Standard UK MRI doesn't show what causes RLS. There are some specialised scans that can show iron levels in the brain and studies show that RLS patients have low iron levels in the substantia negra. That's why iron treatment is now first line treatment.There are 'standard' views of what causes RLS. Primary, where there is no known cause, and secondary, where RLS is caused by another condition ( kidney disease, anaemia, pregnancy). I suspect there are many distinct causes of RLS, but as there aren't any large research projects, we're stuck with the 'accepted' view that there's no known cause for primary RLS.
Many RLS patients have 'triggers' like sugar, refined carbs, caffeine or alcohol. Many do not have triggers.
Lots of meds worsen RLS and low serum ferritin makes it worse for many.
It's useful to try excluding one food item you think may be a trigger for a 4 week period. If RLS doesn't improve, discount that trigger. Then repeat.
Dr Thomas advises his patients to eliminate caffeine for 4 weeks. No tea, gree tea, coffee, chocolate etc.
In your case, fill out the IRLSS chart to see what level you are.
Thank you so much for your help and advice .Sounds good idea to leave out certain foods and beverages but it’s 98 caffein free beverages a slip up occasionally with caffein .Last night legs were dreadful and I sometimes think if I’m exceptionally stressed or worried about anything … could this make it worse .?
So lack of sleep causing me to need sleep in the afternoon .
Maybe more iron is needed but thought dark choc would help with that .?
Try keeping a food diary to see what may be triggering your RLS
Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. 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. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
Meanwhile 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.
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.
Even though I have suffered for about 20 years.. I still can’t pinpoint what causes it for me but I’ve made a note of all your helpful suggestions .
I’ll try to get my (fairly new doctors) to do the ferritin test although previous docs have just told me everything is “normal”.
I did have glass of wine yesterday after a funeral but normally never drink alcohol or eat junk/processed foods. I don’t smoke..have de caff drinks mostly .. but do tend not to drink enough water so dehydration could be a big factor…as stress is at present
I don’t take melatonin so I’m not sure about this .?
Have tried weighted blanket for 6 months
..no success..I used to do yoga in winter always too busy working in summer.
Are you still taking amlodipine? It is a calcium channel blocker and makes RLS worse for most people. Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran), Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. And then there are the ace inhibitors such as Zestril (Lisinopril, Qbrelis, Prinivil) and Perindopril (Coversyl). Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Clonidine can actually help RLS. Discuss these with your doctor.
I’m a medic! A bit of research would show that the gene for RLS has been found by the Japanese! It is due to iron transport in the basal layers of the brain!
Why are some people (not Sue) going around in circles??
NICE now have national UK guidance on treatment — and you can ask GP to follow or be referred to neurologist who should know. Codeine is a good start and does not augment!
There are several genes that predisposes one for RLS. If one joins 23 and Me+ one can be checked for them. I have them: They are BTBD9, MEIS1, PTPRD. MAP2K5, IL-IB, IL-17A. Just curious if the gene you mentioned is one of them and if not would love to know what it is and the source so I can add it to my body of knowledge.
It is refreshing to see that one person is following the evidence! I’m on my phone on holiday in Vence, France, so not well placed to look at research papers on a University site. Sorry!
But I just wish others on this site would not do what you are doing; dig out the facts as opposed to express “off the cuff” non scientific comments and explanations! I congratulate you for this!
Some comments are, to say the least, bizarre. This is a genetically programmed issue with iron metabolism in the basal ganglion area.
Some of the opinions on this sight are pop cock. And yet the facts are easy to find. We can pick opinions but not facts.
Sorry I’m not being helpful with the Japanese work but I’m avoiding the mid day sun in France (home, Belfast) sipping water and ice cream and trying to avoid intolerable heat. If I was at home, I probably not be able to spend time but just thought I would through in some reality!
This sounds very interesting and I thank you for your helpful reply .
I didn’t know about the Japanese report so is there a treatment for what Japanese have discovered .?
NICE …. Not sure what this stands for .?
I will ask gp about this but last time I saw gp re restless legs and periodic limb movement I was referred to a neurologist who in a matter of a few minutes 10 the most tested my leg nerves with little pin and said
No Parkinson’s or peripheral nerve damage just take these drugs (all those that give augmentation ) so I was disappointed with that visit .
Docs prescribed one or two suggested drugs prgabalin and another but I didn’t take because I didn’t want to go down that old fashioned drug route and augmentation .
So far I’m frugal with Codein but use other natural herbs that Mucuna puriens which contains gaba I think but must be careful with this even .. then I use magnesium gel/ashwaghanda and just paracetamol sometimes ..
Sometimes nothing works and I despair .
I take levothyroxine 75 mg per day for under active thyroid and Amlodipine ..
NICE stands for National Institute for Health and Care Excellence in the UK. By the way pregabalin is not a dopamine agonist and doesn't lead to augmentation. It is the one to take if you do ever decide to take medicine for your RLS - I remember you don't want to. The IRLSS chart can be found at neuromobil.ch/media/doc/irl...
So you can have normal to high blood iron levels like I do, with ferritin @ 335 ng/ml and still be deficient in brain iron due to the iron transport issue? What has been found if anything to help with this?
I'm not going round in circles. Low brain iron is definitely a major cause of RLS, but it's not the only cause.I can send you research papers showing that spinal scarring also causes RLS.
Kidney disease is another major cause. Kidney transplant resolves the RLS.
NICE cks guidance is outdated as it doesn't take account of the Mayo Clinic Algorithm by the world's top RLS experts. Hopefully that will change when RLS UK is included as a stakeholder, and new guidelines are drawn up.
There are only a handful of UK neurologists who are up to date on RLS. One of the 'top experts' refuses iron infusions because of the risk of anaphylaxis.
We need studies on damage to dopamine receptors (D1) caused by years on dopamine agonists. The US experts believe it stops patients responding to gabapentinoids and also inhibits the uptake of iron in the brain. It may be why so many of us do not benefit from iron infusions.
Studies have shown that genes may be responsible for up to 70% of RLS cases, but I'd be interested in seeing the definitive Japanese study you mention.
Has anyone got a link to the Japanese study. My research is inconclusive. Some blurbs about one study of limited scope and another based on limited anecdotal evidence. Just curious.
Give up the cakes, porrige and limit fruit consumption to a cup fulll of berries per day. The starch im the oats and cakes are easily broken down into sugar and the berries will be lower in sugar than most fruit which have been bred for swetmess they are also high in antioxidants. Also avoid refined seed oils which cause oxidative stress leading to inflammation which is the primary cause of RLS
I was about to recommend the poster looked at your posts Eryl :-). Remind me what the main thing is that you talk about cutting out?...it escapes me (I don't suffer too terribly myself).
You needn't give up fruit completely just stick to berries. The reason that some of us can't toletate sugar is genetic like some keep the fat on the inside (tofi) and some put it on the outside.
Doctors have known about RLS going back to the 1600s perhaps a lot earlier.
Yet it is not fully understood. Dopamine imbalance and iron deficiency in the brain are highly suspected.
But I will say this … I have refractory RLS since I was about 8. I also have PLMD and probably ADHD although I’ve learned to cope with the latter. Yet my iron is very high coming in at 300. So, the link between iron and RLS is not always a reliable indicator.
Finally, a DNA test I took with 23andMe suggested I’m a light sleeper.
One thing I have noticed is electrolytes. I'm not a major sufferer myself (I'm mainly on here about my mum) but have always had the condition mildly...feet and toes mainly actually. Just there, in the background, does arise occasionally but generally not a nuisance. However, something happened that showed me a real trigger (for me at least): I had a terrible sickness and diarheoa bug and ended up being quite dehydrated, despite drinking water. I know when I'm dehydrated - I get a particular type of headache and twitchy muscles. I live in Turkey so am used to how this feels. The night after the worst of the bug, my legs went crazy. I've never known them like it - I couldn't stay still for a second (I completely sympathise with all the members on here who suffer).
The next night I had made sure I'd had electrolytes to drink (like a rehydration sachet) and was back to normal. You can buy them as a powder you drink daily. Apparently many people can be deficient in them.
I just made a hair tissue mineral analysis (HTMA) and turned out I’m deficient most of the electrolytes, especially Potassium and Sodium as well as most of the trace minerals, even though I eat quite healthy, including a variety of veggies and fruits. As I learned about mineral balancing, the ratios of some minerals are also as important as the amount, for example Sodium to Potassium ratio in the tissues should be around 2.5. In my case most of the important ratios are also out of the acceptable range. I’ll definitely try electrolyte powders to increase my levels and will see if it helps. The outcome of my HTMA test confirmed my extreme fatigue and poor digestion, including low stomach acid which I have had aware of. Also suspects thyroid and adrenal glands issues, which I’ll check soon from bloodwork.
Trace Elements Inc, but I ordered it from a practitioner. As far as I know you can’t order HTMA directly from Trace Elements. As I understand there are two main benefits of HTMA, comparing to bloodwork: firstly you get the last 2-3 months of your mineral status, which could be more useful to assess your average mineral status, secondly in case of HTMA you get the mineral status of your tissues and cells, which could be completely different than the mineral levels in your blood. Also HTMA can show toxic elements in the samples , like Lead, Mercury, Arsenic etc.
You can check a sample of the Trace Elements sample result on this link:
Unfortunately I’m from Hungary. In my country it’s not possible to request HTMA test from a GP. BTW I highly recommend to order it from a practitioner who has good experience in HTMA, as it’s not so easy to fix the mineral imbalances that may shown on the test. I just read that there are many interactions between minerals and sometimes it’s not as easy as taking supplements of the ones having low status, because of the antagonistic or synergistic effects of the different minerals. For example in case of iron which seems the most important for us, Copper has synergistic effect, thus can increase Iron in our cells, while Calcium or Zinc have antagonistic effect. In my HTMA report, both Iron and Copper was low.
The most interesting that even my Fe, K, Na are always in the middle of the normal range in my blood (and my ferritin level is usually above 150), in my hair tissues all of these are in the low range. This means (if the HTMA is accurate) that these important minerals are not able to absorb from my blood into my cells for some reason. In my case even intravenous iron did not help at all to relieve my RLS symptoms.
I’ll definitely put that on my list rehydration sachets as I don’t really drink enough anyway and it’s been so hot here lately in uk maybe my latest bout is due to this plus family stress .?
No problem ! A friend of mine has recommended a tub of powder that you might want to try if you have any joy - bigger quantity and cheaper. She reckons she researched the subject and came up with this product (please see pic above)
Raspberry and pomegranate is the nicest flavour, she says. Just put in a water bottle with water and shake. You then just sip your water as normal.
Would love to hear if any of the suggestions help at all!
if you don’t eat a lot of meat you might be deficient in iron. As others have said there isn’t a 100% consistent relationship between blood iron levels and RLS but it’s a common cause nonetheless and if you are understandably avoiding medications then iron supplementation is probably the most “natural” therapy there is. Might be worth having a blood test so you know what your ferritin levels are which may inform the decision as to whether you take supplements and if you do will give you a baseline so you can check improvement.
I think I really need to get blood and mineral levels test done .. my new gp surgery might be more helpful than the last one where I was stuck for years and just being fobbed off ..
sorry to jump in - if you get a resistant GP and can afford it, I’d say go to a well recommended nutritionist or functional doctor instead. Good luck !
my husband suffered badly from RLS augmented by pramipexole until we found Healthunlocked. After much reading, advice and experimenting we discovered that his triggers are mainly "lots of fruit and vegetables" - he is now on a low oxalate diet (google will guide you) and has been much better, although he is also on low opiod medication.
Find a good dietician, preferably with experience with FODMAP diets. I have been on a strict diet for the last few years and I accidently found that the FODMAP diet helped so I used it as a basis for decideing what to eat.
I now avoid caffeine, gluten, lactose, alcohol. I drink pure water, usually warm to hot. I think I can eat a few squares of dark chocolate but milk chocolate is not good for me, probably high lactose but I don't know. I can send details if your interested but it probably best to get help from a good dietician.
They will probably start you on an elimination diet and then if there is improvement in your condition start reintroducing various foods in some methodical order. I was on the elimination diet for about 12 weeks from memory.
Dont be confused between an anti-RLS diet and a healthy diet Veges may be good for some people but if I eat a little onion or garlic then I suffer.
You may be lucky and find that there is only a couple of foods that upset you. For example I always had lots of milk but my RLS was reduced a week after I avoided milk completely.
Its easy, cheap and works without the usual drug side-effects. side effects
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