I was hoping you could give me some advice about where to begin, as I'm finding reading through the posts, although very helpful, also overwhelming!
I have self diagnosed as having RLS for about 20 years. It has been relatively ignorable until the last few years. Now it is affecting my sleep a lot, as well as my husband's. It used to be a bit of kicking but now it is waking me up as it's painful and I cannot get back to sleep without a lot of effort, using ice packs, massaging, stretching.
I have booked a GP appointment but it's a telephone appointment in 2 week's time. I'm sitting awake in the middle of the night with bad legs so thought I'd do some research and came across this website.
For context - I am 35, have an active job which I started at the beginning of September, have just come off a mild dose of anti-depressants (10mg Citalopram) at the end of September after about a year's use. I do yoga once a week, and eat relatively healthily - not much sugar, cooked from scratch meals, vegetarian. I take Vitamins D and B complex everyday. I have one decaf coffee in the morning and sometimes some chocolate. I don't smoke.
I've tried massaging a magnesium oil on my legs before bed but don't think it helped. I slathered my legs with Deep Heat before bed which worked for a little while then suddenly it didn't, like it's built up some tolerance or something! I take a hot bath before bed which helps me relax & unwind - I actually go to sleep relatively easily now that my anxiety is under control. But I am being woken up by painful legs several times a night which I'm fed up with. I'm aware that my symptoms are probably very mild compared to some of you from what I've read!
I'd prefer lifestyle/natural remedies where possible. Obviously once those have been exhausted I would definitely go down the medication route.
My questions are-
1) Where do I begin in terms of trying to find a solution?
2) Anything in particular I should mention/ask about when I eventually have the GP appointment?
Many thanks in advance!
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Awakeat3am
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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 and yoga.
When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. 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 like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. I know you don't want to go the medication route, but it is likely you will need to. If the suggestions I gave you above don't work and you will know in the 2 weeks before your appointment, 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. 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 of gabapentin and 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 you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. 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 to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...
Thanks for your response. I will definitely ask for a full iron panel from the GP. After posting my original post I did some more reading and it seems that coming off the anti-depressants might have something to do with why it's got suddenly worse, although it seems more common for RLS to get worse during taking the SSRIs rather than coming off it, which is the stage I am at the moment.
Sue knows loads about RLS as does Jools & they are a fantastic source of advice.
The only thing I would say differently is to do with likely needing to start treatment if the self help remedies don’t work. You are only 35 and have a long life ahead of you. Dopamine agonists are potentially awful as the others say, but I found ( and others too ) that the effect of Pregabalin wore off. I took it for another condition & found by chance its miracle effect on my RLS before it was a recognised treatment.
There are all the complicated things of trying to weigh up how on earth to exist with RLS, manage to work and care for a family if these are relevant to you, but I would avoid any treatment for as long as possible. Something better may come along in the future too. If I knew then what I know now & that RLS gets worse with age I would keep treatment for when it is even worse if you can.
My hope would be that you are low in iron and fixing that will fix you. You are a young woman & it is common to become short of iron at this age for a variety of reasons.
Hi there , and welcome , I am a newbie myself and have found Sue and joolsg to be fantastic with so much information , I too have not long stopped taking Sertraline and also Amitripyline, both are triggers , I did what the girls said , had ferritin checked and doctor said it was all fine , ferritin was 56! So now taking Ferrous sulphate , two in the evening with orange juice , also magnesium citrate during the day and I have found such a difference in a few weeks! I wouldn’t have know any of this stuff f it hadn’t been for the wonderful people here , you have made a start , I really hope you find something that works for you , and you can feel normality soon!
Hi Pam, very thrilled for you. Do you feel like conducting an experiment that will help people on here and very possibly contribute to world peace? Skip the iron for one night and see if you’re still good to go to sleep with little or no RLS as usual. The GREAT thing about this experiment is that if you go to bed and do have RLS and can’t fall asleep then you can get out of bed, take the iron right then and there, and the RLS should be gone in an hour. And then you will know to never be without iron should you go on vacation or sleep out.
Thank you , I wish it was that easy , but iron takes a good few months to build up but maybe everyone has a cut off point when it helps , who knows , but stopping and starting iron isn’t a good idea , I will continue then get more bloods done and see what it’s at and then reduce the dose.
Sue has given you great advice. You mention you have had mild RLS for years but have noticed it more over the last few years. You were on Citalopram but have stopped. That's a good step for RLS because Citalopram and most anti depressants trigger or worsen RLS.Before you start any RLS meds, it's advisable to eliminate or replace existing meds that worsen RLS.
Sedating anti histamines, anti depressants, cough and cold remedies, beta blockers, statins and PPI meds can all trigger RLS for the majority of patients.
Raising serum.iron above 60 and serum ferritin above 100, preferably 200 can improve the vast majority of RLS and many people can then be med free. Ensure you get a full panel fasting blood test from GP before meds are prescribed.
In the UK, doctors aren't taught anything about RLS and the NHS and NICE CKS guidelines are outdated. The best, most up to date information and treatment is in the Mayo algorithm.
UK GPs just look up the disease and their med book tells them that dopamine agonists are the treatment. This is out of date so DO NOT let your GP prescribe Ropinirole, Pramipexole, levodopa or the rotigitone patch!.
Eliminating trigger meds and raising ferritin should be done BEFORE any RLS meds are prescribed.
Print off the Mayo algorithm and the GP training link below and show to your GP. Sadly, we have to do our own in depth research in this disease to obtain the best treatment.
If raising ferritin doesn't help, or the RLS is causing sleepless nights, the GP could then prescribe pregabalin or gabapentin. Many people are managing to get iron infusions for RLS now in the UK. They are safe and raise ferritin levels much faster than oral pills.
Hi Joolsg, You mentioned what you are taking for RLS and I wrote it down and lost the paper I wrote it on. Can you please let me know what you are taking that is working. I am pretty desperate. I'm not sleeping. RLS starts when it gets dark until dawn. Have to keep walking most of the night.
Hi JosanaI take 0.2mg Buprenorphine at 10 pm and 0.2mg at midnight.
You will need to ensure your serum ferritin is above recommended levels & that you're not taking meds that trigger or worsen RLS. I see Sue has responded to another post you made where you listed all your medications. Don't stop any without first discussing fully with your medical team as you need to discuss suitable replacements & how to taper off slowly etc.
Often gabapentin and pregabalin don't work for those who have suffered augmentation on dopaminergic drugs and our RLS then falls into the 'Refractory RLS' category (Mayo algorithm) and low dose opioids often really help.
I took Oxycontin 3 times a day and 150mg pregabalin at night but still had severe, refractory RLS. Like you I had beennon dopamine agonists for years and gone through augmentation and withdrawal.Oxycontin just didn't help. It seemed to cause mini withdrawals.
However, Buprenorphine worked from the first night.
You may find that methadone or Buprenorphine help as long as they don't affect all the other meds you are taking.
Shumbah was able to stop her blood pressure meds after Buprenorphine worked so well for her. Good sleep reduced her BP.
Sue and Julie have covered pretty much everything above. I'd just emphasise Julie's point: do not allow your GP to put you on ANY meds for RLS until (1) you've had the results from a full iron panel taken as Sue and Julie specify, and don't allow your GP to just say your results are 'normal' without giving you the numbers. What is normal for most of the population is inadequate for RLS sufferers; (2) if your iron numbers really are up where Sue and Julie say that they should be (i) list here any prescription and/or non-prescription meds you are taking which you haven't already mentioned so that S&J can advise on possible triggers; (ii) while your food & drink intake sounds good, IF you are using any diet food/drinks to avoid sugar their sweeteners could be triggering your RLS; (iii) trial supplementing with 400-600mg/day of Magnesium Citrate: that had an immediate effect for me (but can cause diarrhoea in some, so careful!). (MgCit is the easiest form of absorbable oral Mg to find in the UK - although can be easier to find in e.g. Holland & Barrett rather than Boots).
There are so many triggers for RLS it's best to try to identify them before resorting to meds. While they *may* be necessary - Gabapentin & Pregabalin are much better than the Dopamine Agonists that UK GPs still tend to prescribe - in my view it's still best to avoid if possible. I've been lucky enough to be able to *largely* control my longstanding RLS without resorting to meds. Good luck!
Thank you Chris. I take a lot of meds for high blood pressure and other ailments. Currently taking noThing for RLS. I will definitely watch out for triggers. One I know of is sugar. Bad stuff.
So many meds trigger RLS: for example Sue Johnson writes in a much longer list "some but not all beta blockers, some but not all anti-hypertensives, some but not all blood thinners". If you list your meds, Sue or Joolsg could give you detailed advice. SueJohnson Joolsg
If you have exhausted natural "remedies" w/o relief and want to avoid taking meds, try kratom. You don't need a prescription, can get it online. It is a tea and works in about 15 minutes or less for me. It's GREAT!! Good luck!!
krantom works wonders for me too . My consultant and GP have tried to put my on ropinerole but I won’t touch it. Will make things 1000 worse. I totally understand how your feeling though. I went away on holiday a few weeks back and I could have cut my legs off. It ruined it. So then I stopped having any food in the evening and it worked to stop it. I think going away and having a family meal made it worse . I’d rather starve than have the RLS . It’s torture and such a shame that we have to resort to our own methods and research, when we know what medication would help us. I’m afraid opioid is the only thing that helps me and Doctors are very unwilling to prescribe these with the fear of us becoming addicts . But I just want something to stop the legs . It can make you feel suicidal xxx
I have been taking opioids since I was in my 30's for chronic pain. I have not had to increase. I took hydrocodone for 38 years and now I have to have surgery on my back so I was switched to Oxy 10mg 4x day. My doctor saidthat if you are taking opioids for a medical problem, in lieu of getting high, it is not a problem. I am living proof. So not to worry ladies.
Oh, my goodness! How strange! I didn't get mine through Amazon. This is the website I ordered from: kratomusa.com. You will see many different kinds listed, but the one that was most effective on my RLS was the one called N P Kratom Powder. I hope this helps!
it may be helpful to google biochemist katherine reid low glutamate diet to check if yoyr balance is ok before meds if glutamate sensetive taurine , melatonin, natures own "complete sleep advanced" has herbs that knock down glutamine which over excites the cells in some people and it has a herb that has to do with iron otherwwise food charts etc good luck in. your journey
Hi RLS 3 am. I’m so sorry you are having a bad time of it but your not alone out there and I’m pleased that you found this forum as you have already found lots of advice. I agree that it can be confusing as we all have differing stories and views on what works for us as individuals so don’t feel overwhelmed, Sue and Joolsg are by far the best and most experienced advisor on the forum. I am a member of RLS-UK a small charity that lobbies for a better understanding of the condition and is endeavouring to promote training for the medical profession, we are currently about 10 years behind America in this I’ve suffered for 40 years and at 76 fed up with it, but Sue and Joolsg have given great advise. Like you I’m awake a lot at night wandering around the house. I was prescribed Ropinirole years ago which is a dopamine antagonist and finally ended up having to take 6mg/day but it now makes the condition worse so have been advised to come off it but slowly by 0.25mg/day every 2 weeks so it’s going to take just under a year as by all accounts it’s harder to withdraw from than either heroin or crack cocaine so is to be avoided if your GP tries to prescribe it.
Best wishes and I hope it goes well with your telephone consultation.
I am on a similar journey to you but a bit further down the road. I have been prescribed iron tablets as my ferritin levels were 52. I have been taking the supplements for about 2 weeks now and I’m getting up 2-5 times in the night rather than the 5-9 times previously.
Prior to this I saw a kiniesiologist who prescribed supplements that worked well for my body and this worked well for a time. As you say, the benefits then wear off so you need to keep reviewing & updating.
I am so sorry to hear all this. I started RLS when I was pregnant in my 30s.As everyone says Sue gives lots of good advice.
40 years ago only St George's Hospital recognised RLS (I inherited from my father) but were sure it was a circulation problem.
I agree that too much advice is overwhelming but 40 years on I would agree with butterfly sun that RLS is not at present curable so I would try to stay off strong drugs for as long as possible and go down the "alternative" route. Try magnesium citrate. Try massage. Try different diets. Some things help some people.
_ trying not to be arrogant, and having lots of compassion: My successful solution for may 45 years RLS + UARS (I would recommednd check your breathing with a PSG); doing rather well, since some four years ago (still learning on applyind energy techiniques properly);
_ just one coffe in the morning, no alchool;
_ rigorous sleep hygiene, including sleeping in two stages (some 1 to 2 hours woke up around 3 to 5;00 pm, Applying exercises for some 30 minutes , and reading until go back to sleep) ;
_ but mainly: EFT + some Dona Eden's exercise on body energy + 0.5mg of Clonazepam (can go without it from time to time); for me these work very nice to go back to sleep. See more on my replies, just in case;
all the best and good luck
I've suffered with RLS my entire adult life. At 73, the only thing I can really count on to relieve my nocturnal symptoms is simply Hyland's Restful Legs. I start with 2 tablets, sometime increasing it to 4 and the problem melts away within 1/2 hr. In the U.S., its available at our local drug stores or online. Its a natural supplement with no side effects and not terribly expensive. Good luck!
HiI have actually been diagnosed with severe RLS and am now on clonasapam which in all honesty doesn't seem to be working. I'm also on a high dosage of gabapentine. Over the past 12mths it has got worse and most nights only been having about 3hrs of sleep a night. 5 days ago I started taking CBD oil ( Grass & Co Rest ) and have slept right through every night since. Its still early days yet but so far it has given me rest from my RLS.
Watch whose advice you follow on here when it comes to prescription meds. Sue only repeats the same thing over and over; i.e., gabapentin, iron, etc. Be VERY cautious!! Gabapentin is not for everyone. It has many side effects, and you should only use these meds under a physician's guidance, not a layperson on here like Sue who doesn't know your medical history. What works for one may not work for another, and since Sue is not your doctor, she could easily cause more harm than help. Beware!!
Come on. Since gabapentin has to be prescribed by her doctor, s/he obviously knows her history and it would obviously be under his/her guidance. I repeat the same thing over and over because that is what is recommended in the Mayo Clinic Updated Algorithm on RLS.
I personally want to thank you Sue for your help to those of us with RLS. I have benefited from your explanations that are consistent with the Mayo Clinic guidelines! I have been so grateful for your willingness to respond to questions here and for your care for others! I have never felt you offered harmful advice.
The minute I lay down, my feet began kicking and I have to get up and walk. I do housework or other work that requires walking. When my feet calm down, I sit on my recliner with my blanket and my feet on the floor. When I doze off, I get up and go to bed. I find that if my legs are hanging to the floor, it helps. I hope this helps
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restless leg syndrome -I'm a newbie here, but an oldie with rls
