TheLupusSite.com banner

1 - 14 of 14 Posts

·
Registered
Joined
·
646 Posts
Discussion Starter #1
Hi All,

I posted about this some time ago, but symptoms still there in full force so just wanted to ask if anyone else has the following problems... or can offer some advice or point towards a cause.

For the last 2 months or so I have hardly been sleeping. I can fall asleep with no problems at all - sometimes too easily. But once I'm asleep I wake up at almost exactly the same time every morning - between 4 - 4:30am - and then just cannot fall asleep. I pretty much just lie in bed waiting for the time to go to work. The waking time pattern is what I find most strange!?!?

I do kind of fall asleep after this for about 5 minutes, but it's not deep sleep and I can feel myself trembling/juddering myself awake again.

Also, I feel very very hot and can feel my body is also very hot - even though here in the UK the nights are getting cold again.

I took my temp this morning and it was pretty normal at 36.4 so I don't have a temperature.

This really really is beginning to get to me as with the fatigue of SLE sleeplessness isn't helping at all :(

I've been to the Dr's who prescribed me antihistamines and also advised taking nightnurse or something similar. But none of this is helping. Even tried warm milk :rolleyes:
 

·
Registered
Joined
·
34 Posts
sleep problems

Hi there,

I can really relate to your post, i too have trouble with my sleep getting hot and feel like im burning. I think it is down to being so tired that the body reacts in this way, i get tremers too.

I have a slightly different problem that i struggle to get to sleep and normally manage to fall asleep about 3 in the morning. It is a vicious circle. I struggle to go into work for days on end because im so exhausted and feel so ill and im sure the lack of sleep plays part in this.

I dont know the answer to how to stop it happening but hopefully some others may have some advice for us. I do think anxiety is alot to do with it too as i feel so grotty and then think i wont sleep so i dont!!

Hope this doesn't continue for you as it sounds like your body has got into the habit of waking at the same time each day, its like you need it not to happen one day and the cycle may then be broken

Jane
x
 

·
Registered
Joined
·
46 Posts
Hi

I know how you feel - I find sleeping difficult too and I often wake up with a night sweat. My GP has prescribed amytriptelene which really helps me get to sleep and stay asleep and also helps with my joint and muscle pains. Why don't you see if your doctor can recommend anything - sleep is so important especially when you're unwell.

Best wishes
Meriel
 

·
Registered
Joined
·
18 Posts
hi i have suffered from the same now for the past couple of years. have tried lots of different things even short course of sleeping tablets from the doctors but nothing seems to work. i think it is the sle but also think that it is because i am so uncomfortable in bed every night due to joint pains and general flares. i too have tried hot milk warm bath etc to no avail, does anyone else have any ideas what might help? mine got so bad i had to give up work.
 

·
The Other Illinois Tammy
Joined
·
1,193 Posts
You could try a fan for the warm body. I have one in my room year round and it helps or just crack on a window. Try listening to your body maybe you are alot like me and have to take several naps in the day. I sleep 8 hours at least in a day but it is 2 hours here and 3 hours there. If after a little while you can't fall asleep get up do something little and then try to lay down again. Not sure if your schedule works with this but maybe your boss will work with you on it. I have also found that a warm shower about a half hour before bed helps me sleep better and a little longer. It isn't science with us just trail and error.
Good luck
onetay
 

·
Registered
Joined
·
893 Posts
It is amazing how people who do not sleep manage to wake up at the exact same time each night.

I have even lain there with my eyes closed semi awake. Upon rising I found it was the exact same time again.

Then there are the nights that Im awake so many times that it would seem pointless trying to discover a pattern

Then there are those nights that are sweaty despite the weather being cold.

The restlessness of legs, any pains making sleep more uncomfortable.

It all sounds normal to me:) albeit exhausting and delibitating.

Rhemedies for lack of sleep include;

Regular times of going to bed...and 10.00 - 10.30 pm latest.

Reducing cafeine in take in the day and leaving off a few hours before bed.

Reducing anxiety. Personally there is so much that goes on unawares.

Writing anything down that needs attention or makes you anxious...pen and paper by the bed should you feel the need.

Exercise.

Meditation.

Good diet.

Quality medication ( knocks a lot a things on the head)

Drinkikng more water in the day.

Anti inflammatory drug - ipbrupropen

Piriton syrup or tab

Dr prescribed sleeping tablet just to get you in a routine for a day or so every now and then.

Cant think of anything else for now

Nicky:)
 

·
Registered
Joined
·
198 Posts
I too have troubles with excessive heat or being so cold I cant get warm. I also have trouble sleeping due to pain, night sweats, lupus headache, and other reasons. I was taking ambien a sleep medicine but my doctor recently gave me Amitriptyline which is a depression medicine but also used to relax muscles. I sleep really well when I take the Amitriptyline in the evening an hour before I go to bed. When I forget to take it, I do not sleep....The pain in my joints throbs like a toothache. I do not need the ambien sleeping pill anymore and I feel safer not being addicted to sleeping pills. I wish you luck. We all need sleep!!
 

·
Registered
Joined
·
646 Posts
Discussion Starter #8
Thanks all for the replies.

The thing is that I'm not actually aching all the time and even then I'm not sleeping.

I can definitely relate to the night sweats :( Before SLE I NEVER EVER EVER broke into a sweat - not even on a midsummer afternoon!

I'm seriously contemplating the sleeping pills - but really do not want to go down this route if possible - hence the antihistamines. Alas, after 2 months of this I can feel my resistance breaking down :(

Will give it 1 more week before i decide........................................
 

·
Registered
Joined
·
893 Posts
Hi Surfer

Just to put your mind at rest:), re the sleeping tabs, I felt it was not a good idea.
By mistake, when my dad was dying over in Vancouver I was offered a sleeping tablet and I never even contemplated it was the strong variety and just took it., and for a few days after that.

A while later I freaked a little (after I googled the name of the tablet) as I have always steered clear for fear of addiction, but in the circumstances, during and just after he died I realised how much better physically I felt even under the circumstances because quite simply - I slept.



If it is prescribed carefully, taken infrequently, and one is mindful of no making an addictive habit of it then I cant see any reason why not.

Sometimes it helps just to know they are there if you need one.
To be honest I have only been prescribed a months supply which I used over 6 month period.

I tend to use Piriton on occassions.

Niether is bulletproof and I believe that anxiety or stress or pain or seemingly nothing will still keep one awake:).
 

·
Registered
Joined
·
646 Posts
Discussion Starter #10
Thanks Nicky. I'm going to give "trying" to sleep a little llonger. And if no luck then definitely going to have to pay the GP a visit :(

Last night I slept 3 hours :(:(
 

·
Registered
Joined
·
3,770 Posts
Horrid isnt it..especially when your so tired...i cant rem the last time i slept all night...
I find it worse just lying there...so i tend to get up have a warm drink...not coffee !! and then try again....
 

·
Registered
Joined
·
3,854 Posts
My sleep has dramatically improved since I hid the alarm clock. I can still hear it when the alarm goes off (it's shoved under my bed), but if I wake up in the night I can't see what the time is, so I have no way of worrying about having to get back to sleep because I have to get up and go to work in two hours etc etc.

Now that I can't see my clock, I rather enjoy waking up in the night (on the occaisions that I do). I feel very luxurious lying in bed in the dark, and tend to drop off back to sleep very quickly, more's the pity, as I really do enjoy just lying there doing nothing.

I know this won't work for everyone as we are all so different, but it has really worked for me.

hth

raglet
 

·
Registered
Joined
·
233 Posts
I take Immovane ( zocor) buddy and it sure helps. I try to take 1/2 a pill at first and have had great success with them. Not supposed to be addicting.
Good luck...
 

·
Registered
Joined
·
14,661 Posts
I sleep like a log unless I am anxious. When I am unable to go to back to sleep after my usual early morning pit stop I know that I am worried or at best over stretched over exerted even if I am not aware of it. I take it as a warning sign, just like when I smell non existant smells

Get your own individual bedding and layer it, sheet, blanket, duvet. I feel boiling 3/4 times a night, automatically fling off the top one or two layers than pull them back over again when I am cooled down. This is supposed to be something to do with autonomic dysfunction. The autonomic system controls all the functions that are necessary to maintain life without conscious thought such as temperature regulation, breathing and heart rate.
I love a bit of background noise, the fan or some thing to listen to on very low and you can buy those background recordings or relaxation tapes. I also find I sleep worse if I do anything mentally or physically energetic a couple of hours before bedtime I might go to sleep OK but wake a couple of hours later. That's even when the activity has been enjoyable. In fact these days I am good for nothing much after 6pm.

There are very few people who would claim to adjust to their lupus diagnosis within a few months and many would acknowledge they never really do. The disease itself has its ups and downs and so does our relationship to it even years after diagnosis. It is much harder for some personality types than others and it affects some people's lives more than it does others, all depending on personal circumstances and of course how lupus is affecting them.

It is much healthier to acknowledge the possibility that one might be worried than to flatly deny it.



Good Luck
Clare
 
1 - 14 of 14 Posts
Top