My Solution for Restless Legs/Body Sy... - Restless Legs Syn...

Restless Legs Syndrome

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My Solution for Restless Legs/Body Syndrome

37 Replies

I first had RLS following knee replacement surgery in September 2010. Over the years since this has worsened and can affect whole body. I have tried many medications without complete success reaching Ropinerole 5mg 4+ times a day and experiencing consequent augmentation.

Through being infected with a superbug last year and having extensive bone and heart surgery I had to have a wide range of pain killers etc, the effects of which prompted me to experiment a little. The result- NO RESTLESS LEG Syndrome unless I stop my current treatment or mistime it. The treatment is :-

approx 7.30 pm- a 5mg Ropinerole tablet with 4-5cc. of oral morphine of strength 10mg/5ml.

Before bed at 10.30 - 11.30 the same dose again.

I have been doing this for several months now with no apparent addiction or side effects apart from general tummy upsets but these are nothing compared with the benefits including full night's sleep.

Obviously I do not know how this/similar would help others but I cannot overemphasise the benefits of normal living!!

I hope this can help others.

Dennis Troman

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37 Replies
Madlegs1 profile image
Madlegs1

That dose combo would certainly do a job on the rls!🤗😆🤠

nightdancer profile image
nightdancer in reply to Madlegs1

We all know 20 mgs of any dopamine med is way too high for RLS.

I'm pleased that you've found a solution that is apparently working for you. I have read of the potential benefits of using opiates for RLS.

However I would just like to urge you to be careful. It appears to me you are making your own judgement about what dose to take and are doing so without medical supervIsion. You say no apparent addiction. Unfortunately, it's common in cases of addiction for people to deny or fail to recognise that they are addicted. They wrongly believe they are in control. You are not the best judge of whether you're addicted or not.

Take care.

in reply to

I,ve conveyed the wrong impression ! The experimentation and use are under the supervision of my GP. with advise also from the surgical teams who have been working on me this past year. I am lucky that my GP is sympathetic to the RLS problem, I have found others to be disinterested/inexperienced with RLS.

I would also stress that I am working to find the MINIMAL dose of morphine to control my RLS and it appears to be quite critical. More later?

in reply to

That's great. I was just concerned. Pleased that you have found such a good GP.

in reply to

Hi Segovia watch your Ropinerole dosage as i see its 5mgs, so you need to be aware of Augmentation. Its recommended by RLS experts to take no higher than 1mgs. Just as friendly warning. :)

in reply to

Thanks ELISSE2, I am very aware that the currently approved maximum for Ropinerole is 5mg., 4 times per day . This appears to be the only maximum level tested for RLS. For other conditions approval is higher.

In hospital last year there was a rather comical situation where 2 doctors and 4 nurses were gathered at my bedside while I experienced severe whole body convulsing because the pharmacy had failed to renew my ropinerole prescription and in any case wanted to limit the issue times ( whereas I needed to take as required ). The problem was solved by one of my wardmates,in much worse condition than me after 10 hours of surgery , charged down to the pharmacist in his wheelchair , grabbed him by the throat and dragged him to my bedside- result: 5mg of ropinerole and 10 minutes later all was calm.

I find that there are many in the medical profession who are fixed minded about RLS and fail to realise that there are those of us out there with considerable experience of " solutions " and sufficient brainpower to design experiments ourselves.

Fortunately , there are also doctors/surgeons with open minds. The consultant surgeon who carried out my heart removal surgery to remove a tumour caused by the superbug noticed the side effects of the strong painkillers I was given ( no RLS )

and suggested the experiment that has led me to the now.

I am full of gratitude for the NHS at it's best-I am alive now because of them-but have learned that persisting until you find the right medical support is vital.

All the best with your searching for solutions.

Dennis

in reply to

Hi, strong pain meds definately work for RLS, , i am just going to see if i have your dosage of your Ropinerole right. Is it 5mgs or 0.5mgs 4 times a day.. ?

in reply to

According to the medics, the maximum permitted daily dose is 5mg. four times daily but you'd need to check with your GP

in reply to

So you are saying you take 20mgs a day.!! That cant be correct surely.

nightdancer profile image
nightdancer in reply to

If you are saying 20 mgs, see my other comments. I HOPE we are missing a decimal point, because there is NO way 20 mgs is a dose for RLS. I have been managing groups for 28 yrs, and I know for SURE, that is a huge no no. having said that, I take opiates for RLS, nothing else works for me, and I have tried them all.

in reply to nightdancer

You need to look at my earlier comments. I take 2 x 5mg per day!!

smilingjane profile image
smilingjane

Hi Dennis

Reading your story is heartwarming. You have been very poorly and eventually have found relief. I am so pleased for you. I know what RL is like all over the body and it is tortuous. I too take an Opiod, (Longtec) - 15mls per 12 hours and it enables me to stay in bed and rest even if not all the time sleeping. For the first time in years I can watch the clouds go by without having to immediately get out of bed on waking.

Good luck to you with everything going forward.

Jane :)

Oscarsaurus profile image
Oscarsaurus

I am so happy you have found a solution that helps but a word of warning ! Up until recently i was taking morphine plus Oramorph (liquid morphine) and it was the weaning off this which made my rls creep from under the woodwork. Some say the morphine just masked my rls but others say it was a side effect of weaning off the morphine. Either way i have suffered ever since.

I am sorry to say that you are addicted to the morphine even tho not by choice , i was prescribed mine for chronic back pain and you will become tolerant to the dose and have to increase and increase. That was why i decided to wean off the morphine. So please me careful. I now take codeine which is also addictive but this helps my pain alittle but also helps my insomnia and rls. Good luck

mmb8083 profile image
mmb8083

Wow, I have never heard of anyone taking 5mg of Ropinerole 4 times a day. That seems to be an outrageously high dose. Are you sure that is the correct dose?

in reply to mmb8083

That is the maximum permitted for RLS-- you should see what's permitted for Parkinsons Disease !!!

mmb8083 profile image
mmb8083

I'm certainly no expert on the subject as many of the people on this site certainly are but I did a quick copy/paste. I found this info when I looked up Recuip on internet:

Dosing for Restless Legs Syndrome:

The recommended adult starting dose for RLS is 0.25 mg once daily 1 to 3 hours before bedtime. After 2 days, if necessary, the dose can be increased to 0.5 mg once daily, and to 1 mg once daily at the end of the first week of dosing, then as shown in Table 2 as needed to achieve efficacy. Titration should be based on individual patient therapeutic response and tolerability, up to a maximum recommended dose of 4 mg daily. For RLS, the safety and effectiveness of doses greater than 4 mg once daily have not been established.

mmb8083 profile image
mmb8083

I'm just pointing this out as a concern for the high dose you say you are taking.

in reply to mmb8083

I would re-iterate that the dose I take is half the maximum, ie: 2 x 5mg per day and this is approved by my GP/medical teams

nightdancer profile image
nightdancer in reply to

20 mgs ia not the maximum, and neither is 10 mgs. Sorry.

I am just going to say this then i will leave it. The maximum dosage when taking Ropinerole is 4mgs as the highest dose for RLS. This is what doctors will read in their books or online. BUT, now because of Augmentation from all dopamine meds, the RLS experts and they are very much RLS experts who research and study RLS, are now recommending to take no higher than 1mgs Ropinerole. I am only saying this because i am also concerned on you taking such a high dose. If you end up Augmenting on the Ropinerole at that high dose, getting off it, which means weaning down slowly can be a complete nightmare.

in reply to

I can only add that while my medical team were fighting my superbug infection, involving 140 bags of high strength antibiotics and 4 knee changes ; that after each knee replacement the RLS jerking was centred on my knee and after surgery this was agonising-- we learnt VERY rapidly what worked and what didn't. Because of concerns ( including mine ) that I was taking more and augmenting, the simple trials with mixed painkillers and Ropinerole began and led to where I am now, which is at last having no RLS and not having to pace the hospital corridors all night ( I became known as the Wanderer) and not pacing my lounge either.I now sleep peacefully. I will continue to slowly diminish the ropinerole/morphine quantities but am not prepared to go back to the violent twitching that I had before.

Dennis

LotteM profile image
LotteM in reply to

Hi Dennis, I agree with several others about your (too) high dose of ropinirole. Many others have taken such (too) large doses. The thing is, sooner or later, your symptoms will worsen again, start earlier and especially during the day (which they apparently already do) and may spread to other body parts, most often arms. These are the telltale signs of augmentation. Opioids are currently recognised and backed up as a secure alternative for treating such refractory RLS. Please read up about augmentation. There is a pinned post at the top right on the website with lots of links to relevant info. Also, here’s the link to the review with recommendations on the use of opioids for RLS mayoclinicproceedings.org/a...

My recommendation would be to discuss with your medical team to reduce only one type of medicine at a time. And I would suggest to start with ropinirole, given the above and pinned-post info about its potential for augmentation. I hope you will be better soon, i.e. sleeping well but on far less medicines / much lower doses.

nightdancer profile image
nightdancer in reply to LotteM

EXCELLENT SOURCE OF INFO. :) Also, the RLS Quality Care Center at Johns Hopkins will also have that same info, and I know those doctors and many other RLS researchers over my almost 3 decades of researching RLS and talking to experts world wide.

nightdancer profile image
nightdancer

I have not read down thru the comments. but the HIGHEST dose of Ropinerole that should be used for RLS is TWO mgs per day. 20 mgs is waaaaaaaaay over the top and is a Parkinson's dose, and when we use those high doses, as you say, augmentation. NO ONE with "just" RLS and NO Parkinson's should ever be on that dose. Are you in the USA or the UK?

nightdancer profile image
nightdancer

You mentioned the word "augmentation". That is what happens to people with RLS when the dopamine is too high, and that is almost a given. 4 mgs USED to be the recommended high dose, but they have brought that down to 2 mgs BECAUSE of augmentation,. When the dose gets too high, it will actually make the symptoms worse over time. Also, dopamine withdrawal is a real thing, compared to withdrawals from cocaine,, literally. I will say the opiates might help offsetting the symptoms, BUT, you might not need them, if your dopamine dose was not so high. Sorry to beat a dead horse, but if you put augmentation into the search box here, you will see thousands of posts about it.

in reply to nightdancer

I am now exasperated with the constant "drum beating " about so-called limit doses. I entered this discussion group to try to help others and to open minds. I DO NOT have augmentation, nor morphine addiction, only a normal life and good sleep. I will now withdraw and continue my own way .

nightdancer profile image
nightdancer

We only say this things, because we CARE.

Paganpatrick profile image
Paganpatrick

Dear Dennis, I take Oramorph not for my restless leg syndrome but pain caused by Fibromygelia. As you know Oramorph is a very strong painkiller, we also tend to build up tolerances to it so it's not as effective and more is needed. But where do wage stop? I really don't know. I also take MST the slow release morphine tablets that give you relief over 12 hours without yer initial hit of Oramorph.

My main treatments for RLS are Pregablin, used for depression but also widely off scrip foar

So sorry he has gone, and sad, at some time those high doses will catch up with him and he will augment. No one should be taking 10mgs Ropinerole. Sorry he thought we were just going on about the dosage, we did because we were concerned, we all know what happens when taking a high dose of any dopamine med. :(

Kaarina profile image
KaarinaAdministrator

The forum member who started this thread has left our community.

Paganpatrick profile image
Paganpatrick

Sorry posting playing up so it's Patrick having a second go! Yes I use pregablin, it's prescribed as an anti depressant but widely prescribed off scrip for RLS and neuropathic pain. In addition I'm prescribed diazepam which I find brings much quicker relief. Exercise sounds OTT! But I do stretch my whole body, calves and wrists are my worst spots. Many use magnesium salts in a bath to relax and it's the best way to get it in the body. However I hate baths, I'm a shower guy! So I take an oral magnesium supplement and use a wonderful magnesium spray that I then rub into the affected area.

I say this with the best of intentions and in friendship, try and wean off the Oramorph for RLS. It's far too strong and is going to cause you problems long term. You are already getting augmentationa, Oramorph is highly addictive and some day a Dr is going to cut you off completely as it's not the prescribed drug for RLS. I'm sorry to say this but it's Amy personal experience and not a doctors opinion. At thee end of the day you know your body better than any one else.

Good luck and hope we chat again

PAtrick

in reply to Paganpatrick

He cant see or read your comment please note he has left the forum.

Sara_2611 profile image
Sara_2611

sounds like a great plan combination

lovelybutterfly profile image
lovelybutterfly

Glad that you have found a perfect dose for you! But I hope you consult a doctor about it. I think natural supplements would be good also but I'm happy you are doing well now. Bless you!

Baggywrinkles profile image
Baggywrinkles

Hidden, what country do you live in? It looks like UK? I have intermittent RLS, but have had no help at all with it. My GP knows nothing about it. When it occurs, I get up and walk around. Seems to help! But I would love to know causes and possible aids to alleviate it. It affects my whole family life and friends don’t understand at all! I read somewhere that it is taken a lot

More seriously in France but that in the UK, it is not taken very seriously. I daren’t go to the cinema or theatre in case I have to get up and walk about. Do painkillers generally help?

Thank you for any advice or comments.

Kaarina profile image
KaarinaAdministrator in reply to Baggywrinkles

Hi Baggywrinkles.

You will not receive a response from Hidden as they have left our community and HU.

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