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?