Restless Legs Syndrome: An Inside Story
My life changed in 2002 when my doctor gave me a name for my nighttime misery: restless legs syndrome (RLS). I had never heard of it.
My journey through the years
Back then, dopamine agonists were the bee's knees in treatment. About 20 years later, having experienced the effects of augmentation in the worst possible way, I was weaned off Pramipexole and started on Pregabalin.
The thought of taking Lyrica has always sent chills down my spine and I vowed never to take it, but I found there were no other options. I suffered its side effects for more than two months before deciding it was not something I planned to keep taking.
In addition to all this, a sleep specialist had also started me on 7.5 mg Targin (Oxycodone), so there has been a whole lot of medications going into my system. My RLS symptoms have been all over the place.
Sharing with the world
In 2017, after many years of research, I spent a year writing a book from the point of view of a sufferer. I published the book after having my doctor check through every chapter as I wrote it. Later, he came to my book launch and spoke about how he had supported and treated my RLS for twenty years. He commented on how he admired my effort, my ability to face RLS head on and my strength for overcoming the terrible times of augmentation and so on. But really, we just march onwards because we have NO choice, do we?
Telling the whole truth
This past January, the medical practice where I see my doctor asked me to do a presentation for their practice team. I feel privileged that they asked me as an "Expert Patient."
My doctor discussed RLS medical management to the other doctors and nurses, and I told them in raw, unadulterated facts just what I and others go through.
I wanted to shock them, to make them sit up and listen, and to take something of my talk away with them for future patients.
I needed them to realise how devastating, how cruel, how horrendous and how torturous the symptoms are. I told them that you are all out there fighting your own private war with only the basics of RLS medical support and intervention. We know there's no cure.
Ultimately, I hoped they considered for one minute how it might feel if, as tired as they are after work each night, that something would stop them resting, relaxing and sleeping. It's cruel and dehumanising. I feel as though I am drowning.
Most people out there on this planet have no idea what RLS is, how it can affect us, who gets it, how it's managed and how many millions of people around the world have to suffer every single day of their lives. We are all struggling to try and maintain some semblance of quality of life, but it's a hard slog.
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