One jerk too many!

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I have Restless Legs Syndrome (RLS), also know as Wills-Ekbom disease, and it almost drove me insane – no really!

RLS is a neurological disorder that is characterised by involuntary spasms of the legs. Some people are affected in other parts of the body such as the arms or torso but most sufferers note leg movements. It isn’t just a matter of uncontrollable spasms either RLS is also characterised by an itching, sometimes painful sensation, that usually precedes the spasm and, if you have it anything like me, continues for hours on end.

I first got RLS when I was in my late teens. I would wake up in the morning, have my shower and immediately after the spasms and itching feeling would start. And so would hours of pacing around, scratching, rubbing, putting on moisturisers, bathing legs, doing just about anything to try and settle the movements and sensations.

Some days I would get a few hours reprieve before going to bed when the legs would start up again and I would have to get up and pace and itch and rub… and cry myself to sleep…

At first we thought it may have been an allergic reaction and so I tried various kinds of soaps etc but when this showed no signs of change I started the rounds of doctors and alternative therapists. Years went by and still no herbal remedy or medication relieved, let alone stopped, the symptoms. I was even hooked up to electro convulsive equipment and zapped (yep, shock therapy) to try and determine what was causing the spasms on such a regular basis. Was there something wrong in the brain (Well there no doubt is but that’s another story…).

I dreaded waking up and I dread going to sleep. Driving became extremely difficult – hey try driving when all your legs want to do is flail about and all you want to do is scratch them to try and get some relief…with only two hands to use I found creative ways to drive.

I had constant thoughts of killing myself…

When you have tried just about everything known to be associated with RLS and nothing works and you come to dread waking up each morning knowing that it is soon going to start all over again and you just have to try and get through it and you do this year after year after year for over a decade – it becomes EXTREMELY mentally and physically draining.

Then one day Mum saw a small story in the paper about a Doctor doing a trial of a new drug for RLS at the Royal Prince Alfred Hospital in Sydney and, literally at my wits end, I called up and was immediately placed on the participants list. Well the drug made me sick but something happened by taking the drug. I started to get some relief and while I had to stop the trial drug because that particular one made me vomit too much, the doctor prescribed me a similar drug that is also used for Parkinson’s Disease (thought to be associated) and I immediately found it helped.

I was jubilant!

I started off taking the drug daily and then found that the regularity of the spasm started to decrease. Now, while not cured, I don’t have RLS everyday and when it does onset I usually only have to take about ½ to a ¼ of the tablet and that is enough to settle the legs and give me piece of mind. For extreme bouts I take a whole tablet. 

The drugs I have taken that work for me are Madopar and Kinson both containing Levodopar. Most of the current medical treatment for RLS now points to drugs that are dopamine agonists but there is still no known cure and little substantial knowledge about what really causes RLS. While these kinds of drugs may not work for you, if you suffer with RLS, and haven’t tried them please go and talk with your Doctor and good luck because getting rid of this big jerk saved me!

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