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 UK doctors have not been trained in diagnosing and treating RLS and rely on outdated guidance.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.
Yes, the drug they want to put me on is ropinirole. So from what you say here, I will definitely refuse it.
I looked at the RLS symptom checklist, and I tick all of them, so I think I definitely must have it.
I have a bit of a strange theory about why I developed it, which may or may not be correct. I reduced my calorie intake and lost weight. But in order to cope with the hunger pangs I drank lots of black coffee, which I found helpful to reduce the hunger.
Then I started getting RLS when I lost weight. I stopped drinking caffeinated coffee, but drank loads of decaff. Then, recently, I cut out the decaff altogether, and there has been an improvement for some reason. Before I cut out decaff, I would wake up between five and ten times a night and be really awake each time. Now that I have stopped drinking any coffee at all, even decaff, I wake up about three times in the night and I am a bit sleepier when I'm awake. It is still very disruptive though, because each time I wake up, it can take an hour before I go back to sleep again. But at least I feel I am resting a bit now when I'm awake, if that makes sense.
I looked up my last iron levels and they are 82.2 ug/L, which the Dr said was normal and I should stop taking the iron supplements and go on ropinirole. But that paper you kindly sent me says: "However many RLS patients need levels above 300μg/L and haematologists regard levels of up to 1000μg/L as safe." So that's a real revelation and I will get back on the iron supplements straightaway. And I will have the paper to hand when I next talk to the Dr on the phone. It may cause some consternation, because they seemed to imply than anything above 100 ug/L makes no difference to RLS.
In terms of diet. I have pretty much cut out all ultra processed foods and artificial sweeteners, etc.
Thank you so much again for your helpful response.
Most RLS sufferers benefit from increasing their serum ferritin above 100, preferably over 200. (Don't get too distracted bythe statement about haematologists being OK up to 1000 - this in my view needs a little qualification: getting above 300 is most unlikely unless you have an iron infusion [or an inflammation of some kind], and a haematologist would have to know why levels are reaching this level and expect levels to fall rather than stay that high). The transferrin saturation (TSAT) percentage must also stay under 45%.
You might like to draw your doctor's attention to the only very recently revised NICE CKS guidance on the management of RLS. This is still not totally up-to-date with latest research and practice, but it is a substantial improvement.
It talks about iron - in insufficient detail - and other lifestyle choices before talking about drug treatment which is good, but the big change is moving away from dopamine agonists like ropinirole as first line treatment except in exceptional circumstances. It is unfortunately still weak in guidance on how gabapentinoids should be prescribed for RLS: Sue (who with Jools, also below, the most experienced and prolific forum members) spells out the correct methods in her reply below. Anyway, here is the link to NICE:
Unfortunately NHS guidance has not as yet been updated to reflect the new NICE guidance, so this may not have reached your doctor yet.
It's unfortunate that until now UK doctors - and even neurologists - have not been taught about RLS and have relied on outdated NICE and NHS guidance. It's therefore good news that the RCGP has just announced that it will be included in the curriculum from later this year: hopefully they will incorporate even more of the latest research and practice, such as that in the latest clinical practice guideline from the American Academy of Sleep Medicine (although I'm not holding my breath!)
Thank you for this brilliant supplementary answer. Hugely appreciated. Kind of worrying that it is the consultant behind the GP who suggested going straight onto ropinirole after reaching 100 ferretin levels. But hopefully this will change with the new guidance. Thanks again. I am so glad I touched base with you guys.
Don't be too surprised about them wanting you to start ropinirole. My neurologist in Belgium has been trying to get me to start Pramipexol (a drug in the same class) for the past year, despite me telling her and showing her that this is a bad drug and is not recommended anymore. Good luck!
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.
There is no reading in my test results for transferrin saturation (TSAT). So this is something I will ask for next time and look to see if it is between 20 and 45.
Thank you for all the other advice re medications and I note again that the ropinirole they now want to give me is a bad idea. So I will definitely not got there.
I have no other medical issues.
Really appreciate the time and care you put into your response.
Next time ask for a full iron panel and that will include the TSAT.
Since it is less than 100 you need to bring it up. Take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) 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 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 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. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
Fantastic supplement. Thank you very much. I do have quite a lot of turmeric in my diet, so I will watch out for that. Thank you for all this very detailed info. And a great call on asking for a full iron panel, which I will definitely do. Much appreciated.
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.
"Your serum ferritin had to be above 200ųg ideally." This is fascinating and contrary to what the GP and Consultant have said, which is get it to 100 and then go on ropinirole. So it's really good to know.
That's really interesting to know about the private infusion option. Great idea.
"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." This sounds like a great action plan.
(I take no other meds, so that aspect at least is fortunately not an issue for me.)
Ezzzzie (a lot of z’s there) are you on an SSRI or PPI or calcium channel blocker or statin or Metformin? There drugs will trigger symptoms in people pre-disposed to RLS, among several other drug categories. Sounds like something triggered that RLS two years ago. In the meantime you gotta try taking that oral iron at night on an empty stomach about two hours before bed. It should relieve your RLS in about 1.5 hours for one night so has to be related. You need to take close to 300% of the RDA. Ferrous Bisglycinate works best. Ferrous Sulfate is not near as good for that immediate relief. But if that’s what you have in the house give it a whirl. If you’re on an SSRI it’s unlikely the iron will provide complete relief. Hopefully partial relief. Good luck!!!
To clarify - if Clamire's suggestion works it will stop your RLS for that night only, And then you would want to take it every night. If it doesn't stop your RLS then take the iron every other day.
1) Request a full iron panel from my GP, including transferrin saturation (TSAT), to check ferritin levels. Target ferritin above 200µg and TSAT between 20-45%.
2) Refuse any offer of ropinirole as next step once ferritin above 100µg. Instead, get to 200µg and, if RLS still here, discuss starting pregabalin or gabapentin.
(Also, I'll continue to avoid coffee, even decaf. I started to get RLS when I lost weight and started dinking more black coffee to cope with the hunger. Then I switched to decaff, but the RLS continued. Then I stopped the decaff, and did notice an improvement that has continued.)
Before talking with you guys, I was potentially going to follow the consultant's advice to go on ropinirole after reaching 100µg iron level. The GP was even minded to start me on it at my current reading of 82µg and told me there was no point in taking any more iron because my levels were now within the normal range. So I am so grateful for all your advice here.
Ferritin drop: My ferritin has fallen from 82.2 to 51.9 µg/L since January. My GP told me to stop taking iron supplements in January, but I carried on for a little while and then started up again on getting your advice. So it's strange that it has dropped so much?
My TSAT is 30% and TIBC (calculated from transferrin) is 64 µg/dL—both in the normal range, despite my iron reserves depleting.
Next steps:
I’ve added vitamin C to my iron tablets to boost absorption.
I’ll discuss an iron infusion when I speak to my GP on Monday, aiming to get my ferritin above 200 µg/L based on the advice from this forum.
I’ll also request regular full iron panels moving forward to monitor ferritin, TSAT, and transferrin properly.
Medication: I’m planning to avoid dopamine agonists like ropinirole due to the risk of augmentation. If I need meds later, I’ll discuss pregabalin or gabapentin at night only, as many of you have recommended.
Thanks again for all the fantastic advice—it’s been a huge help. I’ll keep you posted on what my GP says.
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