Hi, I'm new to the forum. I've been suffering with recurring RLS for a few years without ever knowing what it was until now, thanks to some Google research.
When I first went to my doctor for this feeling, they didn't have a clue what it could be, and ordered a number of blood tests that only showed up with iron deficiency anemia, which I've been struggling to keep under control for the last few years. I now know the two may be linked.
I have full body RLS which is relentless - morning, afternoon, evening, it's terrible 24/7 with no let up. It lasts a few weeks before it disappears for a while. This current bout has been going for about a week.
I can't sleep, and can't sit still at work, so haven't been in for the last 2 days so I'm at my wits end.
Any help or advice at all would be appreciated.
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Aria3
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Welcome. As you have discovered anaemia is linked to RLS and if you get your serum ferritin up to over 100 you should see a marked improvement in the RLS.
Are you in the UK? If so, ask for an urgent referral to a haematologist at a big hospital and you will hopefully be given an iron infusion. Most RLS neurologists won't consider this (King's London have told me that)
Annejende ( in the US) had 3 iron infusions and her RLS disappeared. She had anaemia due to malabsorption after a gastric band operation. Is there any possibility you are not absorbing nutrients properly? An ulcer or other gastric problems?
I know that several hospitals in the UK have done this for RLS sufferers and with great success.
In the meantime, you could try Iron Bisglycinate ( gentle Iron) at night on an empty stomach and I read on this site that it is best to take every other night. Apparently if you take it every day, the brain receptors puts up a defence mechanism to stop intake. Not sure of the exact science behind it, but it seems iron stores go up quicker if taken every other day.
I'm reluctant to suggest medication though ( they all have some side effects) as I'm convinced you are someone who will completely get rid of the RLS once your iron increases- hence the suggestion to see a haematologist for the iron infusions.
Yes. But when you get results ask for the actual number. Most people are told result is normal or NAD( nothing abnormal detected) but for people with RLS serum ferritin needs to be above 75, preferably above 100. For general population a figure above 15 is regarded as normal by GPs.
Hi Joolsg, thank you, this is very helpful. Yes, I am in the UK. My doctor has prescribed ferrous fumerate 210mg 3 times a day for when my iron is very low like now, although it usually takes a long time before it starts to help. I've had times when my iron levels have continued to drop for a while after taking.
It has always been annoying that when my iron is low and I'm getting so many symptoms from it (fainting too) I have to wait for the tablets to start working.
I am dying for a quicker fix right now so will definitely suggest this to my doctor so my iron levels increase in the short term, and we can pick up the long term after that.
I will check with my doctor about alternating my dose also, as it does seem to be the case that my intake stops. I've had tests and have no malabsorption issues, I just suffer from extremely heavy periods so lose blood and iron quicker than my body can replace.
As it comes and goes, I suspect it's probably diet related. Either you've become deficient in some minerals or that you've become sensitive to some component of your diet. I've found relief by keeping my sugar intake to a minimum. Some say that magnesium helps them, but I've never found it to help me. I take it for a cardiac problem, but that's all it seems to affect for me.
Thanks for your reply Eryl, I've drastically cut back on my sugar intake since last night as I definitely have too many sugary snacks (fruit bars, fruit, juices), along with increasing my fluids. My symptoms are definitely a lot less intense today then they were over the last week so thank you. I've managed to make it into the office today and have been able to sit still without spending most of the day in the toilets shaking around.
I'm in UK as well. My Ferritin levels were closed and after two infusions I had some relief. I have full body movements so I know how awful you must feel. Most people acknowledge the link between Magnesium and RLS. I take a magnesium capsule every night but I also make my own Magnesium oil and at the first sign of an attack I massage my legs with it. It works most of the time for me. I can give you the recipe if you like but good luck with whatever you do. Keep in touch.😀
Hi, I've been using this for a few years now and it works for me. It's worth a try and very economical compared to the ready made oils.
It's half a cup of Magnesium Chloride flakes (some recipes say Epsom Salts are a good substitute but they really don't work for me) and half a cup of distilled water. I boil the water and let it go cold, or use cheap bottled water.
The reason for distilled water is it has a longer shelf life, so I'm told. Just boil the water in a pan, add the flakes and turn down the heat. Stir with a wooden spoon until dissolved. Cool and then put it into a dark coloured glass spray bottle.
I bought an Amber one from Amazon and it's still going strong. You can leave it there but I add 3 or 4 drops of sweet Marjoram to the oil when it's cooled. It smells nice but it also has anti spasmodic properties so I gave it a try.
Just spray the oil into your legs and massage into the skin.
I did wonder if it was just the massaging that helped so I tried without the oil but it didn't have the same effect.
Ferrous bis glycinate chelate essentially evaporated my severe RLS Symptoms (no sleep, in my arms also) in just a few days! I discovered it by trying a home remedy - Blackstrap Molasses - which contains a small amount of iron. Anyway, this iron supplement crosses the blood brain barrier more readily and is non-constipating (a problem with other iron supplements).
I have had very severe RLS symptoms in the past though not as bad as yours. You have my sympathy.
This is a mongrel of a disease! Almost everything anyone tells you has to be prefaced by "this works for some people"
There are quite a few things you can try before you let the doctor guide you into the clasping hands of big pharma. The drugs they offer often give great relief but also often come with side effects and the risk of addiction . I initially welcomed the drugs but found the side effects after a few weeks became unbearable. If you read this forum you will find some people have had 100% relief for 20 years from drugs while others are going through nightmares trying to get off them./
Magnesium works for some people. It made my RLS worse a year or so ago when I first tried it. Now my RLS symptoms are almost gone. I started waking several times per night with really painful cramps. About a week ago I gave up and decided that perhaps I should alternate between cramps and RLS so I took a Mg tablet. No cramp and no RLS I was pretty thrilled with that. Two nights ago I was too tired to go downstairs to get my Mg tablet and I woke up with a cramp several times. The magnesium I take once a day at night is a combination of Mg Oxide - Heavy 500milligrams, Mg Phosphate 80mg. Mg amino acid chelate 10mg and Mg Citrate 10mg. (from the label) They say this corresponds to 361.25 grams of elemental magnesium. They also contain Vitamin B3 and vitamin D6 which they claim impoves the absorption and retention of mg in the body. I have no idea if such a complex combination is worth it or not but it seems to fix my cramp without making my RLS worse. To digress slightly my wife has had bad cramps since our baby was born (baby is now 30 years old) She has been taking magnesium diglycinate for about three months Three tablets a day but she is holidaying at the moment so I dont know the dose. In that time she has had one week with several cramps and the last 8 weeks with only one night of cramps and that was the day she went out without her medicines. Sounds too good to be true.
I have an opinion not shared by many that there MIGHT be a benefit in raising your ferritin level to the recommended maximum of 250 and I am trying that on myself at the moment. If 250 is safe then you risk nothing by trying to get there. I was taking a huge dose of an "ordinary" iron supplement (cant remember which) and I felt a slight benefit but I was getting well into kidney or liver damaging area. I am now taking two 45mg iron biglyncinate tablets each night and I am getting a blood test on Monday. I think biglycinate is also called iron diglycinate in some places.
I have found that going to bed with too many blankets on so I am just a bit warmer than I would prefer has helped a bit. I also wear a track suit pants and sheep skin slippers in bed
Many people have reported that wearing compression stockings has helped them. I haven't tried it.
What has made me almost symptom free has been diet control. I am on a fairly restrictive diet called a FODMAP diet combined with a bit of a low chemical diet. The FODMAP diet was developed by Monash University for Irritable Bowel Syndrome ( IBS) patients. There is something in common between IBS and RLS as indicated by many IBS patients having RLS.
I started dieting with a gluten free diet and that helped then I heard that if gluten free helped than perhaps FODMAP could be related to the problem so I went on the FODMAP exclusion diet. This means you eat a very restricted range of foods until your symptoms have gone and then re-introduce groups of foods one at the time until you work out which groups you are intolerant of. Then there is another diet called the Low Chemical diet which was invented by the Royal {Prince Alfred Hospital (RPAH) in Sydney Australia. This works the same way as the FODMAP diet but groups foods differently according to chemicals they contain. Again you determine what chemicals affect you adversely. You can read all about these two diets on the You need the help and encouragement of a dietician to apply these diets. You need your doctor to monitor your body to make sure the diet is not hurting you.
Some people go on the FODMAP diet and their RLS symptoms go away the next day Others need a month. I was on the diet for 12 weeks and I say it was 80% gone so I added the low chem diet, or bits of it, and have reached about 100% I sometimes stuff up accidentally and sometimes I just say damn it I am going to enjoy anything I want. I am now confident that if I depart from the diet I will only lose about three nights sleep and the diet will work again and all will be well.
I strongly suggest you go on a quick FODMAP diet today and see if it helps but see your doctor as soon as possible. Your doctor will probably say that he knows of no relationship between RLS and diet. Ask him to humour you and just make sure you are not killing yourself. If he refuses find another doctor. Remember doctors are biased toward pharmaceuticals because these are the approved treatments. From what I have read here neurologists are not much better except they part you from your money quicker.
Remember neither of these diets are healthy!!! The FODMAP diet bans all sorts of things that ordinary people think of as healthy. Apples pears. stone fruit, broccoli and many etcs.
The low chem diet suggests zero caffeine and try to cut out tea. My dietician says that tea is a complex mixture and coffee is simpler and less likely to cause a problem. Remember if a jam has 50% real fruit but dont say what it is then its probably apple and/or pears. They are apparently cheaper than strawberries or other jam components. Try to keep off lactose in milk, butter ice cream chocolate and where ever else you can imagine it. I am not sure about soy milk Bananas you can eat but no more than two per day. Meat = beef chicken fish pork are all OK. Rice cakes are OK. I can eat a few rice cakes with peanut butter. eggs are OK I have been eating a few slices of FODMAP bread per day. Initially I had a problem that if I bought something special like FODMAP friendly bread I would think it was wonderful and make a pig of myself so I had to suffer later Anyway just read up and do your best until you can get some professional help. After a while you find the cardboard packets taste as good as the contents and then its easy.
I have found it hard to search this forum to read old posts so I have repeated a lot here and probably forgotten a lot. I will now copy this and other posts I find interesting into a word document to save typing. I would appreciate any advice on navigating this site. There is probably a topic on that subject if only I could find it. I freely admit that computers are not quite intuitive for me.
Hi apparently 🤔 iron deficiency detection is dodgy and could in fact be magnisium deficiency also apparently with a deficiency of manisium the absorption of vitamins is affected !
I'm almost starting to sound like an expert on it , but I'm not ..
There are far more knowledgeable people on this forum who I'm sure could tell us more about the magnisium link to rls i hope this helps you .
I have been prescribed clonazepam but I am wary of the side effects. Do you know anything about this? My last interview with a neurologist didn`t go well - he wasn`t very aympathetic. It would be helpful if it was possible to find a specialist who actually experiences this.
Hi. I’ve been on Clonazepam .5 3x a day as needed for panic attacks, for 20+ years. I use it usually at bedtime in combination with 600mg Gabapentin (taken 3hrs before) and find it very helpful for my RLS. Hope this helps 😊
RLS Like a reflex test ..ie tap croswise below kneecap as done by doctor only it doesn't stop. As i said before what works for one may not work for others. For me ,keep away from sweets at night (all sweets), do leg stretches ie toe down and force knee towards floor, drink 1 to 2 bottles of indian tonic water {by Schweppes}...contains quinine.
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