I'm 34 years old, I've had RLS for as long as I can remember. I've never had a formal diagnosis as I only get symptoms about once a week or once every 2 weeks. My mum had RLS too.I've had blood tests in the past and recently which show my iron levels are good. I was diagnosed with B12 deficiency over 5 years ago but this is well controlled now.
Just wondering what people's tips are for helping to relieve RLS symptoms?
I know my triggers are being tired, having cold feet, being on my feet too much/walking alot and alcohol.
So far the only thing I've found that helps is a tablet that was discontinued years ago called "elasto", so unfortunately I can't get hold of it anymore; avoiding my triggers when possible and wearing socks in bed.
Does anyone else have any tips please?
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Teaandcats
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Scroll down to 'useful resources'. The Iron therapy sets out what your serum ferritin Levels should be.
Most UK GP will have no knowledge of RLS or what blood tests are needed. They'll tell you results are 'good' or 'normal'. But RLS patients need much higher iron than the general population.
So if results were recent- post them.
Raising serum ferritin above 200ųg/L ideally will resolve the majority of RLS.
In your case, you will need to make sure B12 levels are above average as well.
There are also many meds that trigger RLS. They're listed on the website.
And Whatever you do- do NOT let the GP prescribe dopamine agonists (Ropinirole, Pramipexole or Neupro). They work miraculously at first. And then they make the symptoms much more severe.
SueJohnson will be along soon to give advice on lifestyle measures that can improve symptoms.
For occasional RLS- you could ask for 30mg codeine. It would stop the RLS and let you sleep. And it would not cause addiction or tolerance.
Wow. That is extremely low for RLS.If your transferrin % saturation is under 48%- start supplements now.
You can get free on prescription by educating your GP and referring them to NHS and NICE guidance, both of which require GP to prescribe iron supplements if serum ferritin is below 75ųg. The UK is around 10 years behind the latest research and treatment protocols as set out in the Mayo Clinic Algorithm and the newAmericanAcademyofSleepMedicineGuidance. RLS-UK follows latest research and is campaigning to get RLS taught properly to UK doctors.
You can also buy ferrous bisglycinate from Boots or Holland and Barrett or online. Take 2 pills every other day as it stops hepcidin, a natural chemical, from blocking iron absorption.
Most women are iron deficient without anaemia so you will benefit from taking iron supplements.
And your RLS will probably improve dramatically after 2 or 3 weeks of iron tablets.
Any of your family with RLS should get bloods and raise serum ferritin.
"That's lower than a snake's belly in a wagon rut!"
My ferritin was 49 with raging, severe RLS - docs said nothing to see here. I eventually found recommendations on The Johns Hopkins Neurology website "Ferritin levels below 50 can benefit from iron supplements" Almost immediate relief with ferrous bisglycinate chelate.
Show this to GP. The figures for serum ferritin are way too low ( as previously stated- UK is 10 years behind). But your serum ferritin is below NICE range so you can get free ( NHS charge) iron prescriptions from GP. Prescription may be cheaper than buying ferrous bisglycinate from chemist.
Joolsg thank you for your replies. I've had a read of a few things and it's all really helpful! Maybe I might not have to suffer at all, any more! I've been out for a meal and had 2 cocktails this afternoon and I can feel both my legs are going to be troubling me tonight... my fault for enjoying a few cocktails with my meal!
Alcohol is a trigger for many. But if you raise serum ferritin above RLS-UK recommended levels- it might not affect you.Buy some ferrous bisglycinate tomorrow.
Many on here report that they completely control their RLS by taking ferrous bisglycinate every night just before sleep with vit c.
You may be one of them.
Others need serum ferritin levels to rise first before they start to see benefits. Taking oral iron can take months/ years to raise levels.
Iron infusions work much more quickly.
RLS-UK is campaigning to raise knowledge, in the hope that iron infusions will become routine first line treatment ti raise brain iron more quickly.
You can also try magnesium citrate. This helps many people- although there are no studies that back this up.
Learn all you can. Become an expert. You'll receive better treatment that way.
Thank you. Il give the iron supplements a go, it actually works out cheaper to buy them than get them on prescription.I bought a body cream with magnesium in to see if that helped but it made no difference.
On taking it every night since you don't it every night you won't know if that works and it only works for a few. It stops RLS completely for that one night only. For raising your ferritin take it every other night as I indicated.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate 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, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, 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, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. As Joolsg said your ferritin is very low. Take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every day at the same time so it is at least 24 hours apart since when you take it hepcidin is released which prevents iron from being absorbed for up to 24 hours, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If your transferrin saturation is below 20, you may need an iron infusion. If you take magnesium, calcium or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.
For more information I recommend you check out the following sites in addition to the RLS-UK one
I also recommend you join the Restless Legs Foundation at rls.org. An international membership is $40 and they have lots of information on their site and a monthly magazine.:
RLS can be caused by inlammation of the nerves, this inflammation can be caused by food, therfore try to spot a pattern of when the rls comes on and what you ate about half an hour previously. Common causes are sweet foods or foods rich in refined carbohydrates like white flour. Obviously if you notice a pattern you hould avoid those foods.
I'm very interested to know what was in the Elasto pills I see that they're an old remedy for varicose veins but can't find any information on the ingredients. Perhaps you're lacking in whatever it is they contained.
So they were a remedy for aching legs and feet. They didn't stop the RLS attacks but once I felt the symptoms coming on they completely stopped them. It's looks like New Era combination P are the closest to them that are still available. I might give them a go now that I've found a similar thing. New Era used to make "Elasto" tablets.
dairy and sugar are triggers for me. Along with the other symptoms you’ve mentioned. I’ve been eating lentils every day for a few months, and I think the iron and magnesium is helping mine considerably.
Read about DMSO. It was ban ƴears ago but is now available. I understand it is hard for iron to cross the blood brain barrier. DMSO carries anything across. Try taking iron with dmso before bed.
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