Restless Legs Syndrome

MY STORY

I've been diagnosed (only just recently), eventually with acute and chronic Restless Legs Syndrome. A name that is somewhat new to me.

I have been suffering from this horrible, undiagnosed, and tortuous disease, for over 40 years and have only just sought.out any type of serious help, as everytime I went to a doctor and tried to explain my symptoms and the type of discomfort I had been experiencing, it was unfortunately, always brushed aside, as not being important enough to require any type of serious attention and/or medication.(Of which, BTW, no one, absolutely no one, including the numerous doctors, that I endeavored to discuss this with, even seemed to try to understand, let alone show any interest whatsoever towards my discomfort).

It has been gradually getting worse, over the over the past 12 months (quite considerably so, in fact), so I took it upon myself to undergo some serious research on the Internet.

And that's when I found this group and it completely blew my mind. All of the symptoms that you talk about, are all of the symptoms that I experience.

So I finally got an appointment with a sleep specialist, (and by following the advice from one of your regular

posters, who obviously knows his stuff ... I do apologize to this person as I have forgotten your name but I seriously thank you for your advice), I rocked up to my specialists appointment, with my Quality of Life Statement in hand, (and he was 100% correct is that when you start your quality advice statement it just pours out and you cannot stop. I found it very easy to do and quite cathartic.

And without any hesitation whatsoever, I was immediately diagnosed as having acute and chronic RLS.

He has ordered a sleep study, of which I shall undertake in three weeks time. And in the meantime, has prescribed some sleeping tablets to assist with my insomnia, which apparently is also quite common with suffers of this disease.

He has also presented a drug, of which I have never heard of before, with the name of Sifrol. And since seeing him,

approximately 8 days ago, my life has changed, indescribablely for the better. I now sleep a totally uninterrupted blissful, dreamless sleep for almost 7 hours every night, and my legs are totally 100% still.

But I have to admit, that I find myself to be quite concerned, when I read on this site, the warnings expressed regarding the use, and the dangers, connected to my new drug, Sifrol. However, (my new best friend and savior), my specialist does not seem to share my concerns, and is totally against the use of opiates, at least at this early stage of my diagnosis.

I sometimes want to pinch myself as I can't believe the comfort that I am now enjoying.

My work life has dramatically improved (as I am no longer continually fatigued), and my concentration level has skyrocketed and my energy level and zest for life is totally off the scale.

I have sometimes wondered, did the other doctors that I saw beforehand, think I was making it all up? (And if so, what would be my reasoning behind it? Or did they think I was attention seeking, again, at my age (51) why? I even believed, that sometimes, they thought I was a hypochondriac. I have been told by a couple of doctors, that it was quite possible that I could actually be imagining it all, or even dreaming it, and that it was even possible that it could be all in my head, and I have to admit, that occasionally, I found myself actually agreeing with them.

Oh to be fair, there was a couple of doctors who did seem to have some knowledge on the subject of RLS, (albeit very limited), and therefore did not believe that I was in the category that required any assistance, and that all I needed was to get my sleeping habits normal and regular and maybe even try some meditation.

I can honestly say quite

categorically, and without any hesitation at all, that the help and advice that I received from reading your posts, pushed me into action, and has maybe, even probably, saved my life. How can I ever thank you.

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I remember the glorious early days of taking pramipexole (which is - I think - the same as sifrol). You describe the feeling so well. It is hard to believe that the vast majority of people have that lovely, rls-free sleep as a matter of course. It will be particularly pronounced for you, given the many cruel years you have spent without treatment.

You have clearly done your homework about sifrol and have an idea about its darker side. I would suggest that you enjoy the rls-free joy - it may last for years - but keep a watchful eye on the dose. Be very cautious about letting it creep up. Do be aware of the latest recommended upper limit (I can't remember what it is but it was revised downwards last year by the Johns Hopkins doctors - Christopher Early etc and Dr. Mark Buchfuhrer). Many experts on this side of the Atlantic are not aware of the upper limit and there are numerous examples of people on this forum being encouraged by their doctors to take extremely (almost negligently) high doses. In general, be circumspect about relying solely on your sleep consultant. I dearly wish I had informed myself more fully rather than accepting unquestioningly my own sleep consultant who (in common with many, many other consultants in this area) knew a lot less about the nuances of the condition and the medications than she appeared to.

In your shoes I would be inclined to discontinue sifrol (or at best reduce the dose) once it ceases to be effective at the dose you are on now, at least for a while. There are other treatment options available. This could avoid much suffering at a later stage and may enable you to retain sifrol as one of your treatment options for longer.

I am conscious that I am somewhat raining on your parade. It is wonderful to think that you are enjoying your first rls free nights and I feel mean flagging up the possibility of difficulties which may be (hopefully will be) many years in the future. It's just that there are many rls sufferers - numerous examples on this forum - who have ended up having a very hard time as a result of dopamine agonist drugs such as sifrol.

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Beautifully stated ID , I agree with all you say.

When the time comes , that the Sifrol starts appearing not to be as effective , then don't increase the dose ( as stated) but consider adding Gabapentin at very low dose as a supplement.

Hopefully, this will be many years from now.

All the very best - and thanks for the lovely comments.

Cheers.

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Thanks Madlegs.

I am starting to have more respect for gabapentin (actually pregabalin is what I take). I have been very dismissive of it - possibly because I was first prescribed it while withdrawing from mirapexin after augmentation when needless to say it had no impact. Over the last year or so I have added it in and removed it from my regime regularly. I mainly introduced it to help with insomnia and opioid induced alerting but more recently I think it is helping with symptoms and when I stop taking it the legs ramp up a couple of notches.

Are you still having problems with your oxycontin dose? I really hope not.

And yes, thanks for the lovely comments, Grany.

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Thanks id- I'm going ok- experimenting with food intake , as I think that has an effect. Some nights are good- others , I'm just churning- a fair bit of stress in my life at present. But generally I'm ok and coping , Thankyou.

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Stress is definitely unhelpful to Rls and sadly is seemingly unavoidable in this brave new world of ours. In an unhappy conundrum the sleep deprivation and misery of nocturnal Rls add significantly to external stress. Hope things settle down for you ml. Your contributions on here are invaluable.

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Thank you.

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Can I just ask what you meant by 'Opioid induced alerting'..I work in addictions but not heard that expression before..is it an American term for what we (in UK) call opioid induced hyper-vigilance ?

Also I'm the same as you re Gabapentin..I add and remove as I need but on it's own as a treatment for RLS it did nothing for me...

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When I was treating my Rls with OxyContin I found that I was often wide awake all through the night. I didn’t have the Rls urge to move symptoms but just could not get to sleep. I didn’t even feel tired at night time (although was exhausted by day). I discovered that other Rls sufferers on opioids had the same experience (often methadone - I’m not sure if it is so pronounced with tramadol). I sometimes have the same problem with Kratom although nowhere near as pronounced. I’mnot sure it’s a medically recognized term but I picked it up from other sufferers.

I don’t know if it’s the same as hyper-vigilance.

Re gabapentin (pregabalin in my case) I am planning to ask my Gp to up my prescription to quite high (600mg plus) to see if I could use it temporarily to treat my symptoms alone. I would like to give my opioid receptors a break as all the meds I use currently target them. I am hoping that that might reset my sensitivity to meds as am noticing a disconcerting rate of increase in quantities required to control symptoms.

It’s such a tricky condition to treat - truly an embuggerance - to quote the late great Terry Pratchett (though he was referring to his early dementia)

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Yes I know what you mean now...If I don't take Gabapentin with my Opiate I can be wide awake too. Sounds like we have the same problem. I'm on quite high dose Gabapentin 900mg's a day. I may ask to switch up to Pregablin and try and reduce the Dihyrocodeine. I've had Pregablin before and it knocks me out !!!

I really hate this bloody afflicition....I'm so glad I'm not in a relationship anymore. My lifestyle is bizarre because of RLS...

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I am agreeing with involuntarydancer on the dosage of Sifrol.. It is now recommended to take no higher than point 25mgs that is just 2 pills of the lowest dose. I hope you started at the very lowest dose. This highest dose is what the RLS experts are now recommending. Most doctors , neuro's etc do not know of the new dosages and just want to keep increasing the dose when you tell them its not working as well. But enjoy your new found med and the sleep you are now getting . Just PLEASE dont go above the new recommended dosage. Augmentation is real, and not easy to withdraw from a dopamine med once you keep having the med increased. Again i am glad you have now found some one who listened and knew how to treat you. :)

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I'm so happy to hear you've found relief and received really knowledgeable help from this Forum. We've all tried different medications over the years, unfortunately there is no one med that suits all. Just go with the advice from ID regarding dosage and enjoy those sleepless nights. You're going to a sleep clinic so should get more information there re medication but I would always come back here and check out any further treatment ,just for some feedback...but that's me, you have your own journey ahead of you.

Welcome to the club for one of the most un-diagnosed, dismissed and torturous diseases...I'll look forward to hearing how you're getting along...Good Luck and Best Wishes

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agree this forum is a life saver

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I couldn't agree more about the effect of finding other people suffering with RLS as, when I first approached my GP it appeared that I had some dreaded "lurgy" that was known on this planet! Luckily when i went back to the medical centre and saw another GP (about 18 months later), the GP I had previously seen had retired and the one I had been listed with was a bit more sensible. He admitted he didn't know anything about RLS, and therefore referred me to a local neurologist. Hallelujah! She has been very good.

Like ID said we've got to push our case and the Quality of Life Statement you mention is a good place to start. I'm coming to the time when my medication is about to augment, so I'm getting myself an appointment with my GP to request a referral back to the neurologist, as she said in the report she sent to the GP before discharging me at the end of last year.

I feel confident that I will get the referral I want as I will be quoting from my copy of the report when I see the GP. She specifically mentioned that as I'm at the highest level of the drugs I'm on she wanted me to be referred back to her so she can supervise a change in medication.

I find it useful taking note of what's written so I can quote from the neurologist.

Anyway, I'll have a try!!

Lindy

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Thank you for pointing out the tie in to sleep disorders. I understand the frustration you had in trying to get help. I experienced similar problems with getting diagnosed for Crohn's Disease and in finding the main reason for my migraines. Never worry about what others think about your search for solutions. It just proves you're not a quitter.

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