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sleep deprivation in a cycle

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Posted 9/15/2008 1:55 PM (GMT 0)
Keeping this log on a daily basis, was really good advice.  Helps me remember.

I have cycles of good days when I feel good mentally, but can't sleep.  Bad days when my mind is not so good, but I can and do sleep 12 hours sometimes.

does anyone else experience this?  Is this typical for Lupus or does it have anything at all to do with Lupus?  

'Went to bed last night about 11, and woke up at 2:30 and coiuld not go back to sleep.  exhausted due to lack of sleep I think. 

Hester

Posted 9/15/2008 2:58 PM (GMT 0)
Hi Hester,

 

Oh yes, the sleep problems are very common in lupus. It's also VERY common in Fibromyalgia. I'm dealing with erratic sleep patterns right now too.  For me it's the Fibro.  My lupus is dead quiet right now. 

 

The ups and downs with sleep is brutal.  I can relate totally.  Are you taking anything to promote a better sleep?  Are you eating before bed?  That can keep you up.  I also don't watch t.v. while in bed.  It stimulates too much brain activity.  I want to be near comatose when my head hits the pillow!

 

Hope this gets resolved for you,

 

Ginny

Posted 9/15/2008 4:01 PM (GMT 0)
I also have some problems with my sleep cycle and have been having them again lately. I have trouble sleeping at night and then usually nap during the day so then I wonder if napping during the day is causing some of my sleep problems at night. I've been sick lately too so that is probably making me more tired. Like ginny said, sleep problems are vert common for people who have lupus. I do have a quiet night time routine now that does help me fall asleep, but sometimes I still wake up in the middle of the night and can't sleep. It would be good to talk to your doc about your sleep problems and see if he has any suggestions.
Posted 9/16/2008 12:08 PM (GMT 0)

Thanks for responding to my post.  It helps me a lot.  I have had this sleep cycle for a very long time, and assumed it was a mental thing, and not a Lupus thing, but just thought I would ask and see.  I am not glad you have this problem too, but I am really glad that i am not the only one who has it.

Doesn't change anything for me, but it helps to know it is not mental, and it is common with Lupus.  I would not even have mentioned this to the doctor.  Figured it would have just been taken as one woman looking for some narcotic.  Since it is so hard for me to get nexium refilled, a sleeping pill would be impossible.  And even not getting a sleeping pill for a few days of the month, it is still a blessing.  Just to know I am not alone, and it is not all in my head.

But learning more and more as I go, and it is such a blessing to me.

Hester

Posted 9/17/2008 10:52 PM (GMT 0)
Hester-
I have very similar sleep issues. When I am feeling good I have a really hard time to get to sleep. Surprisingly, what helps me most (Don't laugh!) is having a weighted blanket. It is something that you can google and it is sometimes recommended for those with sleep disorders and kids with autism. It is not that heavy but the bit of extra weight actually makes my body relax better than drugs. No idea if it will help anyone else let me know if you have questions.

Sharky
Posted 9/18/2008 2:28 AM (GMT 0)

Thank you Sharky for confirming that one person has this same erratic sleep patterns that I have.  It helps a lot.

how much does this weighted blanket cost, and where would I get it?

thanks again

Hester

Posted 9/18/2008 3:23 AM (GMT 0)
When the Drs. first told me I had fibro. they put me on a low doseage of amitriplyine to help with the sleeping. It took about a month but then I had my first pain free day after over a year. It was so good pain free, not with every thing else I now take a pain pill, muscle relaxant and the amitriplyine at night to sleep. I try very hard not to take the pain or muscle relaxant pills except at night as I don't want to get hooked on them. So unless I'm in really bad shape only at night.
Posted 9/18/2008 3:50 PM (GMT 0)
Weighted blanket? How interesting that such a product exists. I usually sleep under an extra comforter, with additional weight provided by my cat -- and turn down the AC to about 65 -- I never thought that a product might exist to provide weight without heat! Very cool (lol). When I searched for "weighted blanket" I found several providers, one of them is www.weightedblanket.net
Posted 9/18/2008 4:22 PM (GMT 0)
When the Drs. first told me I had fibro. they put me on a low doseage of amitriplyine to help with the sleeping.

I have been diagnosed with Fibro but it was the doctor that died who diagnosed me, and just like with Lupus, they did not trust Dr. Marlowe's diagnoses.  Dr. Marlowe delivered my second baby 42 years ago.  We had a good doctor/patient relationship.  But he was a recovering drug addict, and I am sure that this has something to do with doubting his diagnoses.

However someone provided a really good list here of the symptoms of Fibro.  i have 29 of those symptoms provided on that list, so will ask my rheumy to consider fibro, when I go into see him next month.  I will also take him the list I made of the fibro symptoms that I have.

The cycle has changed again, and I was able to sleep last night.  This cycle of good days/bad days are reflective of where my mental mind is at the moment.  Usually the good days last two weeks.  Not this time, only lasted  very few days.  It might be my mental illness, and not just Lupus or Fibro.  I believe I have lupus, it is time to stop denying it.  and I believe I have fibro, but this mental illness may have more control over the bad days/good days than I want to admit.

someone on here, Sharky I think, admitted so easily that she has a mood disorder.  For me that takes a lot of courage, and maybe for her too. 

still it is good to know that others have this good day/bad day cycle.

I will ask my family doctor for something to help me sleep during the good days.

Thank you for responses

Hester

Posted 9/18/2008 5:51 PM (GMT 0)
Hi Serina and all-

So if you google "weighted blanket" there are some companies that make them. Additionally, if you can sew (or know someone who can) you can add pockets to an existing blanket and fill the pockets with various things to add weight. There are also patterns out there where you can make it from scratch... If you look around a bit, this is something that has helped various ailments including restless leg syndrome, fibro, as well as sensory disorders like autistic spectrum disorders etc. There is some info out there about theories of why it may help and the "sensory" relaxation effects... Being on so many nasty drugs, I was glad to find something drug free!... i actually originally thought of it when they put the huge apron thing on me for a dental xray and suddenly i got relaxed and kind of sleepy...

I do indeed have a mood disorder which on top of prednisone jitters/agitation, lupus and all the rest of this crapola sleeping can be a nightmare (haha. no pun intended). I do take flexeril (2.5-5mg) at night as well- which doesnt put me to sleep. however, higher doses give me a next day drug hangover and that does not work for me.. I wish you the best of luck...

lynnwood- haha. yeah, it is funny the things that people "invent". Whenever I am thinking, "wouldn't it be nice if those to items could be combined..." usually I google it and find something like that. I hate being too hot when I sleep but can't sleep well without something heavy on me, and since i doubt stealing the lead apron from the dentist would do me much good, this seemed the next best thing. smilewinkgrin in your case, it may be a good investment AND cut your energy bills!! :)

Take care
Laura
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