find out what fruit and veges contain the most oxalates and eliminate them and to our astonishment he had his first somewhat peaceful nights in years.
Since he has been on an Oxalate low diet AND avoiding phosphate (I read all food labels before purchasing pre-cooked foods) he has been much better. However, I must mention that his RLS was diagnosed as intractable it was so severe and he is also on 0.2 mg buprenorphine as well.
Same with the alcohol, everywhere you look it says this is a trigger for rls but not in my husband case, completely opposite he sleeps like a baby after few glasses of red! I truly don’t believe in most stuff j read on internet anymore or specifically on the NHS websites as they always trying to pin any illness to your life style: oh you are too fat, oh you drink too much, and also smoke and don’t exercise or do too much workout! In my experience majority of doctors as you call them were really bad and constantly misdiagnosed everything 🙈🙈 as you said intense research reveals a lot more, very interesting about the fruit and veg I will have a look into this. Also the tablets your hubs is taking are they form of benzos ?
I'm so sorry for you husband I've had RLS for years. My triggers are anything with artificial sweetness, chocolate, tea at night I only have coffee in the morning. Also it seems to help me it I get a bad flare up is heat pads on my legs and arms. I hope this helps him prayers going up for both of you.
Perhaps it could be caused by sugar free squash. I used to have no triggers but as I have gotten older can no longer tolerate artificial sweeteners. Try to keep a food diary and omit possible triggers one at a time. Hope you discover the culprit, it is annoying to find the right medication and then relapse
What triggers RLS is usually some food which causes inflammation, this could be refined seed oil (what's called 'vegetable' oil), refined carbs like bread, biscuits, cakes and pasta, fruit juice and even the wrong type of fruit. He should avoid thing like seedless grapes and oversweet modern fruit varieties of appleas, bananas etc. The safest fruit is blueberries which are not oversweet, high in fibre and contain antioxidants. Next best are any sort of berries.
Some foods and vitamins have anti inflammatory properties e.g. oily fish like mackerel, sardines, herring and wild caught salmon. Green tea has anti inflammatory properties. Vitamin D has anti inflammatory properties as well as being good fot the immune system and mood, also tocotrieniol vitamin E.
I've completely eliminated my RLS without meds by concentrating on lowering my systemic inflammation. I haven't found one cup of coffee per day to be any problem at all, it might help.
Someone has mentioned about oxalates in some veg and fruits that for some is a trigger, I will have a look into this as grapes, bananas and apples this is what we both eat daily really, so might try switch the fruits first and see, basically elimination diet I think is a way forward
Also be careful if you eat any processed food at al like margarine, fruity drinks, some wines, dips ans sauces, some of it contains artificial preservative (E202 or potassium sorbate) which sets me twitching even in small quantities.
After stumbling on long suppressed and unknown childhood complex trauma that I’ve been working through the last three years now as 60 something it’s very clear that in my case, my RLS is directly linked to this trauma.
Modern trauma healing recognizes that trauma is stored in the body in various places and the healing it’s all about the mind, the brain and the body. In my case, and in a lot of trauma suffers, it’s in my right psoas and related muscles. As I’ve worked through this, the psoas has calmed down and so has my restless leg. It’s a direct link to the restless leg, going down that my right leg.
I’m taking less and less meds, which in my case is oxycodone, low-dose, and I expect to be off it completely in the next six months as I go through the trauma treatment process.
So this experience has me wondering about the mind-body connection to RLS broadly, and within emotional and physical trauma.
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