Trouble sleeping

[jaygee]

For as long as I can remember, I have trouble sleeping.  This is not to be mixed with the "I can't sleep as my mind is busy" thing, this is just a regular thing for no good reason.  Sometimes I am so tired I have to get the energy to go to bed LOL!  Then I am so very tired, yet roll around till 2 or 3 am.  Then, when the alarm goes off, I really want to continue sleeping (have to get up at 6.15 to 6.30 am daily, for work).

Is this anything to do with SS?  I never mentioned this to rheumy.

PS:  Had all my bloods done on Friday, GP has asked to see me, following letter from rheumy, but don't see rheumy again until 18 July, to go through test results.

I don't know.  Some days I think I am kidding myself I am ill, other days it just hits me - bam!   xx

[amk922]

I have pretty regular insomnia as well.  Sometimes it seems to take forever to fall asleep, and I'm a very light sleeper.  I'm not sure if it is a SJS thing, since this seems to have been an issue long before I was diagnosed.  I do know that it gets worse when I have to go on a short period of prednisone, but I'm pretty sure that is a known side effect.  I am woken up frequently by some neuropathy in my arms (ulnar nerve) where I wake up with half of one or both of my hands asleep, as well as a strange pain in the cartilage of my ears if I sleep on them the wrong way. 

I'm sorry I can't be more helpful, but you are not alone. Maybe someone else can shed some light on any relation to SJS.

[Scottietottie]

Hi Jaygee

For as long as I can remember - I've been like that too. Can't get to sleep - and then hate getting up.  I've always been like it from childhood onwards.

Take care - Scottie 

[jpd54]

I don't sleep either.  Can't go to sleep until 11 or 12. Wake up between 2:30 and 3.  Can't go back to sleep until about 4:30 or 5.  Rheumy had me take 2 muscle relaxers at night.  That didn't help.  Then tried Ambien, alternating nights with the muscle relaxers.  That didn't help. Now she has changed my meds again.  It's terrible to wake up already tired.  By the time I take a shower and wash my hair, I'm ready to go back to bed.  

Tired before the day begins!!!!
   
     jpd

[Patze]

Hi jaygee,

Like several of the others, I had awful insomnia too. It was so bad that I was lucky to get 20 minutes sleep every 3-4 hours, and I didn't think I'd make it.  Now a days, I only get up two-three times a night, but I really don't get into the rem sleep like I used to before this mess.  I hate it, I'm going to be tired anyway, so why bother?  

Whew, I feel for y'all that is having to deal with the wild insomnia!  Who's taking sleep meds?  If you are, is it working for you?


Patze

[Poochie]

It's either feast or famine with me.  I go in spurts.  First I can't sleep, then all I want to do is sleep.  Right now I'm on my sleep cycle.  I go to bed about 1:30 or 2 a.m. fall sound asleep only to wake up about 6 a.m. like someone has shaken me. 

Then there are times I go for 2 or 3 days without any sleep to amount to anything.  Maybe 2 hrs. here, an hour there.  I am comfortable right now with my sleeping, however, I get up around 6 or 7, then I'm ready to lay back down around 11. 

It's crazy, but I feel for you who can't sleep.  It's the worse symptom of this disease, if it is a part of it.  If I get at least 5 hrs. sleep at one time, I'm good to go the whole day.  But those nights are few and far between. 

I've taken Ambein and had the worst nightmares you could think of.  Even Steven King would have paid good money for them.  The only thing that I ever took that helped was Tylenol PM, but it dries you out.  We can't seem to win no matter what we do.  Maybe we could all meet in the chatroom for an all night chat sometime.

Pooh

[watoozie]

I also have insomnia - I just don't sleep!!  My rheumatologist put me on Restoril, 30mg.  I take it about 30 minutes before bed and I am so rested and not groggy in the morning.  I've tried not taking it and I don't sleep - at all.  I guess if taking a pill lets me sleep that is better than fidgeting all night long.

[katyjo]

I don't drink caffiene and I still can't get on some nights.  The funny think about me is that I'm so cold when I sleep late at night then by morning I'm not cold anymore.  I can't sleep even when I'm tired.  I have yet to see the doctor after my kids get back to school in September. 

[Patze]

Hi Katyjo,

You've mentioned that you're so cold when you sleep at night and warm when you wake up, have you ever had your thyroid checked lately? 

I'm sorry, but I don't remember if you have you found a GP yet?  If you have, what did he say about your symptoms? 

Take care -

Patze

[Lesleybird]

   Ask your doctor for some Cymbalta and Ambien.  The ambien (sleep med) that I take is 10 mg. and I only take it when I have to work the next day. Also I started on Cymbalta 30 mg. twice a day for fibromyalgia pain and a wonderful side effect is it relaxes your racing mind and your muscles so that your can sleep more restfully. The Cymbalta is listed for three uses.....pain control, depression, and generalized anxiety dissorder. I never realized that I had a lot of anxiety until I took this med and it helped. I find that I cannot turn off my mind enough at night to relax and go to sleep....the Cymbalta helps with this and I don't toss and turn and have restless thoughts all night.                             Lesley

[Wynter]

The doc that I go to gave me a prescription for Dioxepin, which is an antidepressant. I am supposed to take 1 tablet 2 hours before bed. It makes me sleepy, but it also makes my mouth sooooooooo dry. The dryness bothered me so much it offset the relaxing feeling. I found out it has diphenhydramine (spelling??) in it, as do alot of antidepressants. Does anyone know of one that doesn't have diphenhydramine. It is an antihystamine, so know wonder it drys my mouth so bad.

Lesleybird, does Cymbalta have any antihystamines?

[Poochie]

Okay, my sleep cycle is over.  I went to bed at 1:30 a.m. as usually, woke up shaken out of my sleep with my heart racing about 3:30 a.m.   Sat in my recliner untill 6, tried again to no avail. 

I guess it's back to knitting and reading until I fall asleep.   Thanks Sjogren's for another of your unwanted gifts. AAuuggghhh!!!!

Pooh

[jaygee]

Thanks for all your replies     I see the doctor next week and am going to mention it as it is driving me mad now.  I am ok to take a nap at weekends but when I need to sleep, it just isn't happening     I am sooooooooooooooooo  tired.

It is lovely to talk to people who understand.  Thank you.  xx

[beverly jane]

love my recliner  in middle of night when I cant sleep or arms and or legs tingle. its that or stand up all night..

[Poochie]

Oh my Beverly, where would we be without our recliners.  Mine has been a lifesaver for me.  I get up from bed when I am at that point of screaming.  Drag my pillow and small down comforter with me, down the hall to living room.  There I sit in my recliner, click back one setting, lay my pillow in my lap, cover with my comforter, lay my arms on the pillow and rest my head in the corner of the wing upright.  (I can't lay my chair all the way back because the world spins out of control on me.) 

The pillow in my lap keeps my arms and hands from going to sleep.     Can't let them sleep if I can't. 

Thank God for recliners and pillows.

Hugs to all,
Pooh