MY ANSWERS

Q. How old were you when the symptoms of RLS first struck?

A. 5/6

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?

A. Sun-up

Q. What was the level of concern that you received from your family?

A. Zero

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?

A. 48

Q. How old are you now?

A. 64

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?

A. Definitely

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?

6 Replies

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  • Q. How old were you when the symptoms of RLS first struck?

    A. Had it since before I can remember. My mother had taken me to Drs before the age of 4.

    Q. Please describe said symptoms.

    A. I can’t remember. Apparently I was crying with pain. Would have been a fidgety child with sleep problems.

    Q. How did you react to the symptoms?

    A. Like yourself, with tears.

    Q. Approximately what time did these symptoms cease?

    A. Can’t speak for the early years but later in childhood sometime in the middle of the night.

    Q. What was the level of concern that you received from your family?

    A. My mother was concerned enough to take me to several different Drs.

    Q. Did you receive belief, understanding, compassion or empathy?

    A. Early days I can’t remember, later on I learned to suck it up and get on with it.

    Q. What was the advice given by the doctors?

    A. Growing pains, (useless uncaring ignorant b*****ds :( )

    Q. How did you cope with school?

    A. I didn't. I was beaten most days, for lack of concentration, fidgeting and daydreaming. Later on in secondary school I spent most of it asleep or standing in the hall for being asleep, well that and a few good beatings from the ever so caring teachers

    Q. How old were you when you were first diagnosed?

    A. 36

    Q. How old are you now?

    A. 46

    Q. What medications are you taking at the moment?

    A. Neupro 2mg, Targinact 40/20mg and Gentle Iron 25mg. That is my basic prescribed drugs with extra Tramadol for pain which I save for RLS. When I can I take cannabis as well, unfortunately I cannot get enough of it regularly.

    Q. What medications have you taken in the past? And why did you cease to take them?

    A. Best – Codeine and Tramadol, stopped as they were high doses and Drs wanted me to stop after they were audited for prescribing practices. Mirapexin stopped due to augmentation and deranged thinking. Lyrica and Gabapentin due to lack of efficacy. Non-prescription drugs included Kratom – a God send and likely the main reason I am alive today. I use it at times but tend to keep it for when my current drugs lose their efficacy. Methoxetamine, an NDMA agonist, akin to Ketamine effective and pleasant sedating high but unable to perform my daily duties stopped because it became illegal and impossible to source. 3-MEO-PCP another NDMA agonist but wholly ineffective. Clonazolam a benzo just left me sedated and restless.

    Q. How would you describe your RLS symptoms now?

    A. Not too bad. At least 50% of the time I am pretty much symptom free, (there is mostly a low key restlessness that is there at all times causing fidgeting but not the pain and discomfort I get when it flares. Some nights my whole body is wracked with it and little I do changes it.

    Q. Has the intensity of RLS increased with age?

    A. Very much so.

    Q. Has the vicinity of RLS changed with duration?

    A. After augmenting I stopped the DA but the symptoms had become more severe and effected not only my legs but my back and arms to the extent that when it is bad I am unable to do anything but roll about on the floor/bed. At its worst it was lasting for about 18-20 hours a day with me rolling and flailing about like a mad man. It got so bad that I spent many nights staring at my drugs wondering if I should kill myself. I got some potent drugs online before the 2016 drugs legislation, enough to kill me a couple of times over. I have a family and that prevented me from doing anything drastic. I still have the substance as I may need it in the future, when the kids are grown and living their own lives.

    Hope that meets your needs.

  • Thx veryvery interesting. Torturous demon. I don't think the name gives it much credibility either.

  • I have a few choice ideas for a name but it does involve a lot of expletives!

  • Thanks made me actually laugh. 😁

  • Ooh, do tell...

  • Knowing raffs, it would be words we cannot say here. :)

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