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Restless Legs Syndrome
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Powerless

I have great sympathy for anyone suffereing form RLS/Limb Movement Disorder.

It's left me currently with a great sense of powerlessness to do anything about it.

I'm a great believer in promoting "self-efficacy", simply put, a person's perception of how effective they can be in managing their own health issues. When it's been a matter of dealing with cancer for the last 8 years, I can say that despite often feeling very alone in having ro deal with it, I have dealt with it.

I wish I could say the same for RLS.

I have had RLS/PLMD for at least 30 years. My (first) wife told me I used to kick her in my sleep, which I wasn't aware of, Sometimes I'd get mild sensations in my legs. That was early 1990's

I saw a neurologist about 10-12 years ago because by then the sensations and leg kicking were preventing me getting to sleep. Not good when you have to set off driving the 54 miles to work at 6am.

I was given a choice by the GP. I could be referred to a neurolgist who was renowned for his lack of communication skills ( a polite version of what I was told) and wait 3 months. Alternatively, I could be referred to someone else, but have to wait 6 or more months. There was nothing said about the clincial competence of either, so I chose the 3 month neurolgist.

He confirmed RLS and pescribed Pramipexole.

Wonderful - sleep, no sensations or movement on night one!

The years rolled by and retirement came and inability to get to sleep returned. Saw another neurolgist (pleasant chap) who prescribed Clonazepam for a month. Clonazepam is of the Temazepam, Valium, Lorazepam family and more normally used as an anti-epileptic medication. It sort of worked. Highly addictive, leave you drowsy during the day and only works fior a limited time, so not really recommended.

That was about 8 years ago and I have used Clonazepam a couple of times, but for no longer than a week.

As I've now learned I should have expected Augmentation crept in over the years. I never really fekt too bad about this because I am vefry active during the day and never really stay still that long.

An MRI in March 2017 revealed a compressed nerve in my spine and for the nerve pain caused by this, my GP prescribed Amitriptyline. Thus, as well as being difficult to remember how to spell, I only later learned, is not recommended for anyione with RLS.

More recently in August 2018, the nerve pain got signficantly worse and I couldn't stand or walk for more than 30 seconds without almost unberable pain. A two month course of Naproxen (NSAID) supplemented with Codeine Phosphate and replacement oif the Ami - ine with Gabapentin, got the pain under control. I didn;t take the codeine much, I'm not too happy about the consequences of using opiates.

Incidentally, Naproxen causes water retention and my blood pressure went up. When I stopped it my kidneys were so relieved at working properly again they went a bit to far and i actually wet the bed one night!

Ir was only then that I found out Ami - ine isn't good for RLS, and Gabapentin helps it.

To the point and current situation. Since about November last year I have been getting no more than 3 1/ to 4 hours sleep a night and quality of life getting wirse as sleep deprivation building up and I'me aware of all the consequences of sleep deprivation e,g, including stroke.

The augmentation that didn't use to bother me too much, now does, because although sleepy druing the day and actually falling asleep, I don't fall far enough becasue the leg movements kick in within minutes, (along with the hips, arms, shoulders, neck and abdominal muscles). Anytime of the day. So no catch up naps.

Now I'm taking RLS seriously and have been trying to find out more, which is my way of managing self-efficacy.

It's not working!

What could I do? Options appear to include -

Increasing the Gabapentin - No thanks, horrendous side effects

Splitting the Pranipexole dose morning and night, not just night, I think that will mean I couldn't get to sleep at night, whereas at the moment I can, I just can't sleep long enough.

I have concluded that I primarily need to get off Pramipexole completely. a) because it's causing the augmentation and b) Pramipexcole casues restlessness (insomnia) itself.

But HOW? If you've ever missed a dose you'll know why I ask that.

I contacted Dr Buckfuhrer's organisation and was advised to use opiates to get off the Pramipexole and possibly use opiates long term.

Vist to the GP. - As forewarned, quote " there is no way any GP will prescribe opiates for RLS"

I am very loathe to go the opiate route anyway, but might have been willing, in desperation to give it a go at least to get off the Pramipexole.

Plan B, as suggested by GP and what I was considering anyway, see a neurolgist. Referral under the NHS would mean at least 6 months waiting time. (Apparently the neurologist I saw years ago, still has the same reputation and is still practising).

Go private! This is an expensive option and not one I can easily take in my financial situation. The GP said if I found a neurologist and had a private consultation, the neurolgist could give advise the GP what to prescribe. So I said I'd do that.

On second thoughts - I can't "find" a neurologist. Google has let me down! The only one I can find is the one I saw years ago who remains of ill-repute.

It has occurred to me, that a neurologist is just that and RLS isn't particularly "trendy" so neurolgists aren't particularly knowledgeable about RLS.

So now I feel I'm out of options and am going to have to somehow deal with this on my own.

Has anyone managed to wean themselves off dopamine agonists and without resorting to other equally damaging drugs, how did you do it?

OR, as I now suspect RLS is a completely hopeless case, with no effective treatment and even semi-effective treatments causing their own damage?

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63 Replies
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Hello! Wow, what a mind journey! You write well; I could actually «see» your thoughts.

Question for you: what does «other equally demanding drugs» mean to you? Opiates? All drugs? Just curious.🙂 Unfortunately, I don’t think you’ll find a drug that isn’t without its list of potential side effects and damaging in some way. Please correct me if I’m wrong.

I augmented on Pramipexole and was able to wean off of it without opiates. I was switched to Gabapentin after that. Since ours is a syndrome that demands quick results, I got fed up with how long that was taking to work and was switched to Neupro.

Some have managed to effectively control their RLS through diet and exercise alone.

Thanks Jess. All drugs have their downside I agree. Some, e.g. opiates, have significant issues, which are probably worse than the condition you're using them to treat.

Some don't really go too well with other conditions I have, consequences of age and cancer.

I'm hoping for the best quality of life possible, (never ever going to be as good as it was). Don't want to swap one set of problems simply to find another set.

I've been on Gabapentin since last August and that has it's own problems.

Getting off dopamine agonists is my main aim. I realise it will take time.

Thanks for your thoughts.

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You’re most welcome.😀

Firstly, I’m sorry about your cancer and wish you all the best!

Sceondly, definitely! Opioids can cause huge problems. RLS is torturous enough without worrying about potentially feeling their wrath.

Thirdly, you are right that getting off the Pramipexole will take time. Many of us have successful managed this, though, and so will you!👍

It has been said on here that this can’t be done without opioids.

1. This is just not true, as I can attest to.

2. I can also attest to it not being true that it makes the situation worse if opioids aren’t used.

These two statements might or might not be true for you; everyone has different journeys. You will get through this!

I respect those that choose to use opioids, but find it hard to believe that those who aren’t that person’s doctor (and therefore don’t have that person’s medical history) would recommend them.

Take care,

Thanks again Jess

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Any time.😀

This mean, of course, that no one will converse with me anymore (save for you and maybe some others,) but I can deal with that!😀

Hey Jess, just to stay that I totally agree with you in the sense we are all on our own journey and should only take measures (drugs or otherwise) that feel right for us as individuals. The range of reactions to medical and non-medical interventions described on this site evidences that there is no one size fits all approach. I am lucky that I have never had to go through the torture of augmentation but after only four days on Oxycodone (which I expected to be a miracle for PLMS) I would never take something like that again out of choice. For me it's because I didn't like the effect it had on my mind as I have a huge fear of psychosis (it also gave me insomnia so was pointless taking it and no way was I going to add in some heavy duty benzos).

I think that it's really helpful to the forum that you have a different experience of augmentation to share.

Hey thanks! That makes me feel good.

I’m only trying to warn people of the effects that opioids can have — saying «look guys, these can be dangerous drugs. We shouldn’t be recommending them to others».

Spreading a safety message is my main motivator here and it would be unfortunate for other members to see it as anything else. Making sure that everyone is, not only informed as to their treatment options, but safe in choosing those options is my motivating factor.

In everyone’s defense, I know that they have a strong sense of wanting to help. I get that. But...we need to be careful not to sound as though opioids are best thing out there to treat RLS and that one can’t make it through such-and-such period without them.

My message is that RLS can be dealt with effectively without opioids. Yes, it might not be pretty when it comes to augmentation and withdrawal, but when is augmentation and withdrawal from anything pretty?

All that being said, I am glad that you haven’t had to experience augmentation. If you ever do (God forbid) and you decide to go on opioids, I will respect you for that. But please don’t make that choice lightly and definitely not because those on this site say you need it to in order to get through. You don’t.

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I have to admit that it was from this site that I thought opioids would be the answer as I was desperate for a 'cure' and convinced my consultant to prescribe... but - for me - they weren't. And maybe I should have realised that from my history of side effects that I would get bad effects (rather than benefits) from opiods too. I totally agree it is important that there needs to be balance on this site and we also need to manage people's expectations as it is very easy to think well X worked for Y so I will try it too...and be disappointed. The great thing about this forum is emotional support and being able to hear other's experiences. So keep posting Jess!

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I'm sorry to say that you prove my point very well! I'm sorry you had a bad experience; I hope the withdrawal went okay.

Thank you for agreeing with me! It's a crying shame that other don't feel the same way in regards to not recklessly recommending opioids to others.... I respect freedom of choice, so someone wants to try opioids, let them. But for Heaven's sake don't tell them that's the only thing needed to get them through!! What if someone can't or won't take opioids? Are they doomed? Are they a lost cause?? I sure as hell hope not!

I wonder if anyone would read it if I were to make my own post about this? I mean, this is so important for safety reasons.

(Forgive me for targeting you with my soapbox; I don't mean to target you or anyone in particular. I'm just a little tired off hearing opioids this and opioids that and "ooh, opioids are everything!").

BTW, how do people get prescribed opioids anyway if the recommendation for them is solely from this site? I was talking to my husband about all this and he had just one question for me: if the recommendation for an opioid prescription comes solely from this site and not the person's doctor, how does the person get a prescription for them? Do they talk the doctor into it?

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The recommendation is not soley from this site, Jess. it comes from, for me, decades of dealing with thousands of people with RLS, and was working very closely with the doctor who picked up the research in the 70's, Dr Wayne Hening, may he RIP. I met up with him online and he is the one responsible for getting the RLS research going again.. And, since the beginning of RLS time, opiates have always been in the conversation. That is not info from this group, when I am posting, it is a culmination of years of reading, listening, and empathizing.

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To both, having read the NICE guidance on the use of the Targ-y stuff, it's not very convincing when you weigh up the statistically significant but not wildly marvelllous difference it made and the list of risks, I think I'll look at other ways of getting off the pramipexole. I did actually manage to reduce my dose from 0.75 mg to 0.5 mg last year over a period of 2 months without too much trouble.

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Look through the posts, you will see a LOT of topics discussed.

Thanks for the support Lotte! I still stand by all that I said but man, obviously cleaning the bathroom this morning didn’t provide enough excitement for me.🤣

Off to calm down so I can get to sleep! Didn’t sleep at all 2 nights ago due to symptoms, so hopefully this one will be good.

Every med has issues. Dopamine meds are like withdrawing from cocaine. like we have ALWAYS said, what works for one does not work for the next. In defense of opioids, they have less bad side effects than most of the meds used officially for RLS. MOST experts and long time RLS doctors do have the right to suggest opiates to get off of dopamine meds. What Dr. B was saying is that he and others have found that using a short term opioid to lessen the hell of dopamine withdrawal, is the BEST way. He , of course , would NEVER prescribe them without meeting the patient and going over his or her history.

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The reason opioids came up, is because the original poster mentioned he has augmentation, had gotten advice, it did not pan out with his GP, and how to withdraw from dopamine. Perfectly acceptable topic of conversation. It comes up every day in every group I am in, and that is a lot. So, this is not taboo, and I addressed other things. The RLS Foundation in the US and the UK both have info on opiates and the US Foundation is sending out instructions on how to comment on federal dockets (in the US) regarding pain med laws. So, the Foundations know that for SOME RLSer's with refractory RLS, opoids on topic. As, with dopamine withdrawal. We are not just pulling this out of the sky. :)

Hi and welcome

I think you have summed up what you need to do and that is get off the pramipexole.(I assume you are no longer using the amitriptyline?). Increasing the gabapentin won’t help anyway while you are suffering augmentation.

Coming off pramipexole is very unpleasant as I and many others will vouch. You need to reduce the dose very very slowly. It is possible without an opioid but it makes a bad situation much worse. I used 50mg of Tramadol which helped tremendously and my GP was happy to continue prescribing it for a year but then he suggested I take a break. By this time it had lost its effectiveness anyway and I moved onto Pregabalin as my neurologist had suggested. This has worked very well for the last 6mths - it helps nerve pain too. I take it just at night and the sleep I get more than make up for any side effects.

But you have to remember no drug, apart from an opioid will work until several weeks past your last dose of pramipexole. It needs to be clearly out of your system.

I think you need to go back to your GP armed with the info from Dr B and any academic (pubmed) papers you can find on the use of opioids for RLS. See link below for example-

ncbi.nlm.nih.gov/pmc/articl...

mayoclinicproceedings.org/a...

sciencedirect.com/science/a...

Educate yourself, you cannot rely on your GP or neurologist having the answer, and DO NOT let them prescribe you another dopamine drug.

Good luck and let us know how you get on.

Pam

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Thanks Pam, you're right I'm going for the slow withdrawal plan. Going to get some very sharp blades!

I agree about the Gabapentin and don't want to increase the dose.

Yes, went to GP armed with journal articles, same response. No UK GP is going to prescribe opiates for RLS, although I believe oxycodone and and methadone are licensed here for RLS.

Agree, you're right, it is down to my own efforts and self-education, as it was largely for my cancer.

At least one GP now knows what augmentation means.

Thanks for your words.

Wish me luck!

I do wish you luck and my UK GP prescribed Tramadol. If your GP won’t listen then try another. Many people on this forum are in the UK and are taking opioids. Please don’t give up because of the ignorance of one doctor.

And you may be pleasantly surprised that once off the pramipexole your RLS will become much more manageable.

We will be thinking of you, you’ve had to cope with a lot health wise so one doctors opinion shouldn’t stop you fighting 😊

Pam

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Thanks for your encouragement :-)

Methadone is not licensed in the UK for RLS

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You’ve really had a tough time Minerva.

I think the only reason you should see a neurologist is to get opioids. They won’t tell you anything you can’t find out on here.

In the UK, NICE have specifically licensed Targinact for RLS. Targinact is OxyContin and a dose of Naloxone to prevent constipation.

Print off the NICE guidelines and show to your GP and demand opioids.

You are clearly in full blown Augmentation as the RLS has moved to other body parts and is almost constant.

Gabapentin won’t help at all until you’re off pramipexole.

I wish I could tell you it is easy to withdraw from pramipexole. Sadly, for the vast majority it is very difficult BUT it can be done.

Every single day someone goes through Augmentation and decides to withdraw and, although agonising for most, it is possible.

Once off pramipexole your RLS should settle to how it was before dopamine agonists ( allowing for inevitable progression of the disease).

Reduce slowly, by 10% every 7 -10 days. You’ll need OxyContin or tramadol to get through this stage and your RLS will rage during this time.

Don’t give up- your life will be so much better off pramipexole.

Read all articles on Augmentation and print off the NICE guidelines to show your GP.

My GP prescribed tramadol to help me through withdrawal once I had shown her all the evidence that opioids are needed.

I now take 25mg of OxyContin over 24 hours and up to 150mg of Pregabalin at night. Pregabalin is a good option once through withdrawal but it will take weeks/ months for withdrawal symptoms to settle down and to find the right combination of meds for you.

Keep us updated on your progress.

nice.org.uk/advice/esnm67/r...

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Thanks Jools, some great advice. That's really helpful.

Also a bit daunting.

I'm aware that even if I get off the Pramipexole, I'll only be back to where I was before I started on it, which in some respects was worse than where I am now.

So it's no fun in any direction.

Will certainly look at NICE guidelines, although I find medics prescribing habits are more influenced by local prescribing restrictions, practice and costs than by NICE.

We'll see.

PS perhaps just a typo. Minerva was a woman, I'm MANerva.

Tee hee

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Excellent advice as always Jools x

Oh and get your serum ferritin checked with blood test. It needs to be above 100, preferably 200 for RLS. ‘Normal ‘ is anything over 15 but we need it much higher. Raising ferritin also helps withdrawal symptoms.

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I thought it might be helpful to add in from my experience that in the UK just because a drug can be prescribed according to NICE guidelines for RLS this does not mean that GPs can prescribe it. This is because the local clinical commissioning groups set prescribing criteria and, for financial or other reasons, may require patients to go through a number of hoops and get prior approval before a particular drug can be prescribed.

I may well be in a particularly badly funded area, but due to CCG criteriaI have been refused a referral to a specialist or treatment for chronic fatigue syndrome, my GP has been unable to prescribe melatonin or targinact even though the consultant had prescribed it previously (but hadn't got CCG approval), and the consultant could only prescribe neupro after I have tried and failed ropinirole even though she thought neupro was better for me.

So I am afraid it is not as easy as demanding any drug from your GP. Even if they agree, they may be physically prevented from producing the prescription by the computer system or the pharmacy may refuse to issue it.

There is also the issue of competency. A GP would not be acting ethically if they prescribed something a patient asked for without knowing enough about the condition, proposed treatment, risks and benefits etc.

Thanks TATTiana, I have had some involvenent with my local CCG and their long list of blacklsted medications, some obviously of little therapeutic vakue, but some barred based on very flimsy evidence.

Often this is despite NICE guidance and the main factors in their choices of "prescribable" medications is largely based on cost and prevalence. If not many people have a particular problem requiring a particular medication, then it's not given a high value,

I know your story very well, Manerva - it is similar to my own in many details. Chronic sleep deprivation to the point of suicide, no quality of life, despair, and a sense of utter powerlessness. And too many drugs that did nothing except further harms.

I have had the condition since I was a child, and I am now in my mid-seventies.

When I hit rock-bottom, like you, I picked myself up off the floor and went on a years-long hunt for the science. It was hard, but I understood that I had to take back my power. Slowly I gathered together all the pertinent evidence-based research papers I could find, as well as anecdotal evidence from several sources. I studied to the best of my non-scientist ability, often in the middle of the night when I could not sleep, and kept reading until I had a good grasp of the science

I joined the RLS Foundation, where access to the latest papers is documented, and where the finest specialists give talks.

I put together two very fat files and took them to my doctor. He could not deny what he read, because it came from his peers. In the end he was grateful, as he had the knowledge to relieve the suffering of other patients as well as me.

Long story short, I now take only methadone. I sleep, I have a life, and I have no symptoms at all. I got there, but it took a long time. Once I was on the right track I refused to give up.

This is a DIY condition, because doctors are untrained in this, except for the information they get from drug reps - which is extremely slanted.

Find a doctor who will listen - this will probably not be your average neurologist.

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Thanks Parminter. Opinion on this site seems quite polarised, pro-opiates and anti-opiates. I'm glad you found a solution that works for you.

I'm thinking that there is no single or ideal solution to this. It's a matter of each person finding their own balance in terms of quality of life. It's also a matter of accepting what's possible and what isn't. I believe, for example that methadone is not licensed for RLS in the UK.

Certainly, it seems a lot more research needs to go into what the actual neurological pathology underlying RLS is.

Most of the literature I've come across focusses on what you must excuse me for calling "simple" RLS. E.g. The NICE guidance on the use of Oxycodone + Naloxone describes RLS as unpleasant sensations and an urge to move. My main problem is not an urge to move it's entirely involuntary movement, I can't stop it. no mention of this by NICE! I assume this is PLMD. I read that often these two come together but are due to two separate but related neurological processes. That's why both Dopamine agonists and alpha ligands can both be used for treatment. Apparently one works mainly on the "urge to move" and the other on actual involuntary movement. (E.g. Gabapentin an anti-epileptic drug). Ideally when the mechanisms are really understood tailor made treatment(s) can be developed.

For me, I don't necessarily wish to be symptom free if it "costs" too much in other ways. I just want symptoms to be manageable. I can manage with the involuntary movements as long as I can sleep at night. In some respects I consider the movements to be free effortless exercise! You can buy machines that stimulate your muscles like that rather than making effort to exercise.

I suppose that's why, despite having augmentation for years, I haven't sought any help with it.

That doesn't mean I'm going to use sleeping pills because, like opiates, they're addictive. When you look at what that means, part of what it means is that as times passes you need to increase the dose to get the same effect. Consequently you get escalation of the side effects.

I conclude there's no one treatment for RLS or PLMD that's going to work long term. For instance, the NICE guidance identified no evidence on the use of opiates for over 12 months

Living with RLS is akin to living with cancer, a series of calm spells and crises for which you have to develop resilience by learning a variety of strategies.

I believe ultimately, "health" means different things to different people and is influenced by many factors, some individual and some cultural.

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Insomnia is the nasty co-equal twin of dyskinesia in RLS. Benzodoazepines will not work at all for many of us.

Insomnia is also one of the chief neurological side-effects of dopamine agonists. Not for all, but most certainly for me.

So, until the DAs are gone, sleep may be impossible.

I switched overnight from dopamine agonists and benzodiazepines to a low dose of methadone. The dose has become lower, more than halved, and now I take 6mg.

I had expected it would be a nightmare. It was not. But it would have been a nightmare without methadone.

Methadone is known as the one opioid that does not cause euphoria, so there is not much to become addicted to. The specialists who understand opioids and RLS write that the likelihood of addiction is very small, and that the dose may stay the same for ten years or more, perhaps for a lifetime.

And it's cheap. No big companies with patents, no fancy boxes, no marketing.

My health has improved in every possible way, both mental and physical. I feel that I have reached decades back to a point in my life where medication was entirely unnecessary.

I am not preaching or prescribing, simply stating my experience of a drug which, when I first read of it several years ago in the RLS Foundation chat room, truly horrified me. I was utterly wrong.

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I am for anything that works. I am in the US, so I have more choices, and GP's WILL prescribe opioids for RLS, after you have exhuasted all other meds to try. But, people need to learn that taking a low dose opioid is helpful to a LOT of people. I have been managing RLS groups on and off the internet since 1996, and I know thousands who treat RLS with opioids when nothing else would work. In the end, we have to fight for what we know is right for US personally. I said before I would not be here if not for opioids. LITERALLY, I would not be here, my RLS is so severe. I did almost "off" myself, until LOW dose opioid came into the picture. There were a couple of dopamine meds that they removed from the market, because it was found they caused hardening of the heart wall. That was Peroglide/Permax. That was an ergot derived dopamine med, pramipexole and ropinerole are NOT.

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You are correct if you have no urge to move you do not have RLS

please research magnesium deficiency and symptoms of magnesium deficiency also benefits of vitamin d3 and k2 Mk 7 also reduce fat intake. and research foods that cleanse your liver celery juice good luck

Thanks Robert

Hi,

I know how you feel and what you're going through. I told my GPabout my RLS or in my case it's RESTLESS TOES, and that's just as or more irritating than RLS. Finally I convinced my GPthat I really did have this and he prescribed Ropinirole to take before going to bed .As long as I take before my toes start jumping ,I can get to sleep ,BUT if I forget to take until my toes start having irritating feeling,then I can't go to sleep until the Ropinrole kicks in. I told my GP I was having the RESTLESS TOES during the day and he gave me a lower dose of Ropinirole to take during the day.

After reading some of the comments on this site,I started combining gabapentin and Tamadol and this combination seems to be working, because since I've been doing this,I've been able to get a good night's sleep.You may want to ask your GP about taking gabapentin and Tramadol together before you go to bed ,it helps me,but I still take my Ropinirole ,too.

I hope this helps you to be able to find a medicine that will help you to get a good night's sleep.

Good luck!

Annelle

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Hi Annelle, I'm glad that combination works for you.

Thank you!

I totally agree that people on this forum should not insist that a certain medicine should be taken.It's fine to suggest something ,but then they should let that person decide if they want to try it or not.

I would suggest that people can except their suggestions, then decide if that's what they want to take.The best thing I could suggest is maybe try what they suggest, and if it helps GREAT, but they should never make the other person feel like that's the only thing to take that's pure RUBBISH !

I tried the combination of gabapentin and Tramadol and it worked for me ,but it may not work for everyone. If a person is in doubt as to what to take they need to ask their GP, and if that GP isn't helpful then get a second opinion, until you find a GP that is willing to listen to you and one that's knowable about what you're dealing with .

GOOD LUCK AND GOD BLESS !!

Annelle in Texas USA

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Bravo! It is most unfortunate that I feel «punished» (ignored) by those on this site when all I was trying to do was rightly warn people about the dangers of opioids and warn others not to «insist» that opioids are the One and Only needed for RLS. The way I have been treated (or should I say ignored) for trying to help has been nothing short of disgraceful! I’ve been an active member of this community for about 3 years, have both given and received amazing support, and have been appreciated. Apparently, all that left as soon as I spoke up against the opioid kick people seem to have here.

You know what I told my husband tonight? I said, «I learned a valuable lesson today and that is not to mess with ....» (I will modify the last part so as to not offend anyone on here) those so deep into opioid usage that they are either unwilling or unable to listen to reason.

I am thinking of leaving this site because of not being communicated with anymore. Doing this will be a crying shame for both me and (I would like to think) those I have helped.

If being punished for trying to spread what should be the first priority (safety) is a «thing» here, I want no part of it. How incredibly sad!

Jess, sorry to hear this. The more "suggestions" I get on this site to use Methodone, the less likely I am ever to use it. I much prefer posts which offer sympathetic understanding like yours rather than people trying to push what they might find acceptable on me, which I might not.

I assume that people might be trying to help, but generally speaking I react better to empathy than I do to (however well meant) advice. I'm not totally ignorant and need to be empowered to find my own solutions.

I have found your posts helpful.

Thank you! That makes me feel good. I haven't yet decided what to do about this (leaving or not). I've had my misgivings about this group for awhile now; I just haven't had the courage to speak up about them 'til now. I react better to empathy as well; empathy and non-medical suggestions like the ones I give are the only things that should be going on in a support group.

I'm sure that some newcomers/first time posters are surprised to find that they get medical advice when they are looking for empathy alone. Also, I'm sure that some are very surprised to hear of treatments involving opioids being "pushed" on them. Apparently, freedom of choice isn't respected around here. I strongly believe that the only one to give medical advice is the one who knows the patient's history and that is their doctor. For on here, suggestions for names of meds. is fine, but that's it.

I don't remember my withdrawal from Pramipexole being all that bad; it was the augmentation that was Hell on Earth. I think in one of the other threads I said that withdrawing was the hardest thing I've ever done. It might've been; I don't remember (the torture of my multi-moth augmentation period trumps everything for me right now). I hope your withdrawal will be as smooth as possible. If you want my list of remedies (non-medical, I promise :) ), I'd be more than happy to share them with you.

Take care,

Hi again. It's not as if I've not been on these forums before. I've been on and left several times. That's not just the RLS forum. I've come across people who give medical advice and even someone who claimed to know better than doctors. In some respects maybe he did, but as you know, you can't say what's best for an individual without knowing all their circumstances and without respecting their personal preferences. Certainly, I don't think anyone should advise you AGAINST a doctors advice as some do.

I'm afraid I'm not able to resist speaking up and once got barred from a forum, perhaps because of the way I wrote more than what I wrote.

I told myself I wouldn't come on again but felt hopeless the other morning and felt the need to share it. I think that's the real value of these forums.

It would be a shame then, if someone like yourself does leave the forum. It is your choice though.

yes I'd be grateful to have your list of remedies.

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I actually didn’t know that since this is my first forum. I’ll get my list together when I can; I’m on my way out the door soon,

Thanks Jess. No rush, but as soon as you send it, I'm leaving this site.

Sorry for the delay.

This is my list. My general experience («general» as in «works some of the time») is in parentheses.

-knee high compression stockings (the tightness these provide help calm my movements)

-hand-held heated massager (works well in calming my legs)

-I have a jet spray option on my shower head that I put right up to every inch of my legs (works well and feels really good)

-rubber massage ball with rubber spikes (does great at soothing knots)

-Lidocaine Plus pain relieving liquid. This is a roll-on designed to desensitize the nerves ( works quite well)

-«Relaxing Leg Cream» by Magnilife. This can be bought at Walgreens (if in States) or on Amazon. (Gives a soothing feeling when massaged in. I have to generously apply this if I am to feel my legs calm down)

-Magnesium Oil. (This does wonders for pain and has the added benefit of calming the legs)

-Soaking in warm water ( I swear I can feel the blood start to flow again!)

-3 exercises in particular found halfway down this site:

healthline.com/health/restl...

(I love these!)

-type «Rife Frequencies RLS» into Youtube, put your earphones on, and enjoy (or try). These are like binaural beats, so they aren’t the prettiest sounds, but I swear I have some success with my legs calming down! There is a science behind Rife Frequencies that says that different bodily afflictions respond to different music frequencies. This is why you need to find the RLS-specific ones.

Good luck to you.

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Thanks Jess, great stuff! I hadn't thought especially about the Rife frequencies. I know that different parts of our body/mind resonate at different frequencies. I experimented with that when I was younger.I

Chakras, meridians etc

Legs are only one of my problems, the "urge to move" sensations in my legs (which is what I understand RLS to mean) are only a precursor to sometimes quite violent myoclonic movements, sometimes painful spasms in legs, shoulders, arms, wrist and torso. Good O'l augmentation.

I hope you don't think I'm being facetious and are as amused as I am at the image of me covered head to toe in cream and a body stocking :-)

But, seriously thanks a lot.

That is disrespectful. Since you are being honest, so will I, which I always am, Jess. We give lots of empathy around here. But, when people ask "What works best for you/" we ARE going to tell them. And, it is always implied to talk to your doctor first, etc. People are desperate and we are desperate to try and help. I think if you have a problem with this forum. you should write to Kaarina, she is the administrator.

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No one on here should EVER say "TAKE THIS". And, anything we suggest is that, a suggestion. Of COURSE, the person needs to make up their own mind and talk to their doctor. That should be implied. I tell people to check with their doctor, for GOOD reason, if they want to start taking iron or magnesium.

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Thanks for the comment, which is fair enough. I wasn't actually talking about this RLS forum though and I think you may be over-reacting a bit.

I'm not very good with dealing with this kind of reaction. My problem I suppose. I thought I was just supporting someone who was expressing that they were feeling ostracised.

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Hi There, 5mg methadone might save your life.

It has mine. Good luck.

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Hi! I relate to most all of your journey except for the cancer. I’m so sorry. I don’t know where you live but if you are in the United States (I live in Texas) I have seen and am currently a patient of a neurologist in Houston who specializes in movement disorders, including RLS. You can Google him. His name is Dr. William Ondo. In my initial office visit he spent almost an hour discussing my concerns with me. He is very personable, knowledgeable, and has published reputable articles about RLS. He is on the cutting edge of all available treatments to help his RLS patients and I feel fortunate to have found him. From this forum I learned about iron levels needing to be higher for RLS patients. Dr. Ondo routinely recommends the blood tests to check ferritin levels and he also prescribes iron infusions if iron levels indicate a need. Like you, I had a dependency on Pramipexole. After living with augmentation and then going through the hell of withdrawal, I will ever consent to another dopamine agonist drug. We all know there is currently no cure for this devil of a disorder and all we can do is try to manage it. But at least I now know that there is hope for the future. You would do well to check Dr. Ondo out. Blessings to you as you continue to seek relief. Please know you are not alone!!

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Hi Lolly, dr Ondo is one of the most reputable and experienced RLS researchers. Fortunately for you and his other patients, he is also still running a practice. Enjoy! Although, I wish you didn’t need to see him....

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Yes, this Dr Ondo is on the US, and he has co-written research papers, and Clinical Management of RLS, 2nd edition with Dr. Buchfuhrer and 2 other doctors and a registered nurse does the section on"Children and RLS". But, they lay out the algorithms for treatment, from mild to extreme. RLS can be described so many ways. :) And these algorithms are approved by over 100 doctors and researchers, and were presented at a seminar on RLS with the Medical Advisory board. :)

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Thanks for the reference Lolly. However, I love in the UK. There doesn't seem to be any RLS specialists here.

That's Live in the UK,

February 9, 2019 Manerva: Try acupuncture, massage therapy or acupuncture or even relaxis pad since pharmacology is not helping. I have been eating a bag of celery daily with some positive results. I am going to get therapeutic yoga to learn exercises which might help with RLS. Other than spending the money can't hurt. I have been there too. Meds have many problems. I am also using, against advise, using quinine tablets I purchased from Canada. Also try tonic water. This is not without side effects - like tinnitus. However, I am willing to put up with that.

FYI. all products containing Quinine have been pulled from the shelves in the USA. Soon to follow in the UK in the next year or 2. Quinine also affects the heart, and was deemed dangerous because it sparked changes in how the heart works, and they attribute 5 deaths to it directly. This again makes my point that if something sounds safe and easy, one still has to one's homework and talk to your doctor. The only thing Quinine is used for in the US is for treatment of malaria, so hardly at all. :)

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Manerva: An acupuncture or massage therapy school will charge you less. Check out schools to see if students can practice on you. Way to save money.

Thank you everybody for all the advice and suggestions. It's good to know that others can identify with my experience and have found solutions that work for them. That alone has helped me feel less powerless.

I will, I believe find a way through my current situation. The main thing I'm aiming for is to stop the Pramipexole. I'll find a way of doing that.

It appears that opiates are the most popular solution, and some recommend Methadone. I really don't think it's possible for me to get methadone legally in the UK. Oxycodone IS licensed here for RLS, but my personal choice is NOT to go down that route.

Thanks for your concern.

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We will and should respect you for that! I am so sorry for mostly getting «opioid» responses when you clearly stated your wish not to take them.

My hat off to you, sir, and all the best!!

You will find there are a lot of people from the UK and just as many from the US. So tht kind of mixes things up sometimes. ;)

Good luck getting off the dopamine meds, I really mean it. It can be easier for some people rather than others.. I HAVE to say that short tern use of opioids IS the usual way to do it now. That is not to say that is for EVERYONE. :) DAWS or Dopamine Withdrawal Syndrome is a REAL thing, and it is likened to withdrawing from cocaine. Just fair warning. And, I must address you statement that "no GP will prescribe opioids for RLS". That is not correct, not by a mile. I am in the US. Dr. Buchfuhrer is still in business because HE is one of the best when it comes to RLS. You did not like what he said, and that is your choice. BUT, he is one the best known Dr's ,among others, for RLS. He is deep into research. For example, there is a doctor named Dr. Earley at johns Hopkins in the US, and he did an 18 month study on treating RLS with opioids and it was largely positive, and he has helped many people. If opioids are not for you, that is your choice, for sure. BUT, I am here to tell you that I would NOT be here without the help of opiates. I am 2 time cancer survivor, broke my back at the age of 14 and have had RLS for 50 yrs. I have tried EVERY med on and off the list. NOTHING worked for me, or the side effects were too much. For example, I cannot touch the dopamine meds, they made me violently ill. Gabapentin- gained 50 lbs and the brain fog was unescapeable. So, in RLS, we all know one size does not fit all.

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I forgot to comment on the title of your post. RLS can surely make us feel powerless. Some days the fact that I have been studying and researching, and have communicated with thousands, makes me really annoyed that some of the same issues we discussed 28 years ago, we still discuss today. BUT, we have a lot more knowledge than just 2 web sites in the beginning. lol We were LOST. But, now we have big groups like this and others, and you get a zillion ideas from so many people. "As long as it works" and is legal. :) So, I do really wish you good luck, augmentation is horrible. I hope the withdrawal is not too bad for you. I have seen ALL levels of withdrawals. Let us know how it is going.

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When you say "kicking" and "sensations", does that mean you feel the urge to move? Forgive me, but your post is detailed, which is good, I am rereading it. :)

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