I first experienced RLS when I was pregnant with my daughter, I was assured that that the condition would go away once my daughter was born. How wrong was I to believe that!! My daughter is now nearly 5 and my RLS is worse than ever. After being put on lots of different medications including anti-depressants I was given ropinorole which at first helped but I had to keep increasing the dose just to try to get to sleep at night. Eventually I was taking such a strong dosage I was so tired and hardly had any energy for my daughter I asked to come off them and see a consultant. My RLS started in my knee joints with an unbearable urge to move them which is now the same for my elbow joints. I have no pain just the urge to constantly move them. The consultant recommended pramipexole tablets which I am now taking. I take 0.088 mg 3 times a day. They sometimes help and sometimes don’t. My worry is that they are addictive and the doctors seem happy to just increase the doseage if I tell them it’s not working.
To be honest RLS has taken over my life and is robbing me of quality time with my young family. I am in my early forties and feel double my age as I have no energy due to nearly 5 years broken sleep patterns. I work full time (desk job) and over the past few years have gained over 3 stone due to needing sugary snacks and fizzy drinks to try and keep my energy levels up to get through work and the day. Can anyone offer any advice of any similar experiences? In particular suffering with RLS in knee and elbow joints? Or developing RLS in pregnancy which has got worse? I’ve lost faith in doctors as all they seem to want to do is put me on stronger and stronger medication which is robbing me of any quality of life. I’ve tried massage products, iron, magnesium supplements and both hot and cold baths. Are alternative therapies worth exploring? The thought of living with this condition for ever is really getting me down. Any help or advice is very much appreciated!
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Frazzledmax
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Hello, welcome to this forum. I hope you find it helpful. I think you will!
I'm sorry to hear of your suffering and hopefully I can give you some information myself and point you to other information which can help.
Just to say firstly that it would be more helpful for you if you were to complete your profile by indicating which country you live in as situations in different countries aren't exactly the same.
It is possible for women to suffer RLS during pregnancy and recover after. However to be told that it will definitely disappear was misleading - as you know.
Please excuse this being long winded, but it might be helpful to give you some ideas about how you've ended up with the symptoms you're having.
The first thing in your case in that your description of your "RLS" is a little unusual. People with RLS rarely say they get it in their joints, in fact personally I've never come across this at all. People usually say they have to move their "leg" or "arm" not knee or elbow.
Hence for the sake of thr rest of what I'll write I am ONLY assuming you have RLS. I cannot 100% confirm that your symptoms are RLS at all.
If you're unsure about this yourself you can check this by looking at the RLS diagnostic criteria which you will find here -
Further in relation to this, somethig else it's important for you to know is that just because some doctor has told you that you have RLS doesn't necessarily mean you have. Doctors are, on the whole quite ignorant about RLS.
Sometimes, Drs fail to diagnose RLS at all and sometimes they diagnose other conditions as RLS, when it isn't The MOST significant thing is however, that it's unusual for a DR to have any real knowledge of how to traat it effectively and you are a victim of this.
Thoughts on RLS differ. It is more generally thought that there are at least two types of RLS.
Primary : an inherited condition which may or may not be later triggered by life events.
Secondary : a condition with the same symptoms which is caused by some other underlying condition, e.g. anaemia, diabetes, thryoid dysfunction etc.
One difference between the two is that with primary RLS there may be NO underlying condition and with secondary, if the underlying condition is corrected, the RLS may disappear.
Pregnancy can be example of secondary RLS. If it is, then after pregnancy it should disappear. If it doesn't then it seems that you have primary RLS, the prengancy triggered it.
It is significant then that you are completely certain that you aren't suffering from iron deficiency anaemia, iron deficiency without anaemia or vitamin B12/folate deficiency.
The tests any doctor should have given you are serum iron, transferrin saturation (TSAT), ferritin, haemoglobin and vitamin B12/folate.
If either or both serum iron and TSAT are low, this indicates iron deficiency. If haemoglobin is also low then you have iron deficiency anaemia.
In this case it is possible that iron therapy can reverse any secondary RLS. Similarly vitamin B12 deficiency if corrected can improve RLS symptoms.
If ALL blood tests are "normal" this would seem to indicate you have primary RLS, that is, unless you have some other condition as listed above.
I am sorry to tell you, currently, primary RLS is incurable.
IN THE CASE OF PRIMARY RLS
Pregnancy may have "triggered" the RLS because your "iron stores" have been depleted. Iron is stored as ferritin, one of the tests listed above. If so, it isn't necessarily true that ferritin levels will automatically rise again and certainly not in a short time.
In fact in people with RLS ferritin levels are associated with low levels of iron in the brain. This is known as Brain Iron Deficency (BID) and is one of the main causes of RLS.
NOTE : people with RLS need a higher ferritin level than people without RLS. For somebody without RLS can have a ferritin level under 50, with no problem. Somebody with RLS needs a ferritin level of at least 100 and ideally over 200.
The FIRST treatment any doctor should advise for RLS then is iron therapy. If iron deficiency is present it will treat it. If iron deficiency isn't present then it will help raise ferritin levels.
The internationally accepted recommendation for iron therapy for RLS is this
If TSAT is less than 45%
1) If ferritin is less than 75 start an oral iron supplement.
2) If ferritin is between 76 and 100 you may need an IV iron infusion.
I note that you have tried taking iron and it has apparently failed to help
There are several possible reasons for this
a) Your ferrtin level is over 75
b) You were taking the wrong type of iron
c) You were taking it the wrong way
d) You weren't taking it for long enough
e) It dosen't work for everybody and you're one of the unfortunate ones
NOTE how effective oral iron is depends NOT on how much you take, but how much you absorb.
a) If your ferritin is over 75 then it becomes dificult to absorb any iron, i.e. less than 2% of what you take
b) Drs still widely accept that the more iron you take the better it will be and prescription iron supplements contain a high amount of iron. However this is more likely to cause gut problems. In additipn recent freseartch shows that dose of over 60mg can lead to LESS iron being absorbed.
A popular iron for RLS you will find is ferrous bisglycinate (gentle iron), This is an over the counter supplement and may not be available in some paharmacies.
c) It is still widely accepted that acid in the stomach increases iron absorption. Hence you may wish to take a vitamin C tablet or folic acid tablet at the same time.
In addition antacids or anything that reduces stomach acid should not be taken at the same time. This includes common antacids and magnesium. In addition taking proton pump and H2 inhibitor antacids can prevent iron aborption at any time.
It is widely accepted that you take iron in the evening when daily cyclical changes in metabolism favour iron absorption.
It is also widely accepted that you take iron at least 2 hours after eating.
Recent research also shows that if iron is taken avcery OTHER day NOT DAILY, this increase the amount of iron absorbed by up to 50%
The SECOND consideration for RLS is whetrher there is anything making the symptoms worse. This inmcludes "tyriggers" short term and aggravating factors long term.
Triggers include alcohol, sugar caffeine and other stiumlants e.g. nicotine.
The main aggravating factors are medications used for other conditions.
The worst drugs are ANTIDEPRESSANTS. In some cases, stopping an antidepressant may be enough to eliminate RLS symptoms.
Others include anything with a sedating antihistamine (neuroleptics, some cough meds, anti-allergy meds, sleeping aids or anti-emetics), dopamine antagaonists e.g. some anti-emetics plus many oithers.
MEDICATIONS FOR RLS
These should really be a last resort if RLS is severe and frequent. Unfortunately as it may take longer for iron therapy or eliminating aggravating factors to work, people may start taking drugs prematurely. This is a matter of choice. But if drugs are successful this does not mean riotherapy and aggravating factors shojuld be ignored beccasue it is still possible the drugs can be reduced or stopped later.
In ignorance many Drs are still prescribing a dopamine agonist (DA) for RLS, this includes pramipexole, ropinirole or rotigatine.
This is a HUGE mistake. These are no longer recommended as the first drug for RLS.
In addition the dose should be kept to an absolute mimimum LOW dose only
In addition if the drug should start to fail, on NO accouht should the dose be increased.
In addition the drug should not be replaced by another DA
You may by now be getting an impression of how ignorant your doctor is!
The reasons for all these are that DAs have a very high risk of a major complication called augmentation and another complication called Impulse Control Disorder.
The drugs now recommended as the first for RLS are the alpha 2 delta ligands, gabapentin, pregabalin or in the US gabapentin enacarbil.
If you Dr did not warn you about these complications or these alternatives, it's not simply a matter of ignorance they have also neglected their legal and ethical obligations to inform you. I note recently in the UK somebody has successfully sued their Dr for doing this.
Enough is enough, there is a lot of information here. I will however give you one more link to the latest recommendations for the management of RLS which I suggest you read thoroughly.
Just for info, I also have RLS in my knees and occasionally elbows. Like you I have never heard of anyone else who experiences it like this either, but it’s definitely RLS. I have no joint problems at all just the usual dreadful crawling sensation but right in the knee that builds until I move. If I refuse to move I will get an involuntary kick as in PLM disorder. I’m 70 now and I’ve had it since my 20’s .
Thank you for your comprehensive reply to Frazzledmax. I’ll send her my empathy and best wishes .
It seems you may get the sensations only in the joints but the involuntary kick is nothing to do with the joints. It's muscular and is therefore clearly RLS.
Thank you Amelanchier, that’s exactly how mine is. I try to keep my leg or arms still if I can hear it but it’s builds and then moves involuntarily, it’s reassuring to know I’m not the only one! Best wishes to you
Hi there, I'm a newish lurker, on here because I've been taking ropinirole for a little over a year and starting to have mild breakthrough symptoms (a familiar story here, I know). I never felt it in my joints before, but this past week I was getting an odd sensation in my right ankle joint - started as a tingling pain, then became the familiar rls crawling/ have to move periodically sensation. Very weird.
Yes it’s the most horrible, irritating and weird sensation is’nt it, and quite difficult to explain to people.
I’m not on any meds and try to cope with various distraction techniques. When I’m up in the wee small hours with a snack or watching TV, I think of all you guys on this forum and know I’m not alone 😊 .
I hope your breakthrough symptoms remain mild or go away.
Thanks! I started an iron supplement last night, it seemed to help. So far my ropinirole prescription is quite low, just .5 mg, but that's about as much as I want to take. The iron was interesting; felt weird falling asleep, but on the plus side no crawling in the legs & slept pretty much through the night, so a win overall. I'm hoping to avoid having to take anything stronger, but time will tell.
Before I finally went to a doctor, I took magnesium supplements for years, both orally (magnesium malate) and topically (creams and magnesium oil sprays). I don't know if it happened for anyone else with magnesium, but after a couple years I did suffer augmentation from it (not knowing what was happening). I did have a couple years of lovely, normal sleep patterns, though, and stopping it didn't cause any withdrawals as far as I know. It's been over a year, at some point I may try taking that again, just to see if it can work after taking a break for so long.
I also take a 5mg thc gummy each night, and that helps a lot. I don't get a high off it, just helps me sleep.
Thank you so much, just to have this forum and know that people understand how awful this condition gives me comfort.
You’ve given me more information here than I’ve had from GP’s over the past few years. Thank you I will look into it all probably in the early hours when I’m awake!
I’ve had blood tests in the past which have also shown my iron levels are low, GP’s have put me on strong iron tablets that did not seem to work but the comment you made about it’s how much iron my body absorbs is very interesting. I had not thought of it like that before. I’m going to ask for another blood test from my GP.
I appreciate the comment concerning augmentation. I am determined to come off medication for good!
Sorry to hear this. I think you're in full blown augmentation. Read all you can about it and the only solution is to reduce very, very slowly and start a non dopamine agonist med. It's horrible but once off Pramipexole, your RLS will become far less intense and may even disappear if you raise ferritin levels abovr 250. Your story is the same as mine and I'm now RLS free and sleeping 8 hours every night. There is light at the end of the tunnel.
Thank you so much, knowing people have gone through the same thing and come out the other side really gives me hope.
I intend to do as much research as I can. I’ve had to fight GP’s every step of the way with this and I’m determined to get my life back and get out if this awful cycle!!
Read all you can. GPs sadly know zero because RLS isn't taught in the UK despite it affecting 1 million, 100,000 seriously.I get very, very angry at the lack of knowledge and support and the negligent treatment. You should never have been prescribed Pramipexole as you augmented on Ropinirole and should have been advised to get off it and onto pregabalin.
Read all the pinned posts and posts on Pramipexole and you'll see so many are going through the same and their doctors have no idea how to help them.
There is light at the end of the tunnel and you will get off dopamine agonists and onto better treatment.
As Elffindoe advises, raising serum ferritin is essential. If only doctors knew about this, you perhaps could have avoided meds.
I honestly cannot thank you enough for the advice and support. After so long I’ve felt in my own with this, GP’s we’re dismissive of me and straight away out me on medication. I do feel angry as I’d just had a baby and was trusting my GP to know what was best for me. After 4 years I found a GP who listens but has openly admitted he has no idea how to treat RLS.
Early hours of the morning I have plenty of time to research so onwards and upwards. This forum has given me renewed hope 😊
You're amongst friends. So many of us have been in your situation. I knew NOTHING about RLS and trusted the neurologist who put me on Ropinirole. To be faur, back then it was a new med and nothing was known about augmentation. But there's no excuse today. There's so much good information and research. The US experts are about 10 years ahead of the best UK doctors so we read all their research and medical textbooks. The more you learn, the better the treatment you'll receive.I bought 'Clinical Management of RLS' by Drs Buchfuhrer, Allen, Lee and Hening. It's not too difficult for non medics and I take it to all appointments.
Most people with severe RLSbecome expert patients because there's no alternative. Read all the posts from the last week and the replies and you'll learn so much.
Start taking ferrous bisglycinate every other night while you wait for detailed blood results, start reducing very very slowly over a minimum of 3 months and in the meantime, apply for medical cannabis via project-twenty-21 as cannabis was the only thing that helped me get any rest during the tough withdrawal. You'll have to apply privately and pay for the cannabis but it'll be worth it to have ready for when the tough withdrawals start.
Keep us updated and everyone will help you through withdrawal and advise on the alternative meds to take afterwards.
The words Thank you do not cover how grateful I am to have finally found a group who not only understand what I’ve been going through but who have give me advice to get through this and come out the other side and maybe even resemble the person I was before this nightmare!!
Much empathy Frazzledmax , like you I also experience RLS in the knees and occasionally elbows. I am 70 now and like you mine started in my 20’s but take heart, you will get your quality of life back armed with all the help and knowledge on this great forum! I wish you all the very best!
Loads of good advice already. A quick suggestion on sugary drinks and snacks. Firstly some people find sugar makes RLS worse although not everyone. Secondly complex carbs and regular meals are better than snacks and sugary boosters. You will probably be aware that the spike in blood sugar after a sweet snack is followed by a worse dip so it's not a good solution for energy levels during the day and you'll potentially be adding other long term issues to deal with such as diabetes. Best options are unsweetened cereals like porridge, wholemeal bread, crispbreads, bananas, and try to eat at mealtimes. You obviously have loads to cope with already and the snacks probably boost your mood as well but just concerned that long term they may not be the best way to go.
Thanks for the advice. I’ve put weight on through the snacks plus some of the medication has caused weight gain. I decided enough is enough and I’m determined to get off the medication and get back to the healthy weight I was not only for myself but for my daughter too 😊
Hi Frazzledmax, I was replying to someone earlier in this thread and thought of something that helped me for a while: magnesium supplements. Orally, I found magnesium malate to be most effective, and topically, there are sprays and lotions, both helped me quite a bit.
I stopped using magnesium because after a couple years, I did have augmentation with it, but on the plus side had no withdrawals that I know of. As a short-term assist, it might help. Also, the spray has a couple of interesting properties, it is anti-microbial and kills odors.
Couple of downsides: orally, magnesium has strong gastric effects (no matter how gentle the label says it is); it will give you loose stools. It's probably not wise to combine topical with oral supplements. Given a choice between one and the other, I'd suggest a good-quality magnesium cream as first line, and see if it helps.
That's disappointing they didn't help; the cream probably won't either, then. The first time I took magnesium, I felt generally just so good - not only for sleep, but moods as well. I was telling everyone they had to try it, but the reason it helped me so much was because my stores were so low. Didn't do much for anyone else I knew besides give them upset tummies.
I’m pleased it works for you. It’s all trial and error with RLS treatment, what works for one person might not for another. I’m just so pleased I found this forum and people who understand what RLS is and how awful it can be! It’s so nice to have each other and the support on here is amazing! Not to mention the advice I’ve had. I’ve honestly had more help from this forum than I have in years from doctors!
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