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LUPUS UK
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I have recently been diagnosed with SLE Lupus

I'm 20 and was diagnosed in October 2013. The last few months have definitely been a struggle! I have been having problems sleeping, even though I feel extremely tired I just can't seem to fall asleep! Is this quite normal?

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I have the same problem feel tired all day and then "wake up" at night.often sit up til 3 am watching telly.

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This is me exactly! It's so frustrating!

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Hi Jasmin. I was diagnosed with SLE in January last year. I had problems sleeping at the time of diagnosis because I was wakened by pain in my hips. This died down when I had been on Hydroxychloriquine for 3 months plus. I then found I had problems getting to sleep. My Rheumatologist diagnosed Fibromyalgia which is fairly common among those who have Lupus and does cause difficulty going to sleep. He upped my dose of Amitriptyline and, as long as I remember to take it two hours before I go to bed, that has solved the problem. Of course that doesn't mean to say you have fibromyalgia or that what helped me will help you but it might be worth asking the question. Hang in there. I am finding that now I have had a year to get my head around it I feel more relief that I can understand why I feel like I do than anxious over the illness. Love Tinksie

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Hi Tinksie, thanks for the info. I'm only on Hydroxychloriquine at the moment but to be honest I don't think it's helping much with the pain but I'm seeing my rheumatologist soon so I will raise this with him.

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Hi Jasmin I too struggle to sleep and find that the worst thing you can do is try to get to sleep. I get up and have a cup of tea watch TV or read a book for an hour and that usually works. Don' fall into the

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Don't fall into the trap of napping during the day as it makes it more difficult to sleep at night.

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Hi Margaret, thank you for the tips. As much as I want to fall asleep during the day I am too busy to get the chance!

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Hi Jasmin, I was diagnosed just before Xmas 2013 and i'm so pleased to see I'm not the only one with sleep issues! Unlike the rest of you I can't keep my eyes open at night but then as soon as I've had 2 hours - DING! Wide awake :( I teach exercise classes in the evening at the fatigue and muscle weakness is proving a real problem... Fingers and toes crossed you find a solution :) please share if you do ;)

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I thought I was alone on this too! Once I'm asleep though it's pretty tough to get up, even after 12 hours sleep! Thank you, I'm seeing my rheumatologist soon so hopefully he will help :)

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Hi Jasmin, Yes can totally relate. Are you on any meds as I know there was a post on here a few days ago where we all discussed the impact of our meds on sleep too. I don't know though whether it is just part of the condition or the meds or because we have to pace ourselves so much that we don't tire ourselves out. It is very frustrating. Perhaps worth raising at your next rheumy/GP appointment though xx

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Hi, I'm currently on Hydroxychloriquine. I agree it is very frustrating! I am seeing my rheumatologist soon so hopefully I can get it sorted :) thank you x

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Hope you do manage to sort it out xx

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I was diagnosed when I was 19 back in Oct., 2011 Story of my diagnosis was a different one because I'm male and black and was from a third-world country who had no hospital with a history of having any Lupus patient.

Anyways, lack of sleep could result from the steroids that we have to be constantly on (some people's doses higher than others). I personally have that issue with them and sometimes, when on dose 30mg and above, I could go for 5 days with only a 2-3 hours of shut eye. It made crazy and I had to result to using knockouts. It made me become a junkie.

But trust me it gets better when you come down to a lower dose. At 10mg, I sleep like a baby moose-lion.

Lack of sleep is perfectly normal and I hope you quickly find a way that works for you.

Let me give you a few pointers:

1) Take your steroid course very early in the morning so that before bed-time they have lost their potency.

2) I just found out last week a mug of hot milk an hour before bed does some wonders for me.

3) Try to take your steroids all at once (that is if you are on a divided doses) but talk to your GP first.

Anyway hold tight. Do not despair. I promise you will have some good times... even better than before you got diagnosed...

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Thank you for the helpful tips, I will take them on board. I'm glad things have got better for you :)

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I've been up most of the night.drives me nuts.in pain and fatigued but can't sleep.

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Hi Jasmin,

If you think it will help i could send you an information pack which contains some very helpful booklets on lupus and a copy of one of our 'News & Views' magazine filled with the latest lupus news and findings which you may find interesting. Just send me a private message with your address, or if you'd prefer you can email me and i will pop one in the post for you. hayley@lupusuk.org.uk

Best wishes,

Hayley

LUPUS UK

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Hiya! I was diagnosed in June last year! I really struggled at first with sleep- I was exhausted, but just took me AGES to get to sleep. As the steroid (started on 60mg) doses came down, my sleep improved and most of the time I sleep ok (ish). I think it was a massive shock for my body as prior to the diagnosis I took nothing, but I think it is getting used to it. But might also be a number of other things helping too (Bowen, thai chi, return to work & routine etc)

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