Restless legs syndrome

[Suabbott]

Hello my name is Sue, I have dreadful RLS, does anyone else get it in their back,arms,collarbone and jaw bone?

[involuntarydancer]

No; that sounds dreadful. Are you on any medication for it?

[Suabbott in reply to involuntarydancer]

Yes I take ropinerol but I'm on the highest dosage I'm allowed to take and my rls is getting worse. It's taking over my life and I can only describe it as torment.

[dhenly in reply to Suabbott]

I feel your pain - I am going through the "trial every med" stage and its getting worse

[Suabbott in reply to dhenly]

Hope you get sorted soon 😶

[Hidden]

I get it all over and it can be dreadful. It has always been at its worst when I was suffering augmentation - the drugs were making things worse instead of better.

Maybe if you give some info on drug you are on we might find some answers with you.

You are very welcome here btw, hope you get answers

[Suabbott in reply to Hidden]

Thanks Raffs

[Madlegs1]

Who diagnosed rls?

[Suabbott in reply to Madlegs1]

Doctor

[Bossy50]

Hi yes I get it in my arms and across my collarbone when it's really bad. Maybe it's time for a change in medication for you? I have a bath in Epsom Salts (Magnesium flakes) about an hour and a half before bed when it's unbearable, it does make it easier for me...

[Bossy50 in reply to Bossy50]

I should also point out that I've tried most medications over the last 9 years and Codeine or other Opiates are the only thing that works for me but sometimes If I misjudge the timing of taking my meds, the RLS needs a good soak in a Magnesium salt bath as well...

[Suabbott in reply to Bossy50]

Thank you, will give that a try.

[Kaarina Administrator]

Hi Su

What ropinirole dose are you on at this time?

[Suabbott in reply to Kaarina]

Hello kaarina. I'm on 4mg a day

[Kaarina Administrator in reply to Suabbott]

Hi Su

That is too high a dose of ropirinole to be on. You may be suffering from Augmentation. Unfortunately, I believe your doctor is ill informed to have allowed you to increase the dosage to this level.

This link may be of help to you. rls-uk.org/news/augmentation

There are lots of threads/information on the forum regarding Augmentation. You can use the Search Button and type in 'Augmentation' to find these.

[Suabbott in reply to Kaarina]

Thanks, will look into this

[involuntarydancer in reply to Suabbott]

I agree with Elisse. Your all over body symptoms are sadly fairly typical of high dose dopamine agonist augmentation. Unfortunately if it is augmentation it is advisable to undergo the very arduous process of withdrawing from the d/a med (typically very exacerbated symptoms with barely any sleep for 12 to 14 days but gradually improving thereafter). The good news is that often symptoms revert to close to pre- dopamine agonist days eventually.

In any event it is worth getting your serum ferritin levels checked and taking an oral iron supplement if they are low - ie anything below about 100 - you will need to make sure you get the actual figure - it is not sufficient to be told you are ‘normal’. Normal for normal people is different (can be as low as 20 which is far too low for those with Rls).

[Joolsg in reply to Suabbott]

You're definitely suffering augmentation Sue. The fact the RLS is now in your back, arms & face is the giveaway.

I too had symptoms in my back, arms and face, came on here, was helped by the very knowledgeable people and was advised to get off ropinirole by reducing slowly over months with the help of an opioid painkiller ( tramadol).

It's a horrible, horrible process but once off ropinirole and through the withdrawal period , things do get better.

I've done it, and so have Nick-the-Turk and Bganim over the past year. Read their posts to see their progress.

Once off ropinirole, you can use other meds such as pregabalin and/or oxycontin or tramadol.

Do read the links on augmentation- every day we get people on here suffering from it. That's because the dopamine agonist drugs work brilliantly for years and then stop and it's affecting more and more people. GPs and neurologists are totally unaware of this and therefore you have to be your own RLS expert. There are a few neurologists in the UK who are up to date, but not many.

Let us know how you get on.

[Suabbott in reply to Joolsg]

Thanks for your post joolsg, been googling augmentation but not getting very far. Can you please explain augmentation to me in layman's terms. Thanks

[Suabbott in reply to Suabbott]

Just found article on augmentation. Will be booking an appointment with my doctor now. Thanks for your help. I can only describe this as hell and it's getting worse. I'm so pleased that I came on to this site. Bless ya 😊

[Suabbott]

Don't like the sound of coming off Ropinerol without any other medication to take its place for three days. Not looking forward to that at all, nooooo!!! Think I will have to do this when I'm next on holiday from work.😱

[Joolsg in reply to Suabbott]

Definitely don't come off it without any other medication to take its place. You reduce the dose of Ropinirole by 1mg every 2/3 weeks and make sure you have some ferrous bisglycinate (gentle iron) to take every other night on an empty stomach last thing ( it has helped a few people). Ask your GP to take full bloods and your serum ferritin needs to be above 75, preferably above 100. Check you're not taking any meds or supplements that can make RLS worse.

Tell your GP what you are doing so they can help by prescribing tramadol ( 50mg twice a night ) to help with the withdrawal symptoms.

If you are on the 4mg pills, ask your GP for 8x 0.5 mg pills or 4x 1mg pills so you can start the smaller doses. I remember biting the 1mg pill in half at the last stage of withdrawal.

The last pill is the hardest to stop as your body screams for more of the dopamine agonist so it's essential to book time off work for when you stop that last pill. You'll have about a week to 10 days of little or no sleep and RLS most of the day. BUT it will pass and you will come through the other side.

Start the new drug regime, say pregabalin with tramadol or codeine 3 weeks before you take the last Ropinirole ( pregabalin takes 3 weeks to take full effect).

Your GP can also prescribe Zolpidem, a sleeping pill to help during the withdrawal stage.

Print off everything on here about Augmentation and withdrawal and refer your GP to the RLS UK website. rls-uk.org/

Come back to ask any questions or for help or while you're getting off ropinirole.

[Suabbott in reply to Joolsg]

Thanks joolsg. I've been drinking Tonic water over the last couple of days and my rls has not been so severe. May just be coincidence but I was told Tonic water was good for rls.

[Joolsg in reply to Suabbott]

I think it’s a coincidence Sue. Tonic water & quinine don’t help RLS, but it could be placebo effect ( in other words if you believe it helps, then your brain makes it help).

I still think the only way you’ll get relief in the long term is to get off the Ropinirole. I used to dread the thought and lived in fear of running out of Ropinirole.

Are you on the one tablet of 4mg extended relief Ropinirole?

Jools

[Suabbott in reply to Joolsg]

I'm on 4 X 1 mg. Must have been having a good day when I had Tonic water and thought (after being adviced to try it) that it had helped. Never mind, just pleased to be able to chat with you all about this. People who don't have this problem tend to not take it seriously. I have rheumatoid arthritis and serious hip pain but rls is in a league of its own.

[Joolsg in reply to Suabbott]

I agree Sue. I have MS & the doctors/neurologists all take it so seriously but Yep, RLS is in a league of its own. I'd rather have MS any day.

[Suabbott in reply to Joolsg]

Bless ya joolsg, sounds like you have enough on your plate without the dreaded rls.

[jan_ET]

hi sue i feel for you- i have Rls on legs hips and chin - i take Siftol which helps - mine is caused by taking anti-depressants for years -im in australia but find thebest thing to do when they start is gp for a walk - needs to be in safe place as it is at might- after they start meds dont seem to help- hope this helps- oh and i take a mineral called betamin - take care - Jan

[Suabbott in reply to jan_ET]

Hi Jan, I too have been on antibiotics depressants for years so wonder if that is behind my restless legs. I find when I'm at work I have minimal problems with my legs but as soon as I try to relax, it kicks in almost immediately. I'm in England by the way.

[Joolsg in reply to Suabbott]

Hi Sue,

Check the list of meds which make RLS worse on the RLS UK website. Most ssri will make RLS worse.

Take care

Jools

[Suabbott in reply to Joolsg]

Will do joolsg. Thank you x

[Bossy50 in reply to Suabbott]

I work in Mental Health and assure you some SSRI's do cause RLS..it is usually to be found on the list of side-effects on the info leaflet in your box of tablets from the chemist somewhere. You can transfer to an anti-depressant called Trazadone, which is very effective for a lot of people, helps with sleep and provides some calming to RLS also. It's a Tricyclic anti-depressant and routinely prescribed for peeps who cant get along with SSRI's. It was great for me.

Surely taking an Opiate while coming off the Ropirinol is the best way to go?

[jan_ET]

hi Sue yes it is the antidepressants ihad todectease mine and Anafranil icant take. For fay time take Sifrol 0.125 sliw acting and 3 x 0.25 Sifrol at night icant sit stillfot long eg a movie a meeting or stand in the one spot at all but at night when nothing helps ihave to go for walk. i have to live a quiet life as well - jan

[involuntarydancer in reply to jan_ET]

Jan, you are on a very high dose of Siffrol. It may be worth being aware that at a certain point siffrol stops helping with Rls and actually starts to contribute to the symptoms in a process called augmentation. The type of symptoms you are describing are classic indicators of augmentation and it may be that you are suffering them needlessly as they are attributable to your medication rather than your condition.

Unfortunately, the only way to know is to withdraw from siffrol which is a difficult process, has to done gradually and causes a temporary worsening of symptoms. If you do manage to withdraw however you might well find that your symptoms settle down a lot and are only in your legs.

[Bossy50 in reply to involuntarydancer]

But why not take Opiates while coming off anything else...you wont feel the w/d's then ??

[Joolsg in reply to jan_ET]

I agree completely with involuntary dancer. Like Sue, you have RLS in all those places due to Augmentation. Only solution is to get off sifrol slowly.

Also check the list of anti depressants which make RLS worse- most ssri are bad.

[Suabbott in reply to jan_ET]

Hi Jan, yes I find I can't stand still for too long, I feel for you because it's flipping horrendous. It takes over your life. I find I can't sit with my legs on the floor, I have to have them up on a seat. X

[jan_ET in reply to Suabbott]

im the same i have to keep them up - no movies - but since i have found this sight and so many wonderful people i have hope and now know how to proceed andnothing any doctor has told me thanks i will keep all posted - Jan

[jan_ET]

thanks so much it is duch a nightmare and there is no quality of life - i so want to get off siftol will do very slowly and start tonight/ do you know any antidepressants that are not ssri - thanks jan

[Bossy50 in reply to jan_ET]

Jan see my reply to Sua above re change in anti-depressants ok love xx

[jan_ET in reply to Bossy50]

thanks so much bossy i am sering my GP on Saturday well armed with all the amazing info i am getting fromthis web site - ive booked a looooong session wish me luck!!! xxx jan

[Suabbott in reply to jan_ET]

Couldn't agree with you more Jan, this is an amazing website. Some very knowledgeable people on here, I'm just glad I came upon it. Good luck at the doctors. 🖒

[jan_ET in reply to Suabbott]

thanks it will be interesting xxjan

[jan_ET in reply to Bossy50]

omg i do apologise about my spelling - will have to find spellcheck

[Ramones1234]

So sorry for you Sue. I have no right to complain. I am not mentally strong. I wish you peace from suffering this dreadful condition. Jason x

[Suabbott in reply to Ramones1234]

Thanks Jason, you too love. X

[nathanwilde]

Hey Sue. I get it inbetween my fingers (the webbing) and in my jaw and gums too.. makes you wanna dig your nails into your gums. I have found Noopept (research this) really helps to combat it and you can take it with your other medications. Controversial one here, but Cannabis is an absolute wonder drug for RLS. If you can, please try it before bed time. Be careful and don't over-do it. Don't take it with nicotine as the withdrawals make it worse. You can cook and eat it or you can use a vaporiser. Best of luck.

[Suabbott in reply to nathanwilde]

Hi Nathan, thanks for your message, have tried cannabis but haven't really noticed much difference. Over the past two days I've cut my ropinerol down from 4mg to 3mg and feel really pleased with myself. Here's hoping for a decent nights sleep. 😂

[Suabbott in reply to Suabbott]

Hope you get some relief from it Nathan, that sounds awful, in your gums.

[Suabbott]

My spell checker is a pain. I'm on anti depressants NOT antibiotic depressants lol.

[Bossy50 in reply to Suabbott]

I think we worked that out lol x

[bettygil]

I have been taking sinomet for years and it works for me but I think I am getting immune as the effects are wearing off. Maybe I will try something else like Ropininole

[junipurr]

I have suffered for a year or more and just been told I have bursitis too. Codiene helps but I cry many nites and my wrists twitch as much as my ankles. Any herbal ideas or diet?

[jan_ET]

yes sue i get it in my jawbone i think you are in the UK Im in Australia anf my Doctor put me on Betamin - it works

Hope this helps - Jan

[bergfex]

Hi Sue,

I'm a medical professional suffering from bad RLS since early childhood, stopping me from sleeping most nights.

As mentioned below, you most likely suffered from Augmentation on that high dose of ropinirole. Hopefully by now you managed to taper yourself off by now.

I take that as well, but only 2-3 times per week and 1mg only, to avoid Augmentation and other unpleasant side-effects.

Another potential remedy would be vaporised cannabis flower, if legally available in your jurisdiction. I use it when I don't take ropinirole, only ca 100mg flower (1 small pinch between 2 fingers) in a vaporiser. This doesn't have to much of a psychotropic (feeling 'high') effect but does help quietening down those legs for a far better night sleep than without it.

Hope, this helps and good luck for you on your journey

[shredderton]

I get it in my left leg and left arm/shoulder. Sux!