Sleeping with Symptoms

[SonicEm]

OK so what do you guys do for sleeping past the dry symptoms? or pain? I am walking up with dry throat so only getting fragmented sleep, even with Klonopin and Ambien. I think they actually increase the dryness! Not doing well at all. Losing sleep and appetite too. It's all a vicious cycle.

[Corella]

Im not getting past it at all, I am now in the spare bedroom as my lungs are so dry, unless I drink hourly I cannot breathe.  I am on nebulizers at night and when I lie down I cant breathe - especially on my left side.

There is nothing more I can do, I cannot increase the steroids due to side effects, sleeping pills are out of the question due to dryness and it wont solve the breathing problems for which I need to wake up and medicate and sleep upright anyway and still have to drink every couple of hours.

I am getting used to getting by on minimal sleep and hope my Rheumy may have some answers when I see him in a couple of weeks but some times I wake up with numbish hands and feeling dizzy as my breathing has been so bad.  But what is bad, is I know there is nothing more I can take as I cant increase the steroids.

Its an unpleasant thought that I need to come to terms with.

[Bucky]

Have you tried a cool-mist humidifier in your bedroom?  It might help put some moisture into the air and help with dryness.

Some times when I can't sleep, I find that sleeping in a recliner helps.  I'm not sure why, but many times I am tossing and turning, tossing and turning in bed (and I have a new mattress, so it's not because of the "bed"), but can sleep in the recliner.

Whenever I wake up during the night, I always take a sip of water that is sitting on my nightstand.

Bucky

[dainbramage]

Minimum sleep is what I get.  Then so tired during the day, I so want to nap.  Drs put me on Ambien, I slept great, I just ate great too.  Ate everything in sight while sleeping and gained 30 pounds, had to look into garbage to see what I ate that night.  Had a sleep study done.......guess what that proved???----------> I don't sleep.  Ha are you kidding me? 
Drs put me on Provigil to try to keep me awake during the day, well that stops working after a while.  So I only take it when I work.
Dr trying me on Lunesta, it does make me sleep but I still want to nap. 
None of the drugs has stopped my pain.  The drs keep saying if you sleep you won't have much pain, if you increase your Vit D it would lessen the pain.  (haven't got my vitd up to target area yet)
Mouth can't seem to get moist enough and it burns and it sticks to the top of my mouth.  My nose is so dry it hurts.
So I haven't got ahead in anything.....still pain, no sleep, can't stay awake, dry mouth and it keeps going.

[Iris]

I keep a drink by my bed and have gotten so good at drinking it without waking completely that I don't even remember doing it most of the time.. Except for the fact that it's always almost empty each morning.. I just hope I never get a bug in my glass cause if I do i'll probably drink him too.. 

The pain and cough from my dry lungs are now bearable since I started using a humidifier.. Before that my breathing and the pain in my lungs was so bad I actually thought I was going to die a few times..

And I finally got a PCP that sent me to a pain management doctor for the joint and other pains sjogren's causes.. Even with all of that on a really good night I only sleep 5 or 6 hours..

[irish]

I would advise anyone who is not sleeping well to head to the recliner. Get all you need on a TV tray or end table and just hunker down for the night. Sometimes just leaving the TV on is a way to fall alseep. It is easier to breath this way. and Sitting up more relieves the pressure on the lungs.

Also, put a small humidifier on the table next to you and get more humidity and you will feel better. There are just times that we have to bite the bullet and do what we can. Sometimes you can start out in the bed so your spouse doesn't feel so ignored, but after he/she falls asleep you can head to the chair.

My hubby and I have even talked about putting the recliner in our bedroom. We would have to do a lot of rearranging but so be it. For some reason I have been able to sleep in my bed again, but I bet that I have spent at least 65% of the last 8 years in the recliner.

This is harder on a younger marriage, but at the same time hubby or both need sleep in order to work. I have found that this goes in spells. When I am feeling worse I tend to sleep in the recliner and when I start to feel a little better I head back to bed. Right now I am in bed but not able to go to bed until at least 3 AM due to all the mucus issues and wake up usually around 7:30AM and only rarely go back to sleep. My body is still wanting to get up early to go to work. I always got up around 5:15AM for many years and that has been really hard to break. Good luck to all of you. What can I say. It is bloody #%&* Irish

[Corella]

Its the not being able to breathe that does me in, my arms go numb from it.  Today I am attempting to do my housework - because there is only me that can do it and I dont do dirty houses, although I am doing the bare minimum and resting in between.

I am now really puffed and taking a break - Its going to take a while but whats the hurry.

Then this arvo I shall nap - sitting up.

[mshistory]

I have this problem too - wake up all through the night, sip on the water on my nightstand, try to go back to sleep, wake up because I have to pee AGAIN because I've been sipping on water all night... very frustrating cycle!

I was wondering if those Biotene sprays for dry mouth would work better at night than sipping on water...? Maybe it would give us an extra hour of uninterrupted sleep 

[Luna]

 I wake several times during the night. As the pain gets worse, its more and more. My lungs are not really the problem. It is my joints and muscles hurting. I have to change positions cause they hurt laying on them. I do have to go to the bathroom a lot due to drinking water. I keep water by my bed. I have learned to take small sips instead of gulp. So that has helped just a little with going to the bathroom. I do not sleep well in recliner. It makes me hurt so much, I cant walk the next day. Also firm mattresses. I have to have a soft mattress. Im hoping my new doctor will be able to give me something for the pain. I feel if the pain goes away, I will sleep like a baby. Iannot stay in my bed and sleep in due to the hurting. I havent slept good or felt rested in so many years.

Luna

[SonicEm]

Thank you all for your replies! It really helps to know there are others burning the midnight oil.

I do use Biotene mouth spray and not sip water too much as I would be up peeing all night! I have two humidifiers running - the little one puts out warm mist which I like better but just got a big ole Air-o-Swiss that puts out either cool or warm mist. This has helped a lot. Plus hubbie raised by headboard 6 inches with some wood blocks so this helps with really bad GERD (heartburn). I also put a few Xylimelts in my mouth on bad dry mouth nights. Evoxac helps - I try not to take it more that I have too it makes me feel hot sometimes.

My problem has been reliance on sleeping pills. It is a slippery slope - it helps me get past the pain and get sleep, but the sleep is not quality just quantity. Last night was so bad even the Ambien did not help so I added a bit of Trazodone and then Remeron - very low doses enough to get me a few more hours of precious sleep. Today my energy level is up, appetite is up and I am able to function and do some work.

I have started to taper off the Klonopin and will try substituting the Trazodone or Remeron and take out the Ambien, which does not work for me any more. Such a chemical cocktail!

[Doxie]

I have a big problem with sleep.  I have a cpap with a humidifier, but usually throw it off by about 2:00 am after tossing and turning a lot.

I usually wake up from joint pain, back pain, neuropathy, carpal tunnel, ulnar nerve problems, dry eyes, dry mouth, needing to use the restroom, mucous congestion, and the list goes on.

My Rheumy has given me Trazadone, who helps me fall asleep. It also does help me go back to sleep easier, sometimes.  I sleep better when I  also take something for pain like Tramadol.

It seems like the doctors just can't understand why I don't sleep very well. When I told the neurologist (who diagnosed sleep apnea) that I toss and turn even with the cpap she was dumbfounded, and  can't understand why.

My Rheumy just keeps rehashing the sleep thing, but I don't know if there really is a good solution. He is trying to be helpful though. I guess the Trazadone and the Tramadol will have to do. It would be much better if I could sleep in longer instead of getting up for work.  But that will come about soon . . . !

[DesignerS]

I was beginning to think I had lost my mind! Until I have read all of your posts! This is ME! I have been in the recliner for 20 days straight this time and no break. Cannot lie down, can't breathe. Am on high doses of steroids, dried out to a ridiculious degree, and need water and breathing treatments throughout the night.
I am also suppose to wear a cpap, but toss and turn and it finally hits the floor at some point. I don't know what the answer is to this dilema. I can face about anything if I have enough sleep, but that isn't happening.

Do any of you with these issues take Plaquenil? I am wondering if that helps with the dryness at all?? We have talked about having a recliner in our bedroom too. At least we would be in the same room. 

Designer

[Corella]

Ill be honest with you guys, CPAP is something I will never ever entertain.  I am slowly losing my connection with being female with this awful illness, I am struggling to make the best of my appearance, it is hard enough going to bed needing ventolin nebulizers but I would rather eat my own head than go to bed with a CPAP machine - honestly, I could not sleep with that mask on and my bedroom resembles a hospital as it is, and we wont go into  the whole 'passion killer' routine as in 'I have my stockings, suspenders, my eye mask and my CPAP'.

I am learning to sleep sitting up, I managed 2 hours last night, a bit wheezy now but managing OK, dont know how I shall get to work on Tuesday but Ill cross that bridge when I come to it.

Funny how my asthma was so well controlled but now I have a job pushing air out of my lungs and it doesnt feel like typical asthma, more like a long case of bronchitis.

[Navigator]

I am also waking up in the night because of dry mouth. I find that sleeping on my back dries out the mouth sooner and I do use Biotene gel.  I panic about not sleeping but do find if I exercise pretty hard  in the afternoon I do tend to pass out and sleep through the dryness. 

I am hoping my new rheumy will put me on either evovax or salagen (either one better???) ...because my teeth are just crumbling and my sleep is gone due to night dryness.   I have never spent so much time on brushing/flossing/rinsing...and still have teeth going.

[slccom]

My CPAP has given me years, if not more decades more life. I had stage 1 pulmonary hypertension as a result of oxygen saturation levels that were plunging down into the 50s. I got on a BiPAP and oxygen and the pulmonary hypertension is gone. Really, it is a miracle that I didn't wake up dead one morning, as has happened to many people with untreated obstructive apnea.

It is hard to have any passion when you are dead. I hope that Corella will reconsider her attitude. I am sure that your hubby would rather have you alive.

Sharon