Stories from people with RLS

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Many people with RLS have amusing tales to tell, while others have inspiring stories of perseverance.


RLS Stories
Restless Legs Syndrome Australia
PO Box 1653
Warriewood Square
NSW 2102

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Mary’s story

Mary had been trying to explain her maddening symptoms to her GP for years, but her description of "jumpy, twitchy" feelings in her legs fell on unsympathetic ears. “I think I know what your trouble is but there's nothing much you can do for that - You'll just have to put up with it. Try getting a bit more exercise and avoid coffee before bed." ...was his best advice.

She had no confidence in that advice! She already took a half hour walk most days and she never drank coffee in the evenings, perhaps only the occasional cup of tea

Her sleepless nights were increasing and the frustration of the relentless sensations was setting her nerves on edge. Alone, pacing the floor at night, she wondered how much longer she could continue this way! She knew she could do nothing to control these crazy feelings throbbing deep in her calves. Why couldn't she just shut them out of her mind? Other people surely could. Perhaps, she thought, she was just too weak. Maybe she was going mad!

In desperation she returned again to the doctor, pleading with him to find a way of relieving her torture. This time he prescribed Valium pills, explaining they would calm her down. Hoping this would be the magic potion she longed for, she took her first dose. Initially, it seemed as though the medication would work, as she was able to relax in front of the television for a change. But later in the wee small hours, awake and unable to lie calmly in bed, she was back to pacing the floor again! Her doctor advised her that she would have to increase the dose for better treatment. It soon became evident to Mary that she was caught between two evils ... without Valium the Restless Legs were unbearable; with Valium her brain was fuzzy a lot of the time, and she knew she wasn't functioning normally!

One day she answered the phone and was surprised to recognize her doctor's voice. He expressed his apologies to her, “I am sorry that I didn't take the trouble to understand what you were saying and find out more about those symptoms you described. Now I know exactly what you were talking about ... I've got the same thing myself and it's driving me crazy!"

Jeff’s story

A sympathetic friend, who knows about the frustration I suffer with my crazy legs, found me the web site of RLS Australia. I wrote to their address, saying I would be eternally grateful if they could help me find a cure or a treatment that would rid me of the torment from my ... HOW CAN I DESCRIBE THEM? ...twitchy, nervy, despotic legs, ever demanding attention!

As a child, I remember times when I felt overwhelmed by an inexplicable restlessness, I was always jigging around. Mum said that I had growing pains, so I wished I’d hurry up and grow! Traveling on a train and visiting the theatre hold memories of nervous anxiety from trying to suppress the urge to move. I still try to avoid places where I will be confined and sitting, which doesn't make me too popular with my wife! My tossing and turning in bed at night must be irritating for her, but she is a very heavy sleeper, thank heavens!

So, you will understand how my infuriating legs are interfering with my job ... I am a commercial pilot. Naturally, I must spend long periods in a confined space, no room to pace around there!

I'm 35, with a family to support, so I'm becoming increasingly concerned that these crazy legs of mine will force me out of a job that I love. It makes me mad to think that weird uncontrollable sensations in the legs rob me of much needed sleep and sometimes cause torment to me when I'm actually at the plane's controls. You're not wrong in guessing that it could be a safety issue!

Sure am looking forward to hearing some good news that might help me with this totally frustrating condition.

Post script:

Jeff’s story has a happy ending, we are glad to report! He was advised to discuss his condition with a Neurologist. He copied some information from the web site, in case the doctor had not caught up with recent research and treatment. Together they have trialed doses of medication and have settled on a dopaminergic agent, carefully working out his optimal effective dose. He has reported, with great relief, that other than the occasional twinge, he is symptom free as long as he remembers to take his daily medication on time. He wanted to pass the good news on to others ... Well Jeff, your story is typical of the frustration felt by many so I’m sure others will be glad to hear that you have found satisfactory relief from effective medical treatment.