I have been reading messages on this site for a food few months now, but this is my first post. I will try to keep it short and to the point!
I have had RLS for as long as I can remember (at least the age of 10), but it was only officially diagnosed during my first pregnancy, 6 years ago (because that's when it became a real issue for me). Since becoming pregnant with my first child my RLS has become unbearable...so much so that I started medication with pramipexole straight after giving birth. I didn't breastfeed for this reason alone ..:and when I became pregnant again 4 months later, my RLS nearly drove me into a nervous breakdown. I was so desperate, I took pramipexole throughout my second pregnancy eventhough I was advised not to. thankfully my second little girl was born healthy....but even thought I would have loved a big family (I am one of six), I knew I couldn't face another pregnancy like my second one.
Now, 5 years later, I have been on all sorts of drug combinations, have experiences augmentation on ropinerole, have tried pramipexole, gabalin, tramadol and am now on pregabalin. I have no caffeine and no alcohol. I've tried yoga, iron tablets, magnesium tablets, magnesium oil, hot baths etc etc.....but lately nothing seems to help. Over the past few months I have resorted back to ropinerole, as that is the only thing that actually seems to work. I know this will eventually lead to augmentation and I absolutely dread this fact...but I don't know what else to do!!!
So I guess what I'm asking you all is: please can you tell me everything and anything that has helped you guys....as I wanna try it all.
I am only 40 years only and in the past 6 years my RLS has advanced beyond anything I could ever have imagined. It is now effecting me during the day and is effecting my arms too. I have a real fear that this is getting progressively worse with age and if I don't find a real source of relief, God only know what will happen for me!
Thanks In Advance. Katie x
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KatieRidgeway
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Katie- I'm really sorry for your experience. With your history of various medications- I would consider emailing Dr Mark Buchfurer at "rlshelp.org" - you will find an email option on the site and he is very good at replying within 48 hrs.
There is something triggering your condition that he may be able to pinpoint.
I'm sure you've looked at the UK site and meds to avoid- rls-uk.org there might be something in there to help you.
Hi Katie. I feel for you...more than you know. I have been on ropinirole for a bit over 15 years and it has been a God-send. Unfortunately, I am now going through the inevitable augmentation and couldn't be more miserable. The ropinirole still works, but to a much lesser degree. It takes longer to kick in and when it finally does, it's potency is a crap-shoot. I am at the point where I would do just about anything to get one night's sleep. Just one. If on one of those very few nights I do actually fall asleep, two hours is all I get. Madlegs1 is very well informed about this disorder so I would recommend taking the advice of contacting Dr. Buchfurer at rlshelp.org. That is very good advice in my opinion. I'm keeping my fingers crossed for you because I am at that point where I just don't know what to do but I do know that I can't live a happy & productive life with this disorder skyrocking out of control. Good luck to you my dear!!
Kratom saved me. Combined with a strict GF, Dairy free, zero processed food/GMO/alcohol diet and limit all sugar intake to 30 grams/day. Super hydration is huge as well. Half my body weight in ounces daily minimum. Low carb/high veg/moderate fruit.
Hope you found the best solution that works for you.
Have you tried low foodmap diet? It works for some. Give it a go if you haven't. Also try iron bisglycinate if ferritin levels low?
Good luck! And stay strong.
B.
Hi Katie, you have already got good advice here but I will add my wee bit.
Two drugs that gave me GREAT relief are Kratom and Cannabis. They are illegal in some places but they are much safer than many/all of the drugs you will have been prescribed and more effective too.
There is plenty of information about them online and if you check though my posts you will find links to all the info you could want.
The cannabis can be very strain specific so while one strain might not work, another could be fantastic it could be trial and error, (in fairness not the worst problem to have with cannabis ).
Re: Iron I found it ineffective if not taken in evening on an empty stomach. Taking it after I've eaten seems to nullify the effects so it might be worth trying GENTLE IRON, not say Galfer again.
If you are in the UK Targinact has been licensed for treating RLS so that could also be an option for you; its Oxycontin and I find it quite good.
Hi, although it's a perfect solution have you tried taking a vitamin combination of Iron, Folic Acid, Magnesium and Vitamin B Complex. I hope you get help soon.
Hi Katie,
First of all, I am young like you (just in case it helps to know that). Sorry for all you are going through! I augmented on Pramipexole 2-3 years ago, and the journey almost cost me my life. Even though it is still hard I am doing a lot better. What seems to work for me are compression stockings, since the tightness helps calm my movements. I also use a heated massager. I rub magnesium oil on my legs before bed every night. I take pineapple extract (called Bromelain), since my husband read somewhere that this protein extract helps against inflammation. I use Restless Leg Cream from Magnilife (can get on Amazon). There are 3 exercises I found online that are recommended for RLS. Type "healthline.com/exercises RLS" into Google and click on the first link. The exercises start halfway down the page. I do these when my symptoms get really bad and they help! If you need help staying awake and clear-headed like I do, dab some rosemary on your neck, under your nose, or behind your ears. I put some under my nose. If you need to calm your nerves like I do, do the same thing with lavender oil or Dr. Hauschka's Moor Lavender Calming Body Oil (I find that the latter is better). It's expensive but boy does it calm me down!!!! I hope these suggestions help!
RLS is a VERY complex biochemical imbalance. Nothing is simple. Here is current research on role of iron in RLS. If anything you'll realize that most RLS suffers have a predisposition to this and slight differences in diet, injury, or other body changes (pregnancy) can tip this predisposition to full blown RLS. movementdisorders.org/MDS/J...
Have you tried an exclusion diet? Either FODMAP or the low chemical diet?
If not it's very easy to try
Unfortunately I have no knowledge of how effective it might be while you are taking other drugs but I would think it's worth trying out immediately but check with your doctor first to make sure there is no reason why you can't go on a diet
Hi Katie your story sounds like mine. Pregnancy exacerbated my rls also. I tried all the above suggestions with only minimal success and nothing worked all the time until I tried kratom that I learned about here. That is the only medication I take now besides iron bisglycinate at night. I'm in the US were kratom is legal and I have not had any side effects unlike augmentation from the ropinirole I had a hard time withdrawing from. After much research and no good options it was the lesser evil for me. I hope you find relief
It's frustrating, isn't it?? Have you tried Kava tea? Worked wonders for me. I'm on Mirapex but honestly the only relief I've found is with the tea and 300mg Lyrica (which I take for migraines).
Hi everyone. Thank you all for your advice and support...I have been blown away by the abundance of information and love 😜 . It really is comforting knowing I'm not alone with this awful condition.
Firstly, I live in the uk and have been seeing my GP regularly over the part 6 year trying to combat my RLS. My doctor had never even heard of this condition before, but in fairness to her, she has done loads of research on my behalf and is always willing to prescribe me whatever I ask her to. I have had my iron levels tested on numerous occasions and it has always been normal....however having read on this site about iron bisglycinate and ferritin levels, I have booked in to get my ferritin level checked next Wednesday. What level should I be aiming for? I am also hoping to be prescribed melatonin to get me off to sleep at night, as I can lay awake for hours regardless of whether or not my RLS is playing up. Has anyone any experience which this?
I took Raffs advice and smoked alittle cannabis last night without taking my meds....and it worked an absolute treat! So much so, I'm gonna have alittle more tonight😜! I had heard that cannabis was good for RLS, but had never actually been brave enough to Not take my meds while smoking it. Anyway, I am delighted with the result and will use it as a means of relief now and again for sure...:but it is not something that I can realistically sustain (as I have young children etc). So Thank you Raff for that pearl of wisdom😋.....very much appreciated!
I have tried magnesium oil, restless legs cream, folic acid and vitiman b but with no noticeable effect.
I will of course try compression socks, pineapple Extract, kava tea, targinact, pedals etc.....so thank you all for your tips. I'll let you know how I get on.
Finally, I've never heard of the low food map diet, exclusion diet or low chemical diet....so I will research them and give it a go. And I will compose an email to dr Mark Buchfurar once I have the results of my ferritin level test.
As you all well know this condition is beyond frustrating. When I was augumenting from ropinerole as few years, I was in such a state that I would often think about ending my life as I could not bear the fact that my RSL would inevitiably get worse and worse with time.... so I do know how you feel Jess. I am in a better place now thank god....but still have bad nights like everyone else I guess 😕.
I tried melatonin for a brief while. It's a very light sleep aid, so it didn't help me. My doctor prescribed 10mg Stilnoct. I take 1 tablet on really bad nights and it knocks me out.
Hi i to have struggled in the past but i now take 100mg of pregabalin [ can up dose if needed but so far not needed ] at 14.00 hours and two codiene phosphate 60mg at around 21.00 hours and that combination seems to do the trick for me, still have a few bad days in and out but nothing like i used to have, but as we all know on here what works for one dose,nt always work for another.Please stay strong there are people on here that will talk to you day and night they pulled me back from the dark depths of how RLS can get to you more than once
please read my old posts if you can to see how low i was at one point low enough to think about ending it all now after many visits to GP with different names of meds etc and advice from here and like you mentioned the LOVE you feel from these people i am now in a place i could only dream of being at one point i know it could all change tomorrow but take each day as they come and so far so good ........... nick
Thanks for your message Nick. I looked back over your old post as you suggested....and my God, you were in a very bad way there for a while. I'm so glad you out of that bad place now....long may it last 😋!
I only when through that sort of depths when I was augmenting and at the time didn't realise there was any alternative to dopimine drugs (so I saw No light at the end of the tunnel)! Through this site and others I've come to realise there are other options....although none come close to the effectiveness of ropinerole (for me anyway).
I am currently taking 200mg of pregabalin everynight but recently I end up taking ropinerole in the middle of the night as the pregablin just isn't doing the trick. Maybe I should just up my does of pregabalin or maybe l need another drug to work with it like you do. Hopefully my GP might have some suggestions next week....but I doubt it (she normally prescribes whatever I suggest).
Thank you Tasmania....I will definitely email the good Doctor, but I'm gonna wait until I have the results of my blood test first. On that note....while I getting my ferritin levels tested, what other things should I ask them to test for....magnesium?
Hi Katie, as I understand it you are now back on ropinerole despite having augmented on it previously. I know that there are some cases treated by Dr. Buchfuhrer where there was previous augmentation on a dopamine agonist and the sufferer is now back on it, usually in combination with other drugs - opioids and/or anti-convulsants (such as pregabalin).
I think that the trick is to keep the dose of the dopamine agonist at the lowest effective level and NEVER to increase it. If the dopamine agonist starts to lose effectiveness, then it may be time to take a break temporarily (either reduce the dose or cut it out) and use the other medications in greater quantities to try to cope with symptoms. In general, a cocktail of drugs, each at a lower dose, can be quite effective against RLS - though it does sound like you have tried combinations already.
I augmented on pramipexole (dopamine agonist) and after I came off it I struggled to find a regime that worked (opioids caused central sleep apnea and anti-convulsants had no impact on urge to move). Nothing works so well for me as the dopamine agonists.
Now I have two regimes which I interchange every 4 to 8 weeks. I take kratom for 6 to 8 weeks, then I use neupro for about 4 to 6 weeks. This system allows me to reset my sensitivity to either drug while I am on the other. So far (only about 8 months in), it is working reasonably well. I also eat carefully and very little (all drugs seem to work better when I go to bed fasting). I use cannabis also but more to help me to sleep (RLS has caused insomnia) - I don't find it very effective against the urge to move symptoms. Kratom is not legal where I live but I order it from a dealer in Amsterdam - have had no problems with that so far. Cannabis is also illegal and I find it difficult to source. Have started growing my own consequently - am middle aged professional but also illegal drug user - thanks to RLS!
Iron is also very important in most cases. You should know your serum ferritin level (the actual number not just that you are 'normal').
For immediate relief of symptoms I use a system of yoga stretches. I also find it helpful to lie on my back with my legs in the air against a wall (backside as close to the wall as possible) or on my front with my knees drawn up (sort of like kneeling but torso folded forward so head is on a pillow - makes me sound flexible but I am not!).
I really hope you find a solution that works. It is hard to suffer RLS at any stage but with young children it is particularly heart breaking. I look back on my children's early childhood, when my RLS was completely untreated and wild, and feel that they had to grow up quickly to accommodate my inability at times to function properly. Ironically they might have had an easier childhood if I had discovered the benefits of kratom and cannabis when they were young.
Thank you involuntarydancer for all your info. I am seeing my doctor on Wednesday so I will make some notes, going from your advice and see if she can prescribe me something new.
It is a very good idea to alternate two different drugs (I never thought of doing that but it make perfect sense)!
I have never even heard of kratom....I'm guessing it is an illegal drug! Will do some research on that one.
I have tries hot yoga and found it great for the immediate few hours after practicing it....but no longer than that.
I have been given loads and loads of great advice on this thread (a lot of which I had not known). I will give it all a go until I find something that works for me. Thank you all for your advice and encouraging words....it's helped me more than I thought possible.
Katie xx
KateRidgeway,
Hi. I was just rereading your original post and this thread and am wondering how you're getting on?
Thank you for your concern....Sorry for the late reply but I've just been waiting to see how things go before replying.
So...Basically I've been to the doctor who has prescribed me 2 weeks worth of zopiclone to help me get off to sleep (which has been amazing but I know it's not a long term solution)! I am only taking a half one every few days, as want to make them last as long as possible.
I had my blood test but am still awaiting the results. I asked her about my ferritin levels in my previous blood tests which I had done in 2011 and 2013.....and she said my levels were 200 and 92 respectively. I know from reading this site that the level for people with RLS needs to be in excess of 100, so I guess ferritin levels is Not my issue!
At the moment I am trying to rotate between ropinerole (about 50mg) and pregabalin (100gm) every couple of weeks, in order to reset my body's sensitivity to each drug, as advised by involuntary dancer. It's working well as I'm on the ropinerole now....but I expect the pregabalin won't be as effective given that I will need to build it up in my body over a few days intake (if that makes sense).
Anyway, I have written a long list of each and every piece of advice I've received on this thread and Im going to explore every single one of them in turn to see what works best for me.
Most nights are ok but having a bad one tonight (it's nearly 3am and I've had no sleep at all so far)!
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