I've been dealing with RLS since 2023, and while my GP recommended iron supplements to address my low levels, I’ve achieved normal iron levels, yet the symptoms persist.
I can manage the symptoms when awake, but it’s the sleep disruption that’s becoming a real challenge. Since 2023, I haven’t had a full night’s sleep, and I’m really struggling with the impact on my daily life.
My GP has now recommended starting medication, but before going down that route, I wanted to reach out here to hear from others. Has anyone found any successful alternative treatments or strategies to manage RLS without relying on medication long-term? I’d love to hear your experiences.
Thanks in advance for any insights you can share!
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Ezzzzie
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If you have RLS, I wonder what triggered it comparatively recently?
The first thing that should be checked are your iron levels: when you say that your iron is 'normal' what are the actual numbers? A doctor's view of normal is often inadequate to stop RLS. UK doctors have not been trained in diagnosing and treating RLS and rely on outdated guidance.
A fasting full panel iron test will show your serum ferritin and transferrin saturation numbers. Improving these helps the majority of sufferers: please read this paper on iron therapy:
Get the actual numbers: do not just accept a doctor's "it's normal" response.
I never had low ferritin, and still not knowing what was triggering my symptoms I found taking magnesium citrate daily helpful: it stopped my symptoms within a week or so. But I'll come back to this as I no longer believe that it should be the first step after iron: after a while I still had severe breakthrough RLS despite the magnesium.
I eventually found through this forum that I was taking various triggering medications. Please read this piece on medications to avoid:
I stopped - with doctor's agreement - taking statins (and sedating antihistamines), moved to safer alternatives, and my symptoms were hugely reduced.
But I still had periodic symptoms, and finally realised - by keeping a food diary - that I had dietary triggers as well. These can vary, but this is what worked for me:
Reducing but not totally eliminating sugary foods and drinks, particularly in evenings
Cutting out 'diet' drinks and foods - the artificial sweeteners, particularly aspartame, were triggers. Sucralose, saccharin etc are lesser triggers; Stevia seems relatively safe.
Reducing but not eliminating caffeine, particularly in evenings. (Caffeine actually helps some).
All sorts of things can be triggers: others have mentioned things like MSG and spicy foods...
[I no longer take magnesium, but when I did I took up to 600mg spread through the day to minimise laxative effects. I found citrate more effective than magnesium glycinate, but the latter seems to help people with more bowel issues than I have. (I have post-radiotherapy proctitis of the bowel and diverticular disease)].
It's undoubtedly true that some people do need medication to treat RLS. Your doctor may or may not be up-to-date with recently changed NICE advice: you must NOT be started on dopamine agonists - pramipexole, ropinirole or rotigotine - as they work for a period (weeks, months or years) and then make things far worse. Come back here for further advice before starting ANY drug treatment for RLS.
Welcome to the forum. You will find lots of help, support and understanding here.
I hope you can find something but in most cases medication is the answer. I will give my usual advice which repeats some of the things Chris said but has more information.
Have you had your ferritin checked, not just your iron, ? If so what was it? If not this is the first thing that should be done for RLS. When you see your doctor ask for a full iron panel. 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. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. 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 and you want your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.
Above all don't let your doctor prescribe a dopamine agonist (DA) like ropinirole (requip), pramipexole (mirapex)or Neupro (rotigotine) 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. NICE in the last couple of days has changed their recommendation to say gabapentin/pregabalin should be prescribed and not DAs so print that out and take to your doctor as most doctors will want to prescribe a DA.
Instead ask your doctor to prescribe gabapentin or pregabalin. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with 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 you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium nor antacids within 2 hours for the same reason (not sure about pregabalin).
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor o it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...
Meanwhile 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, 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.
By the way it would really help us to give you advice if you would indicate on your profile any other health conditions you have.
Show your GP the new NICE cks guidance amended recently.
Your serum ferritin had to be above 200ųg ideally. So 'normal' levels actually isn't good enough. Push for an iron infusion before you agree to meds. Meds are needed for LIFE so avoid if possible.
Raising serum ferritin via iron infusions resolves the majority of RLS.
A private infusion costs around £800.
Also review & replace all trigger meds. See RLS-UK website- medications to avoid.
If raising serum ferritin above 200ųg and replacing trigger meds doesn't help- then you can discuss starting pregabalin or gabapentin at NIGHT only as per RLS-UK website.
Raising serum ferritin via iron infusions resolves the majority of RLS. Uhmm - it helps up to 60% and in some completely eliminates their RLS. If you say that people who can't get an iron infusion through their doctor and can't really afford to pay for it might borrow the money which they also can't really afford based on false hopes.
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