I only found this really useful forum recently and am hoping you can give me some advice on behalf of my mum, who has very severe RLS.
My mum has had RLS for many decades. It's got steadily worse over time but in the last couple of years this has accelerated and it's become far more intense. It now effects her 24 hours a day: she is always moving and gets next to no sleep, which is having a significant impact on her health and life. Other accounts we've read of worsening symptoms have been due to augmentation, but this isn't the case for her as she's never been on any medication for RLS (and no medication of any sort for many years). I was wondering if anyone else has experienced a significant worsening over time not due to augmentation, and what causes this? She did develop a foot injury (ironically sustained whilst moving about due to RLS!) which we feel may be linked to this decline.
Also, she had her ferritin level checked recently (but unfortunately not transferrin saturation) and it was 97. I've seen other posts on here recommending iron tablets but would like to know if it would be worth her trying these given her ferritin level isn't very low? I know iron infusions are also an option but I don't think this would be a possibility for my mum given her personal circumstances.
Thank you very much in advance for any advice you may have and best wishes to all.
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PeachTerrier
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RLS can get worse with age. A foot injury can cause inflammation which can make RLS worse. And if she had her ferritin test after this, then it can make her ferritin higher than it really is. The same is true if she didn't fast after midnight, didn't have her test in the morning and didn't stop taking any iron including in a multivitamin 48 hours before the test. Assuming none of these is true, then although she is close to the 100 that one wants to have it, some people need it to be 200 or even 300, so she could certainly take some iron. She can 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. She should 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 live in the US ferrous sulfate is cheaper and for most people it does not cause constipation but iron bisglycinate is much less likely to. If she takes magnesium or calcium she should take it at least 2 hours apart since it interferes with the absorption of iron. She shouldn't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if she takes her iron at night. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. It takes several months for the iron tablets to slowly raise ones ferritin. She should ask for a new blood test after 3 months.
Actually since she has symptoms all day long, she might instead want to ask for Horizant which acts 24 hours a day. It is expensive but if she lives in the US Horizant has a prescription savings card which makes it inexpensive which you might want to check out at horizant.com/savings
Hi Sue, thank you so much for your very detailed and helpful replies. I will pass them on to my mum and she will probably give iron supplementation a go for a while before considering the other options you have mentioned. We are in the UK and her GP has only ever suggested ropinirole as a treatment (which she is keen to avoid) so she will read the Mayo Algorithm and mention its recommendations when she next sees the doctor.
Hi SueJohnson you mentioned ferrous sulfate and iron bisglycinate above but I was wondering if ferrous fumarate is just as good to try? My mum has bought some 14mg ferrous fumarate tablets but not sure if this would the correct dose to try. Thank you
The important part is the amount of elemental iron it contains. I have a note that 210 mg has 65 to 70 mg of elemental iron which would be the correct amount. This amount is obtained by prescription. So 14 mg even if that were the amount of elemental iron would not be enough.
You say she has never taken any medicine for her RLS. Gabapentin or pregabalin (Lyrica) and now the first line treatment for RLS. I would suggest she ask her doctor about them as for many they can completely control their symptoms.The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks to be fully effective. After that she should increase it by 100 mg (25 mg pregabalin) every couple of days until she finds the dose that works for her. She should take it 1 to 2 hours before bedtime. If she needs more than 600 mg, she should take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If she needs more than 1200 mg, she should take the extra 6 hours before bedtime. (She doesn't need to divide the doses on pregabalin) Most of the side effects of gabapentin or pregabalin 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) daily." If she takes magnesium she shouldn't take it within 3 hours of taking gabapentin or pregabalin as it will interfere with the absorption of them and she shouldn't take calcium within 2 hours. Have her check out the Mayo Clinic Updated Algorithm on RLS which will tell her everything she wants to know including about its treatment and refer her doctor to 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, foods that cause inflammation, ice cream, estrogen, 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, 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, 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, using a standing desk, listening to music, meditation and yoga.
Yes I did get significantly worse symptoms after injuring my hip and developing oesteoarthritis. Before that used to get by on 4 hrs of quality sleep from about 3am and had lots of energy. I had never taken any medication for all those years. Only now with only 1 or 2 hrs of sleep do I feel the need for medication. For now I've settled on cannabis for a few weeks and then a few weeks of codeine, just trying this for a while. Unfortunately Pregabalin didn't work at all and give me nasty side effects. I hope your mother will soon find something that works for her. All the best.
Thank you very much for your reply. I know from my mum’s experience how torturous lack of sleep is, so I feel for you and really hope that what you are trying just now leads to improvement. I would be interested to know what side effects you experienced with pregabalin if you wouldn’t mind sharing? Best wishes.
Good on you for reaching out this forum on behalf of your Mum my daughter did the same for me. I was I. Hospital had I was most certainly ready to ending my life.
I would recommend this as well as the advice on iron and. The UK you can still buy low dose codiene over the counter , I was visiting for Australia 2 weeks ago and I bought some.
When I lived in the UK and later years panadiene 9 mg codiene and panadiene extra 12 mg were what used PRN and they worked perfectly until 2019 and it was banned in Australia. I did notice in my 40 s the condition most definitely worsened. And was out of control in my 50 s
Sorry probably have missed your mums age ?
If the low dose codeine does not work, I would recommend you take her to professor Walker as you have a better chance , being a prescribed an opioid .
Also fake sugar and sugar have a massive impact on my RLS at night , of course I don’t drink.
I am blessed to be on buprenorphine 2 mg Which gives me 24 hr relief , however in the UK from the knowledge I have your only chance of getting to this medication would be to see Professor Walker. It’s a life saver but currently very hard to obtain which is ridiculous considering it’s safety .
A few of us are really working hard to change this situation.
Originally to get mine by travelling to NYC to see a gorgeous companionate Dr Glen Brooks who really cracked the code with this drug.
Thank you very much for your message. I’m really sorry RLS has caused you so much suffering, but it’s great to hear you now have 24 hour relief. My mum is in her sixties and is very much hoping her RLS doesn’t worsen any more as it already has a severe impact. I’ve seen Professor Walker’s name pop up a few times on this site so will look into this further. Best wishes.
I have been in the process of trying to control RLS since the first of the year. Augmentation was a factor so the good doctors at the Mayo Clinic with a short round of tramadol and a good deal of gabapentin got me off Requip in about 2 months then I still had some lingering symptoms so this is my protocol now: 100mg gabapentin 2 hours before bed; stay away from glutamine as much as possible and if I am eating out, berberine suppresses the glutamine. I take iron both in my multi and a plant sourced 25mg iron in the evening. And now for the strange item that works about 99% of the time: knitting or drawing. .something physical...just listening or watching is too passive. Have to DO something...usually for no more than a half hour...usually less. I have my life back! Some veggies have glutamine too so watch out...but it stimulates the nervous system...not what we need. I have suffered with this all my life...I'm 72. Really hope this helps. I feel so very sorry for all you out there...I KNOW how you feel.
Thank you very much for your message. I’m sorry to hear you’ve suffered from RLS for so long and really hope you have good results with the things you're trying. I hadn’t heard about low glutamine diets so will do some research into this. Best wishes.
Just having posted about the benefits of knitting, in an effort for full disclosure I also listen to the most Holy Rosary sung in Latin as a gregorian chant. I find any other music is too stimulating..this is very calming . It's easy to find on YouTube.
Since restless legs syndrome is all encompassing all possessing.. knitting, reading, sleeping, watching tv, is out of the question, no such thing as concentrating when the legs hurt ,,, its not just, ants ,wiggles, or creepy legs, it hurts and they jump on their own only relief is standing up moving. i spend time on my PC which helps. sometimes i fall asleep at the keyboard but thats very dangerous.. because ive withdrawn from lyrica and now pramipexole my doc says take two paracetamol but believe me even they make my legs jump. can any body answer why does it happen every night all nite and into the day some days ...
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