Why have I never known of RLS-UK before now?

[UpandDownallnight]

Well...having had RLS and Period Limb Movement diagnosed in 2000 (following a chance conversation with a friend/colleague who worked in the sleep study dept of a large teaching hospital) although I certainly had symptoms from childhood, I have had UK hospital/ Consultant input since 2000 and from approx 2005 this has been in the North East of England.

Following sleep studies/recordings/observation the pharmacology based treatment journey started with Sinemet and exactly as Christopher Earley describes in the video on Augmentation within a short while I'd hit a brick wall-near perfect sleep to back to square one within the blink of an eye. Actually, although I say the pharmacology treatment started with Sinemet the first line treatment of choice offered was Diazepam, it was very clear from the start that the RLS was not a passing phase-it would be with me for life.

As a nurse working within addiction services my mind was almost blown apart at the very prospect of being commenced on such a dependency creating medication and I was unequivocal; if that's the only option then I'll stay as I am no matter how awful it it is (at that time) so Sinemet was commenced and at the same time a referral for a 2nd opinion (not my request) at St Thomas' Hospital in London. All well for a month and then it's as though I wasn't taking any medication at all...so back to Outpatients Clinic and Pergolide was commenced at 250mcg at night.

So from around 2000-2005 the Pergolide does the job at night although still real difficulty sitting in the theatre/rail journeys etc

2004 I moved to the North East of England and sought out a clinician to be referred to with specialist knowledge and by and large very supportive and clearly knowledgeable . Over the the following years there were attempts to exchange the Pergolide for something else. Consultant keen to get me off Pergolide, as I understood it due to the peripheral vascular side effects I was developing (hands/feet -hot/cold, Rayneuds type symptoms) So Pramipaxole was tried-no effect whatsoever and Rotigitine patch also tried which, then, was part of a trial-the adhesive in the patch burnt and scarred the skin on my upper arms so that was stopped...back to Pergolide...with the dose having increased to 500mcg at night. The word Augmentation never is mentioned...

My magnesium and iron levels are all ok...

Years go by, nightly Pergolide continues and the symptoms are now encroaching into the early evening, so try splitting the Pergolide dose morning and night-minimal impact

Life rolls on, being a passanger in a car or flights are murderous-I stood / walked up and down the entire flight to Singapore on more than one occasion.

Hospital Appts continue every year or so, discussion are had re swapping to Benzodiazapine (Diazepam) and I repeat the same concerns and anxieties from my 20+yrs of working within addiction services. So Pergolide continues...The words Augmentation still never mentioned. Pergolide goes up to 750mcg.

Then in October 2017 my life turned upside down. Went to collect my usual repeat prescription of Pergolide only to discover the pharmacy had not been able to obtain it-to cut a very very long story short I try 30+ pharmacies within 100mile radius of where I live and eventually discover that it is no longer available. Oh My God...the wheels have well and truly come off

The following 7-8 weeks are hell on earth with just short of 30 hours sleep in that time.

Seen by hospital Consultant, days and nights with no sleep, barely functioning. Commence Rotigitine patch which over a couple of weeks goes from 2mg to 3mg and then a combination of the fact that the patch curls at the edges and doesn't actually stay on for 24 hours and the unremitting leg movements means Gabapentin in added. I now feel as though I am really losing my mind. Leg movements are violent-constant kicking, like I'm doing some sort of martial art, legs are on fire, "shin splint" pains, can't even stand the force of the shower on my feet-it's like having shards of glass thrown at them.

Rotigitine patch and Gabapentin are discontinued then Gabapentin on its own is tried and the higher the dose the more violent and constant the leg movements. I cry all the time, I can barely function. The videos make painful watching

Still the words Augmentation are never mentioned...

Commence Ropinorol at 1mg and that works well for approx 3 months-sleep though the night-still the words Augmentation never mentioned by Hospital Consultant

And then I find this site and there is a Ureka moment. For the first time in almost 20 yrs of treatment the awfulness of this begins to make sense and I can absolutely understand what needs to be done-which is get off Dopamine Agonists-but easier said than done. I need to go to work, I work shifts, it's far less simple than you could ever imagine. And now knowing of Augmentation I still need to be able to function so the Ropinerol goes up to 2mg and all is well for some months and then it begins to unravel again.

My years of experience of working in addictions never prepared me for my own, subjective experiences. I need to get off the Ropinerol but also need the uninterrupted time to do it- I work 0 hours contracts or do some contracted work-either way I have no paid annual leave where I could take 2 weeks and make the changes.

So having read more on here and the Christopher Earley webnair/podcasts re opioids for the past 4 nights I am now taking 30mg Codeine at night as well as the Ropinerol 2mg-sleep almost all night and the leg restlessness in the day is reduced.

Plan:

GP appt next week, am going to request the Ropinerol tablets come in 1mg tablets so I can start reducing so I get off the DA altogether and keep the Codeine going...but what I have no idea of now is what the baseline level of RLS is (once you take Augmentation out of the equation) As a guess it is likely to be where I was back in 2000 because there is no evidence of worsening of the condition (outwith of Augmentation) So I'll aim to come off everything so that I can have some understanding of how bad it actually is and then hopefully treat just with Codeine...it goes against my better judgement re everything I know about opioids BUT...I am now nearer 60 than 50 and the use of Codeine is not ever going to create a situation of Augmentation such as happens with Dopamine Agonists.

And still the Hospital Consultant has never uttered the words Augmentation, nor has ever told me about this organisation-strange that, inspite/despite speaking at the RLS-UK Annual Conference. To say I am saddened and disappointed is an understatement

[Madlegs1]

Welcome!🤗

What a story- and somehow seems so familiar.🤣

There is another website which is medically supervised, which , I think you will find interesting.

rlshelp.org

It has a long set of pages of patients letters and answers by a colleague of Dr Early. You can also email him with specific queries.

Concerning yourself, I would ask whether rls had a start date, or whether you notice if episodes are triggered by something in your lifestyle.

This could be food- such as alcohol, sweeteners- fizzy drinks, energy drinks etc. Everyone seems to have individual sets of triggers. Mine are sweeteners, suphites ( processed meats, beers etc) colourings E123,4,etc.

Some people find success by cutting out carbohydrates and processed food, going vegan, checking serum ferritin levels ( need to be about 100 or more).

I could go on, but will leave you with this for the time being.

Great that you are progressing, and have discovered the great secret of Augmentation.

Low rates of opiate such as Oxycontin (5 or 10) should give good long term relief without concern for addiction, unless you have other addictive issues/ personality.

Safe journey.

[UpandDownallnight in reply to Madlegs1]

I think what I find to be utterly unsettling is that I am under the care/management/ treatment of a UK hospital consultant within the speciality of sleep disorders and not once in 13+ yrs of being under the care of this Consultant has that person mentioned Augmentation nor told me that this very organisation even exists, especially when they are a specialist contributor to the annual UK event and running workshops....

I don't undetstand your question "ask whether RLS had a start date" Ask it of whom? I already know the answer to that- evident since around 10-12yrs old.

As for cutting out this and that and something else..or increasing Iron, magnesium blah blah blah..Of course the inevitable difficulty with all of that, along with the need to do the one thing that absolutly needs to br done is come off the DA, is that making a myriad of other changes means it is impossible to know what, if anything, makes a difference. What I do know is that, like many, I am suffering the iatrogenic consequences of- as Christophet Earley says- "creating a monster"

[Madlegs1 in reply to UpandDownallnight]

I merely make the point about a "start date" is that sometimes people can point to an event which kicked off the rls.

Depressed people often talk about Amytriptolin as starting their episodes. We here ,of course, know well that Amy is a notorious cause of rls. Others might say thay started on an exercise regime, involving boost drinks- which again have an effect on rls. And so on.

Elimination diets are a well used means of discovering triggers- even while struggling with all other things going on.

As for the socalled experts being ignorant of augmentation- we have discovered here that that is quite common.

I can't answer for their not passing on information about rlsuk. You really should take that up with them.

Cheers.

[UpandDownallnight in reply to Madlegs1]

There appears to have been some misunderstanding; I didn't expect you to be able to answer why my UK Hospital Consultant has never mentioned RLS- UK to me and i imagine when I do next have an appt I shall raise it.

And I do understand the general principle of elimination tactics (as well as supplementing) but having lived with this since early adolesence and treated pharmaogically with DA since 2000 and was living with what I belived was a worsening/ deteriorating condition per se, only to discover in the last yr that the worsening and gravity of symptoms is because of DA then that is what I need to address in order to establish what the baseline level of my RLS and PLMD is and then start again in both treating and managing it

Thank You

[Windwalker]

I am sure any one of us could write or identify with you. I have a kind of restlessness that is genetic. My mother and her 8 sisters had about the same thing I have. I has 4 brothers and two others had the same condition I have. I noticed sleepless nights and total restlessness all over. I have taken every drug mentioned in the letter you and others wrote. What has kept me from ending it all is the fear the hell beyond here is worse than the hell I have endured during periods of my teen age years and all my adult life. I had a doctor friend and she noticed my restlessness and said she had a friend who had taken Maripex and she casually wrote a prescription for me. I filled it and went home and for the first time in half a century, slept 8 hrs of uninterupted slumber.. That was the good part. I increased the dosage and within a couple of years was up to 4 mg a day. I was on a high that made me bullet proof. Because I had been restless, I worked a lot and made a small fortune, which I gambled away and went into major debt.Every small obsessive behavior I once had before became a major life problem. i found a neurologist who was also a phycologist, who wrestled me into submission and got me to regain the desciplined life I had before.. I am existing with a lot of muscle pain from all the jumping and jerking and sleeping about 2 hours at a time before I take some opiates and nasids along with Gabapentin. I see a chiropractor who also gives me theroputic massages and sympathy.

I am now 82 years old and have skipped over a lot of suffering and try to forget as much of my past as I can.

Windwalker

[EEW42]

So sorry about your situation and I know exactly how you feel. For I have suffered with Rsl for forty years. In the beginning it was for a few hrs. at night and progressed to anytime I sat or lie down. You are absolutely right, sleep is impossible. On a piticuler long holiday weekend my meds. were destroyed by a pet and the druggest wouldn’t refeel without a doctors order. After 72 hrs of walking the floor I was on the verge of suiside. My wife was finally able to convince the druggest to give me enough to get me by until I could get my prescription refilled and this is only one of meany accurances over the years. I have been on several meds and combinations of them over the years, some worked well for a while then slowly lost their effectiveness. I’m currently on three one and a half milligram mirapex tablets along with one three hundred milligram capsule of Gabapentin per day which I take all four around seven in the evening. Been doing this combo for two years, so far, so good. Another problem I have with this aflxion is my age. I’m 76 and there are times when I forget to take my drugs and once the symptoms start the drugs won’t stop them. I then have to knock myself out with sleeping meds in order for the Rsl drugs to take effect. I fear that my long wended reply won’t be of much help to you and I hope that soon someone will find a permanent fix for this whatever it is. Good luck.

[RLS1952]

Thank you for that. Recently I was given oxynorm in hospital after brain surgery. It did nothing for the pain so they gave me a double dose. No pain relief. No sleep all night and serious rls for about 20 hours, throwing around the leg used for access through femeral artery.

Restless Legs, known as "silly feet" in my family just do not seem to count in the medical profession.