Condition causing overall body rls symptoms.

[Birdyman]

Anyone know a name(s) for this type condition?

Neurologist diagnosed me with it as well as legs rls but I cannot recall the name he gave it.

[Madlegs1]

Augmentation?

[Birdyman in reply to Madlegs1]

Hi there- as I understand augmentation it means a worsening of symptoms caused by the drug that was supposed to help them. But that’s not exactly what’s going on ( please see my reply to Minerva).

I will get back soon.

[Hidden]

Madlegs is probably right. It's not actually a different condition to RLS.

"Augmentation" is a worsening of RLS symptoms where they spread from the legs to other parts of the body, are more intense, happen in the day not just at night and happen more quickly.

Hopefully the neurologist also told you that augmentation usually happens as a consequence of taking a dopaminergic drug for Parkinsons disease or RLS. Especially, L Dopa, but also the "dopamine agonists" used for RLS, pramipexole, ropinirole or rotigotine can cause augmentation.

Hopefully also, the neurologist told you that the best solution for dealing with augmentation is to stop taking the dopamine agonist if you are taking one.

Some doctors suggest switching to a slow release dopamine agonist such as Neupro (slow release rotigotine patches). However, if you've already augmented on one dopamine agonist you're just as likely to augment on another.

There are alternatives to dopamine agonists.

Here is a link to further information about augmentation

rls-uk.org/augmentation-reb...

Just to warn you, if it's relevant and you might consider stopping taking a dopamine agonist, it is dangerous to do it suddenly, you need further advice.

I hope this answers your question.

[Birdyman in reply to Hidden]

The neurologist did not blame augmentation although he did decrease my ropinerole, explaining that it can help rls but not my main problem. Furthermore, he really did name my condition and I will try to get that name.

There are several points about how my “condition “ differs from rls, the main one being that rls, by definition, is confined to the legs. It does not “spread”. Not to be argumentative but he was quite adamant about this.

Another point is that rls always responds to narco drugs but mine does not. I just get stoned and I am still squirming and fidgeting all over. I will be very sleepy , yawning with watery eyes but still very agitated. It’s a strange feeling.

Thanks for your interest and I look forward to chatting with you guys.

[Birdyman in reply to Birdyman]

Hi all

Contacted neurologist and actual name for this whole body rls-type feeling is akathisia.

However, the definition says it’s most often caused by older antipsychotic drugs, which I have not been taking. But I did take some many, many years ago and I have been suffering most of my adult life.

Does that fit in? I am confused now. But akathisia absolutely fits me otherwise.

Anybody hear of this or maybe I just need a bunch more drugs? 😻

[Hidden in reply to Birdyman]

Sorry for presuming you were suffering RLS augmentation..

Since this is a site for RLS sufferers, I was presuming you suffered from either RLS or the associated condition of Periodic Limb Movement Disorder.

As for RLS NOT spreading to other parts of the body, you are incorrect. RLS can and does spread to other parts of the body and when it does then it's known as augmentation.

Many RLS sufferers, like myself, have experienced augmentation as a result of taking a dopamine agonist. Hence, like myself they have experienced RLS symptoms in other parts of the body.

The treatment for both RLS and PLMD are more or less the same, e.g. dopamine agonists like Ropinirole. Additionally the accepted way of dealing with augmentation, for someone taking ropinirole, is to reduce it. Which is what your neurologist did.

If you read the pinned posts about augmentation on this site then you can find out more about RLS augmentation.

The treatment you're on, ropinirole is used fro RLS/PLMD. An opiate can also usually be effective for RLS/PLMD. Augmentation is relieved by reducing ropinirole. It all sounds like you have RLS augmentation.

If as you say, this doesn't apply to you, since the only clues you give are "this type of condition" , mention legs and posting your question on this RLS site, I imagine most readers will make the same mistake as I've made.

Since you now say it's not RLS, I haven't a clue what you're writing about and can't answer your question.

[Birdyman in reply to Hidden]

My original post states that the neurologist said I have rls in my legs. I never stated that I do not have it, only that the overall body torment is from akathisia, not a spreading of rls.

I don’t know if you are a dr but mine has been practicing 38 years and has a good reputation.

Also, augmentation is caused by the drug you are taking no longer performing as it should and I had this “condition “ many years before taking ropinerole.

But my question stems from the fact that I have not been taking the type of drugs that can directly cause akathisia. So my real question is “huh?” because I am just not getting it.

Sorry I bothered or argued with you but I am just repeating what a well respected neurologist said about rls and about akathisia.

[Hidden in reply to Birdyman]

Thanks for the clarification, I haven't seen any original post, in fact I can't find any other post from you, only the one above and my comments were based on that alone. I agree it doesn't say you don't have RLS, but then it doesn't say you have either. Hence my defensiveness.

If by "original post" you mean your profile, I usually only read people's posts, not their profiles. This is probably a feature of this site you are as yet unfamiliar with.

I don't wish to undermine your confidence in your neurologist, but the fact remains that RLS can spread to other parts of the body, often as a result of augmentation.

Augmentation is as you will see described in the pinned posts on this site. It is not just simple loss of efficacy.

Akathisia, I see, can be caused by a variety of drugs and part of the treatment may be to reduce or stop the drug causing it. Some of the drugs that can cause it can also make RLS worse e.g. SSRI antidepressants.

If you're not taking any of the drugs that can cause akathisia, then it seems unlikely you'll actually have it.

Akathisia can be a differential diagnosis for RLS and vice versa. The two have some symptoms in common. One can be confused for the other.

The drug treatment for akathisia appears to be different to the treatment for RLS in some respects and from what you say (in this post) it seems that you aren't prescribed anything for akathisia unless there is something you haven't mentioned.

I guess you know that Ropinirole is the treatment for RLS, not akathisia. So if you are confused I can see why.

Perhaps you need to ask.your neurologist directly, do you have akathisia or do you just have RLS or do you have both. If you DO have akathisia then why isn't it being treated?

It also follows that if you aren't taking any drug that causes akathisia and you don't have akathisia at all then it seems you're suffering augmentation. In which case reducing or even stopping.the ropinirole would be a way of dealing with it.

[Mum007 in reply to Hidden]

I have restless arms and am not augmenting as I have never had medication so you can have this as well as the legs.

[Hidden in reply to Mum007]

I believe some people can have RLS in parts other than the legs without augmentation. Which further reinforces the point, RLS isn't confined to the legs.

[Joolsg]

Hi Birdyman.

What drugs are you taking and what dose? I see you mention Ropinirole and that you have reduced the dose on the advice of your doctor.

Your doctor is absolutely incorrect. RLS can DEFINITELY affect other body parts, especially when dopamine agonists have caused Augmentation.

The all over body sensations you are experiencing could be something else or they could be severe all over body RLS or they could be augmentation.

A lot of meds can cause RLS in some people, like most anti depressants, anti histamines and cough meds.

[Birdyman in reply to Joolsg]

Please forgive me for being direct but are you a doctor?

[Hidden in reply to Birdyman]

I have all over RLS and have at times wondered was it some form of Akathisia although I don't/haven't taken any drugs known to cause Akathisia.

Birdyman, you mentioned some of drugs years ago but have you taken any lately? If not then its unlikely you have Akathisia. I've never taken any drugs that cause Akathisia however I have had a worsening of RLS symptoms which included a spell of augmentation. Now I have RLS in my legs, torso and arms at times. It would be nice if it were akathisia as a bit of Kemadrin would take care of it for me.

I have been told by two Drs that this is caused by RLS! Maybe in a few years with better knowledge it might be something else! We don't need to get defensive and and overly protective of our Drs - they are only humans and fallible ones at that. Read some of the stories here and you will see awful, truly awful Dr practices that go on.

[Joolsg in reply to Birdyman]

No - why? However, like many on this site, I have read most of the medical textbooks on RLS, most of the research papers and I keep in touch with one of the world experts on RLS, Dr Mark Buchfuhrer.

I understand that you respect your doctor of many years but, he is wrong. Look up the work of most RLS experts and also look up which body parts are affected by RLS and you will see that RLS DOES affect other body parts.

Most people join this site because they have been badly let down by their GPs and neurologists who know very little about RLS.

There are a few RLS experts in each country- the RLS foundation in the USA keeps a list of doctors in each US state and we know of 3 or 4 good neurologists in the UK.

Please understand that we all try to help each other on this site - it is different from most medical information sites because a great many contributors know more about RLS than most doctors and neurologists. That is not an arrogant statement sadly- it’s fact.

Spend a few hours reading posts and responses and you will see a recurring theme- lack of knowledge amongst doctors about RLS , dopamine agonists, augmentation and how to treat DAWS.

I hope you find this site welcoming and helpful.

Jools

[Hidden in reply to Joolsg]

When it comes to RLS - I will place my care in Joolsg's hands long before any Dr's.

[Birdyman in reply to Joolsg]

Thanks for your attention. I remain somewhat confused because of what I see as incongruous facts. For example, we know that rls responds readily to narco drugs. But I do not (when I have an episode). And if I take more, I feel stoned but still fidgety - same with alcohol.

Also, I ruled out augmentation because, as I said in prev post, I have had this problem most of my adult life - many years before taking ropinerole.

And finally, my problem began as an “overall “ body problem and later seemed to be worse in the legs, hence the rls diagnosis several years ago. The original, overall problem was chalked up to tension from anxiety. And this coco about the time a Dr put me on Thorazine, which as you know, can cause major problems but I was only on it for a while.

I am just giving you my personal info so maybe you will understand where I’m coming from. I don’t have a great deal of faith in doctors but we are living in a time when there are many people with many cures for everything. Late night tv is full of ads touting products that will help, if not cure. My favorite is the one that “guarantees “ weight (fat) loss without dieting or exercise. And people don’t consider why these companies are not the biggest in the world!

I’m not suggesting this site is touting cures but for every erudite individual like yourself there are millions sharing their own theories and “home remedies “ - and lots of websites, too. It doesn’t take much to publish a website and even less to get people to agree and commiserate on their symptoms and other problems.

I do think the online community is well served by this site and I intend to participate when I can. And I appreciate the suggestions you and Minerva posed.

[Joolsg in reply to Birdyman]

I understand your situation. I would just mention that 'narcos' will not help severe augmentation if you are still taking a high dose of dopamine agonist like Ropinirole. I know because when I was in augmentation tramadol didn't really make any difference to my suffering.

However, once I was completely off Ropinirole, oxycontin did stop my RLS.

I think you are in the USA from your spelling of favorite ( here in the UK we do not use the term narcos) and I would be interested to know what dose of Ropinirole you are taking. Some people on this site have been prescribed criminally negligent doses of 20mg which is above the maximum recommended dose for Parkinsons Disease.

Dopamine agonists are used at low dose as a diagnostic tool. If they stop RLS when first taken -a diagnosis of RLS can be made. If Ropinirole stopped your RLS symptoms when you first started taking it, then that would be a very strong indication that you have RLS.

Dopamine agonists work brilliantly for several years before they lose effectiveness. The dose is then usually increased but instead of providing relief the increased dose results in a paradoxical worsening of RLS. The RLS then usually becomes more intense, starts earlier in the day and then spreads to other body parts like the arms, hands and back.

When I was suffering augmentation, it even spread to my face. I am now on opioids and my occasional RLS is less frequent, less intense and affects only my legs.

I would conclude that if Ropinirole worked for your condition initially then you have RLS. If it has stopped working and has caused the RLS to increase in intensity- that would indicate that you are suffering augmentation. That is why I would be interested to know the dose of Ropinirole you are currently taking ( as well as the dose you were taking before your doctor suggested a reduction).

I realise you might be suffering from a completely different condition as you say you have had these sensations in your whole body for many years and before you started Ropinirole.

If you live near one of the specialist RLS clinics ( Baltimore or Redwood California) it would be worthwhile visiting. Dr Mark Buchfuhrer in California is brilliant.

[Birdyman in reply to Joolsg]

You and Manerva were right and I was wrong and my dr was wrong. Rls does “spread” to the body. Needless to say, I have found a new neurologist who is “up” on the latest details of rls. We have not consulted yet but I believe he is a good dr.

But until then I am continuing the ropinerole (now at 6 mg daily) and gabapentin (@ 2400 mg daily). This seems like a heavy dose of gabapentin and sometimes it makes me sleepy but IT WORKS.

Not sure about the ropinerole anymore but I highly recommend large doses of gabapentin. I am not sure of all the side effects but they couldn’t be much worse than overall rls.

So thanks to you and Manerva and others for your advice. I suppose people really can stick together even online.

[Hidden in reply to Birdyman]

You're quite right. It helps to have some degree of healthy skepticism.

You will encounter individuals here who, as you say, ( I also use the word) "tout" products or pet theories which on closer inspection, don't bear any scrutiny. It surprising bow vulnerable, desperate and hence how highly suggestible people can be.

The trick is the ability to discriminate between what's reliable information and what's misinformation, what's useful guidance and what*s misguidance.

Admittedly it's not always easy and we can be swayed by other members of a group and by individuals we believe to have some authority and by our own emotional."investment" in a particular solution.

I hope you begin to see some recurring themes on this site and can recognise fact from fantasy.

[Birdyman in reply to Hidden]

You are right - some people invest in finding solutions emotionally as well as intellectually and consequently sway. But since a certain amount of buying in is really needed, we do need to kibbutz and share.

I have a technical background and have been truly indoctrinated in the sea of “show me it works”. Just yesterday one of my best friends told me he is selling products that make grandiose, but legal, claims. He is not a liar, just foolish and I did not have the heart to argue with him.

Until I know more about all this “stuff” I may be out but I will drop back in.

Take care and wish jools well for me.🤠

[Hidden]

Members of this site, irrespective of their professional background don't provide information on the basis of having a medical background, e.g. being a doctor.

Many members however are "patient experts" and the information they offer is based on personal experience and specific and detailed knowledge of their condition. You will note that the more informed members will be able to back.up what they say by reference to authoritative sources.

One such sources is RLS UK which administers this site.

Unfortunately, this may cause some members some discomfort since it is a quite common experience that many doctors even neurologists are quite ignorant about RLS. GPs don't really have an in depth knowledge of anything, how could they have, they have to deal with everything. Similarly, neurologists have a lot of different conditions to deal with. RLS is a very low priority for them.

You will also see on this site some members referring to internationally recognised RLS experts, who deal with RLS only, not a multitude of conditions. They also commonly do new research into RLS.

It might appear arrogant on the face of it, but I have more trust in what some members, such as Jools, say than some doctors. My GP freely admits to knowing nothing about RLS.

If you find it uncomfortable to accept what a member of this site says because it apparently contradicts what you think a neurologist has told you, this, I understand is unsettling and really awful. The respect given to a neurologist may be well deserved because of their overall knowledge and long.term experience, but this doesn't mean they have knowledge and experience of everything, especially a condition which isn't considered debilitating or life threatening like RLS.

I also believe that members of this site are genuinely, on the whole trying to be helpful with no real interest in actually pretending to be, acting as or criticising any health professional.

I have learned more about RLS from this site that I have from any doctor and of the 3 neurologists I've ever seen, none were RLS specialists, two admitted they weren't sure what to do and one did me mire harm than good.

If you're currently suffering with your symptoms it might benefit you too if you consider what members on this site are saying and read some of the information on the site e.g. the information about augmentation.

Apologies, didnt intend to lecture.

It's your choice.

[Joolsg in reply to Hidden]

I couldn’t have put it better Manerva.

Jools

[Rescuemom]

I get that too, Requip doesnt help at all.

[Grammalu]

My doctor says it is Total Body RLS. About 5% of the people get this. Aren't we lucky?

[ilfordonian]

Hi Birdyman - oh dear, I do feel silly addressing you such - but thereagain I had a patient (in the surgery where I worked) years ago who insisted his name was Scruff. To be able to treat him he had to prove his name which he did - he had changed it by deed poll....and his wife was Happy....No surnames just Scrufff & Happy ! I know, I have digressed - my apologies ! So Birdyman.... you have been told you have Akathisia. I'd never heard of that but, looking at the symptoms recognise them partly in myself but also very much in a long gone relative. I am treated for RLS which affects most of my body as well as MS which gets blamed for other stuff I contend with. I have been taking Ropinirole for about 15 years - prior to that I was given varying meds which dampened but never quite prevented my symptoms. Ropinirole gave me my life back. Prior to Ropinirole I was edging ever closer to finding a permanent solution. As mentioned I have MS - my future is uncertain but, the way I see it, no one's is. My absolute biggest fear though is that Ropinirole stops working for me. I hope you come back and advise if your Dr has a solution for your Akathisia. Take care of yourself and all the best Sx

[Birdyman]

Odd way to post I suppose but here goes. I noticed a post about had a bad night and I need some advice or at least empathy. Last night was my 2nd worst ever. I had body shakes and almost blacked out at one point.

I had my wife to comfort me because the gabapentin was just not quite doing the job ( I think I may have taken it a little too late). I had to use her walker just to get to the bedroom because my body was convulsing so. Without her I don’t want to think what might have happened.

The problem is I am trying to quit ropinerole, which I have taken for years. I am sure augmentation has set in severely. I was taking 12 mg daily and very gradually tapered to 6mg daily. So now I am trying 3mg and this was my third day on 3mg. I was on 6mg for about 2 - 3 weeks.

The gabapentin has worked good at 3.6 g daily but it makes me groggy- not high just sleepy and listless. But that’s a trade off I will take any day.

So other than just complaining, I am looking for some reassurance because, frankly, this incident frightened me. I felt I was just losing control so to speak. Am I crazy or does anyone else experience these feelings?

Thanks for reading.