not sleeping re RLS

[Hectorsmum2]

I have had mild RLS for many years triggered by tiredness. Now it has got much worse, keeping me awake at night. I dont want to start on pharmaceutical's if possible and try to avoid doctors as much as I can. My last blood showed that my ferretin was low in range and vit D was fine ( I supplement). I have started some iron. What else can I do?

[Madlegs1]

Supplement your iron as advised by any of Sue Johnson's replies to similar questions.

Keep a food/ intake diary to check for any triggers that might be antagonising your RLS. Medicines included.

Try taking magnesium in the afternoon. About 100 /200 mg of any of the "-ates"

Keep well.

[SueJohnson]

You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS

What was your transferrin percentage (TSAT)? If it was below 20% you need an iron infusion.

Take 325 mg of ferrous sulfate or 25 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every other day, 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 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 tumeric 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 to slowly raise your ferritin. Ask for a new blood test after 3 months if you take iron tablets and 8 weeks if you have an iron infusion. . Be sure when you get your new test you stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible.

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. 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, using a standing desk, listening to music, meditation and yoga.

Keep a food diary to see if any food make your RLS worse.

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.

If none of this makes your RLS significantly better then you will need to take medicine for your RLS. Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex) unless there is some special reason s/he feels you need it. They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead ask your doctor to prescribe gabapentin or pregabalin. I won't tell you how to take it now but if you do end up taking it, post back here and I can give you some advise.

[Hectorsmum2 in reply to SueJohnson]

Thank you for such a helpful and comprehensive reply. My supplements are 5htp, collagen which I will stop to see if it is making things worse. selenium, inosital with chromium and folate and cinnimon. I have some magnesium that I will start. I also inject B12 twice weekly re pernicious anaemia. Medication I take is thyroxine and T3 as well as an antipsychotic called ariprirazole.

[SueJohnson in reply to Hectorsmum2]

I assume you meant aripiprazole. It is probably safe. The others are all safe for RLS.

[Typicallygaslit in reply to Hectorsmum2]

I tried aripipirazole , it kept me awake. 5thp can also keep you awake since it also increases serotonin and we tend to be sensitive to such increases. I did not tolerate inositol either but it might be different for others.

[Hectorsmum2 in reply to Typicallygaslit]

Thank you. I take my 5htp on a morning now, I couldnt do with out it or the aripriprazole. Both help me with issues worse than the restless legs. I have been taking them a long time and only recently started to have real problems with restless legs keeping me awake but thank you for sharing your experience.

[Typicallygaslit in reply to Hectorsmum2]

Just be aware that RLS can start to trouble you more as you get older, and these substances can contribute to the problem. It can be hard sometimes to see what’s causing it.

[LineVec in reply to Hectorsmum2]

Why do you take 5HTP in the morning and not before bedtime? Does it work better then?

[Hectorsmum2 in reply to LineVec]

I dont think it makes much difference to be honest. I think some people find it helps them sleep so take it at night. I am trying in the morning for a while incase it is contributing to me not sleeping.

[LineVec in reply to Hectorsmum2]

Okay thanks. I also bought it once because people recommended it to me. Took it for a while but sadly to no avail.

[Birdland in reply to Hectorsmum2]

I can not take 5htp. Makes my legs go crazy. I think it’s because it promotes serotonin which for many makes RLS worse.

[Joolsg]

One day, iron infusions will be first line treatment for RLS. In the UK, there are now a handful of doctors who know about RLS and the benefits of iron infusions. Several hospitals have given iron infusions for RLS. St George's in Tooting, The Royal Cornwall in Truro.

However, persuading your GP will be an uphill battle.

Prof. Walker at Queen Sq in London and Dr Jose Thomas at the Gwent sleep Clinic in Wales will both arrange iron infusions if appropriate.

Their NHS waiting lists are long. Seeing them privately is faster.

An iron infusion raises serum ferritin much quicker than oral pills.

60% of patients show dramatic improvement after iron infusions, 20% moderate improvement and 20% no change. The odds are very much in your favour.

[careerSquirrel]

It’s so difficult when you have sleep deficit so I can fully empathise. Others have replied with advice around iron levels etc which is sound advice.

The only things I can add is trying the magnesium cream that you can use as an ordinary moisturiser. I apply to my legs before bedtime. I avoid iPads and phones and try and keep a good routine.

Inevitably, the RLS will disturb sleep but please use this forum for advice. There is a great community on here that can support. You’re not alone

[Hectorsmum2 in reply to careerSquirrel]

Thank you. I have ordered some magnesium oil.

[Moonwalker1967]

Can you please let me know which magnesium cream you are using and where you bought it from. I have magnesium spray and it stings unbearably in my legs. Thanks.

[Nightwalker999 in reply to Moonwalker1967]

Hi there, I have magnesium cream from Feather&Down. Amazon. And others, 6 lots, sadly no help for me.

[Moonwalker1967 in reply to Nightwalker999]

Thanks for your response.

[Seaux]

Besides the foods listed below that may worsen RLS, dairy products can also worsen it. I speak from personal experience and also from the RLS.org website.

[Hectorsmum2 in reply to Seaux]

Thank you. I will bear in mind.

[Goldy700]

As well as all the excellent advice given - I can highly recommend medical cannabis with THC for sleep. I also suffer from insomnia and both cannabis oil and vaping the dry herb flower are very effective to create a relaxed state where you can drift off to sleep. I live in Australia where it is easily available and the doctors prescribe varieties that are specific for sleep and relaxation. Worth a try.

[Brownbear1]

Magnesium really helps. If you need more help pregabalin is brilliant

[Hectorsmum2 in reply to Brownbear1]

Thank you. I took some last night and had a much better sleep.

[AHG123]

My experience is much like yours and 4 months of iron tablets have helped me enormously. I am concerned about what happens when I stop taking them as I take antacids which I understand deplete your iron reserves.

[SueJohnson in reply to AHG123]

The Antacids mainly prevent the absorption of iron which is why one takes them them 4 hours before iron or 2 hours after. I assume you know this but just in case you don't: Take it every other day, preferably at night with 100 mg of vitamin C or some orange juice since that helps its absorption. 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 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. Don't take your iron tablets before or after exercise since inflammation peaks after a workout, don't take tumeric 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 to slowly raise your ferritin. Ask for a new blood test after 3 months. To take the test, stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible.

What was your ferritin?

[AHG123 in reply to SueJohnson]

March Serum Ferritin 18ug/L

July 88ug/L

I requested to continue the iron for a further two months as I had read 100 was the magic number. I still occasionally have very mild RLS which is eased by lying on my front with legs stretched straight.

Thank you for your advice.

[SueJohnson in reply to AHG123]

Yes improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. And some people recommend improving it to 200 or 300.

[Sleeplesniights]

I was having very painful restless leg was on Gabapentin but it didn’t work

Started taking cbd oil and it has helped a lot

[Hectorsmum2 in reply to Sleeplesniights]

Thank you. I am doing well on magnesium but if that starts to fail I shall try CBD

[Sleeplesniights in reply to Hectorsmum2]

If you need any advice just send me a message