Q. How old were you when the symptoms of RLS first struck?
Q. Please describe said symptoms.
A. They felt like tiny darts being shot from one side of the ankle to the other. The darts are then joined by a strong thick flowing liquid, gushing from one side of the ankle to the other. These symptoms are then joined by a bass drum right in the centre of my ankle, thump, thump, thump.
I desperately want to move my leg but I won't, I'm stubborn (something not unusual in RLS children). So i stay still and not move. The symptoms of RLS begin to retreat, one by one, they're gone, and I relax, for all of about five seconds. But they return, with increased intensity. Again I refuse to accept and give in. I roll over and try to sleep. Impossible. Another win, they slowly begin to disappear.
The intensity of the third wave arrives within another five seconds. It moves up my leg which is now beginning to tremble under the strain of being forced to stay still.
Eventually I have to give in and it wins, and I kick, and kick, and kick my leg as hard and as high as I can, for propably about 15/20 times, until I find peace, for all of another five seconds. This is your night, if you are a child with RLS, trapped on your bed, for 6/8 hours every night, kicking, and kicking, and kicking. If you are an adult with RLS, you have the option of leaving your bed to pace the house to relieve the symptoms, and we do, for about 4/5 hours (or sometimes longer). And then we crawl, exhausted, back to bed, hoping against hope, that you've walked long enough and fast enough to satisfy this torturous demon. And sometimes you haven't, so you have to get up again and repeat.
Q. How did you react to the symptoms?
A. With tears, and with praying to God to please, please, cut off my leg, I promise I'll be good.
Around the age of 11/12 I decided that instead of fighting the RLS I would somehow find a way of joining them. And according to various RLS sites, apparently this concept is not that uncommon.
I would lay flat on my bed on my stomach with my head under the pillow and my feet hanging over the end of my bed. My arms were folded at the elbow and tucked up beside my body with my hands under my chin. I would then rock from my waist down, hence my legs were always moving and therefore not noticing the symptoms.
This format had to be repeated, with 100% accuracy, every night, to allow the habit to form. It took ages to find and refine a routine and rhythm that my body would accept and allow, but eventually it worked, and I won. Of course, I still suffered with chronic insomnia (as most of us do) and it took ages to find sleep, but at least the continual kicking had stopped.
Q. Approximately what time did these symptoms cease?
Q. What was the level of concern that you received from your family?
Q. Did you receive belief, understanding, compassion or empathy?
A. None of the above.
Q. What was the advice given by the doctors?
A. Growing pains, attention seeking? all in the head.
Q. How did you cope with school?
A. I didn't. I was punished somehow, everyday, for lack of concentration, fidgeting, daydreaming, or heaven forgive .... falling asleep.
Slight deviation following.
My education was prodemently conducted in the private sector. Grades 1-6 were considered Primary School. Grade 7-12 Secondary School. At the completion of Primary ALL of my friends left private and enrolled in public .... everyone bar me. Miserable.
The following story was told to me by my mother years later when I was an adult.
One day, when Mum was grocery shopping she happened to run into her BFF who was shopping with another woman. On introduction, this other woman said to Mum, 'Oh, I've been wanting to meet you for ages and ask you something. Why, when you had the opportunity, did you not transfer Patti from private to public'?
In this day and age, Mums character would have said something along the lines of, 'Who the .... are you, and how is that any concern of yours'?
The woman's reply absolutely floored Mum so much that she walked off and left a cart full of groceries behind and headed straight to my school.
Her reply was, 'Because I am so tired of MY daughter coming home from school in tears every day because of how the bloody nuns treated YOUR daughter'.
I remember looking up (I think around midday) and seeing Mum outside the classroom door speaking with my teacher, thinking, 'Oh no, what have I done'?
Eventually the nun arrived at my desk instructing me to clean out my desk as I have an appointment. At the time this did not sound like an unusual request as I believe it was the day before Easter so it would have been the protocol.
I was so happy, didn't know, didn't care, didn't ask. I figured I probably had an appointment with the Dr or the dentist. Didn't matter. Getting out of school alone was enough.
When we eventually made an unrecognisable turn I turned to Mum and asked her, 'Where are we going'?
She reached over, touched my leg and smiled and said, 'We're going to the High School where you're going to take an aptitude test. (A test to ensure that one has the capacity to accelerate into Secondary School. FYI ... I did! So happy.
Q. How old were you when you were first diagnosed?
Q. How old are you now?
Q. What medications are you taking at the moment?
A. Madopar and Sifrol
Q. What medications have you taken in the past? And why did you cease to take them?
A. Gabapentin. Weaned myself off the Gabba altogether as considered i was taking too much medication. No pain for about six weeks but then returned. Was then prescribed Lyrica. Was taken off Lyrica approx six months ago and so far nerve pain has not returned.
Q. How would you describe your RLS symptoms now?
A. Very rare as Madopar controls the pain 100% and the Sifrol disappates the symptoms 100%. Recently I was 'forced' to take some anti-nausea medication which totally cured the nausea but sent my RLS insane. The symptoms were basically the same as I described, but as I spent 5 (yes 5) hours walking, the main complaint that I felt was, my legs felt like heavy, thick tree trunks. How strange is that? Twiggy was the best thing that ever happened to me!!
Q. Has the intensity of RLS increased with age?
Q. Has the vicinity of RLS changed with duration?
A. As a child, my right ankle and leg were the only part of my body affected. Around adolescence? it increased to both legs.
Around 50? it spread to the rest of my body ever so slightly and slowly. I didn't recognise it to begin with as the symptoms were totally different. First, I believe each body part was affected separately. One hand, arm, left side of trunk, head, neck and so on. The symptoms were pins and needles type, itching, sweating. Not at all like the original form. Took a while for me to work out what they were.
So .... that's me, that's my story. Anyone identify?