Restless Legs Syndrome
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Working and rls

Hi can i ask how people are managing working with rls. I work 12 hour shifts in a hospital, i can work both night shift and day shift in the same week. Which is now getting a struggle. I am currently on prgablin 25mg one tablet twice a day and rotigotine patch 3mg one every 24 hours. I am now struggling again and beleive i am going through augmentation as playing up all day and night now, i could just sit and cry with it, just want advice on how people manage with working as i am really struggling at the minute. Thank you in advance

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Hi Doodles,

I am attempting to resume work at the moment after many years out of the workplace - initially to rear children and in the last two years because I was trying to get my rls under control.

I really struggle to cope at work. Before Christmas my regime wasn’t working brilliantly and I fell asleep repeatedly - in some very embarrassing situations.

I had to take last week off because I was trying to change my drug regime to something that leaves me a bit less brain dead during the day and was getting virtually no sleep at night.

I don’t have the difficulty that you do of shift work and still I find it extremely difficult. It is intensely demoralising - made worse by the fact that people don’t understand the condition and tend to equate it to insomnia. Not to trivialise insomnia but it’s just not really of the same order.

I wish I had words of comfort. I am filled with admiration for all those who manage their RLS and hold down a job as well.

Incidentally, it does sound like you are augmenting. I think it would be virtually impossible to withdraw from such a relatively high dose of ropinerole while working. Is there any way you could get a sick note if you do decide to try and come off it?

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Hi involuntarydancer

Thank you for the advice, I have got a doctors appoitment for tomorrow and contacted work to tell them.

I had about two hours sleep last night and the worse thing was i broke down in tears and woke my husband and children up who in turn felt helpless that they could do nothing to help me. It destroys your life

Doodles

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Doodles, I wish you the very best. I have thought about you since responding to your post and I do not think I could do what you do, alternating day and night shifts. Working at all with Rls is very hard - I think the optimum is if you can arrange as someone below does to start late mornings as often the best sleep is obtained from 5 or 6 am until about 10am. Be careful of yourself you will do no one any good if you become completely ill with this. Lack of sleep is serious.

Also do not worry too much about your husband and children; it is hard for them to see you like this but it is also the reality of your life and there is an honesty in them knowing how things are for you.

I am not as stoical as you and my children have lived the drama of my RLS throughout their childhood. They have given me enormous support and I think knowing that gives them pleasure also.

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Hi doodles and ID,

ID, I think you got the med wrong. Doodles is on rotigotine rather than ropinirole, but that doesn’t change your story. And I agree with you about the possible augmentation.

Doodles, I had to take sick leave over two years ago and resumed work slowly a year ago. I started out in 15 min bouts and aim for 4h a day now, but often I just can’t do it. Unlike your work, I have to sit and concentrate to read, think and write. Sitting for a prolonged time is challenging, but concentrating is the hardest.

Still, I think I can relate to your problems. ID’d idea is a good one, to ask if you can het a temporal sick leave. Comparable to having to undergo a hospital prpcedure and and subsequent recovery. If not full time, maybe you can work parttime, e.g. only a few hours a day and either dayshift or nightshift only. Prepare well with your gp if she/he is helpful, and talk to your manager.

Incidently, I have wondered several times what the change from day to night shift will do to the rls symptoms as it is similar to a jetlag. Have you noticed reduced symptoms in the first few days after the change? Or not now that you have 24h symptoms?

Hope you find a way. Soon.

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Hi LotteM,

I have got doctors appoitment for tomorrow and taking some time off work as do beleive it is augmentation.

It is horrible to be honest my rls plays up when on night shift and unfortunately i only sleep for 2 to 3 hours so i think this makes my rls worse. I have to take magnesium spray to work with me to try and cool my legs down as always feel very hot, unfortunately aswell our ward is very warm especially on a night time so can be very unbearable i end up pacing the ward. I can also finish night shift at 8am and be on day shift the following day so not much time to catch up on sleep sadly which doesnt help either.

Doodles

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Hi Doodles. I've often thought about trying a permanent night shift to see if I could then sleep better during the day when we have naturally higher levels of dopamine, but the thought of constantly changing shift patterns makes me shiver. I don't know how you cope without some sort of regular routine, even one with bad sleep. I augmented on pramipexole last year starting in May. I had to work a lot from home, and some days not at all, and could generally only concentrate 10-15 mins at a time. I work in IT so it's all screen based. I was "lucky" in that I work at a school, so I then had the summer holidays to go through the withdrawal and start my recovery. However, I went straight back to work last August full time, and it was too much. I still have severe RLS, I'm just over the augmentation and experimenting with other options too many to go into now to try to control things.

I am now working part time and start at 11am so I can try to sneak in a couple of hours sleep in the morning. Works some days, not others. The key thing for me to be able to survive at work is that I've got an adjustable desk so I can stand up for most of the day. If I had to sit down at the computer all day I wouldn't cope. I know that's not relevant for you as it sounds like you're on your feet at work all the time anyway, but it might help others. Ade

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Hi!I m trying to wean off pramipexole because i have augmented.Very difficult.Had to take off time from work because i i am exchausted and couldnt function.Hope it will end soon.Good luck!I really sympathize you because i know what you are going through.

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I work as a hca for the nhs on a renal/urology ward I used to do Day and nights in the end I had to stop doing nights as it mad my life a misery I just couldn’t cope still now even tho I just do days it’s still really tough I take 300mg of pregabalin at night it’s not working any more I’m just sitting in the waiting room of uclh London where I’m seeing a sleep specialist iv had a sleep study last month so hopefully they can give me some answers

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Could you possibly explain how you managed to get an appointment with a sleep specialist? I've been trying for years with no luck to find somewhere that can actually help with RLS, rather than just diagnose it, which I already know of course. My GP has referred my to the center in Guildford, but we never hear back from them. Thanks. Adge

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Hi ya my doctor referred me to go to a sleep clinic I’d get your doctor to chase them up if you haven’t heard anything iv been really lucky iv got a good consultant at uclh London

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finally heard back from them after chasing and have first appointment on 24th april. glad you've been able to get help at uclh, I hear thats one of the best centres

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btw, what was the outcome of your recent visits to the sleep specialist, any good advice or subsequent changes?

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Had my sleep clinic meeting at Royal Surrey yesterday. Not very useful as the consultant I saw was inexperienced with RLS. She's basically going to ask around her colleagues to see if anyone has any ideas, so not holding out much hope on this route at the moment.

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