The Ravages Of RLS: How I Spread Awareness

In 2002 I found out what was interrupting my sleep. It had a name: restless legs syndrome.

Working to educate health care professionals

Now after 22 years of misery, stress, insomnia, depression, low self image and interrupted holiday, I am actually an "Expert Patient," according to my medical practice where I gave a one-hour talk about "Living with RLS," followed by a question and answer session between myself and the nine doctors seated around the table with me.

Most of them, except for my brilliant GP of twenty years, were aghast to hear my raw honest depiction and explanation of how this destructive disorder has dug itself deep into all aspects of my world. They were all presented with the book that I had written and published, "Restless Legs Syndrome: An Inside Story." These books, I'm proud to report, have gone to medical practices and other RLS sufferers around the world.

Keeping up with the latest research

It's just a book though, and many changes in medications have come about since I first wrote it in 2017. Back then, dopamine agonist drugs were starting to give way to the stronger drugs which are now preferred. I must say, however, that I still hear stories of people currently being prescribed these older drugs, even here in Australia as well as other countries, because many practitioners are unaware of recent developments in research and medications.

Reaching out to others

I set up my own RLS Group in my home city of Albany, Western Australia on Facebook to post up-to-date research papers and such. What more can I do?

As long as I'm still standing, I intend to tell all who'll listen about RLS. We sufferers are struggling within consistent daily trauma, despite some of us putting Pregabalin and Targin into our poor bodies daily.

My symptoms impact everything

My partner of thirty years knows all about the horrors befelling me on our numerous holidays in our country and throughout Asia. No details needed as you all know exactly what I'm talking about.

I am now 72 years old and preparing to have hip replacement surgery. That in itself is another dynamic to weather. During a phone consult with my expert sleep specialist yesterday, I was made aware that RLS could rear its ugly head as I recover -- our bodies set up an inflammatory response after surgery, which may cause worsening symptoms. This is in addition to blood loss and ferritin levels being affected during that time, so I'm on high alert. Although I'm not religious, I will pray to my higher power to take care of me and keep RLS at bay.

I could write for literally hours, but no doubt you have heard it all before, so I will keep it short and direct: Yes, RLS has affected my life in catastrophic proportions. Thanks for listening.