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.
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.
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
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.
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.. :o
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..
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 ;D
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.
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 ;)
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
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!
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 . . . !
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
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.
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.
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
It hasnt even been suggested to me, I am not even under a respiratory specialist, my Rhuemy is meant to be 'good', he is nice but has stuck me on steroids and I havent had my bloods checked once.
I have noone monitoring my breathing at all and I have brittle asthma, I was under a specialist but the referral only lasts a year and never required another one till now, which I shall ask the rheumy to do when I see him.
But I know you should not stick someone on steroids for two months and not monitor their blood, I now have a stomach ulcer thanks to the steroids and am on stuff for that which isnt helping.
I take the nebulizer twice a day and you are right about the CPAP - it is better to be alive but before I would even consider a CPAP, I want to find out what is going on with my lungs and respiratory system because something is very very wrong and trying to get answers where I live is like using a chocolate fire guard.
I feel very unsupported with our medical system, there is not too much choice in the way of Rheumys but for the moment I would settle for what is going on with my lungs.
My arms get very numb, sometimes to the point where I can get them awake. My tummy acts up at night so that causes problems for me. Biotene does nothing for me, but my dentist gave me a sample of Orazyme and it works better for me. But it is still so dry and you are right, take drugs to sleep dry you out and take drugs to get mouth moist. So darn if you do, darn if you don't.
Corella: You made me laugh with your analogy of a CPAP. I would hope that if this ever happens that you need one, you'd comply. My husband is alive and well at 72 because he has spent the past 5 years on a CPAP. I really believe it has kept him alive. His apnea was very bad.
I am with the rest of you all, the dryness, taking sips of water. I also use a lozenge called OraMoist that I buy OTC and can find at some Walgreens stores. I have to go around town or any town that I am in and buy up as much of this as I can. It costs $10 for 24 lozenges. I sometimes use 2 or 3 a day if I take a nap. I had to get up last night and pee every hour. I didn't go to bed until 3 am and then I'm still getting in and out of bed by 7 am and still not asleep. By then I take a pain med and hope it helps me go to sleep. Lucy
I ended up in ED yesterday, tracheitis got so bad it was awful.
They wanted to double the steroids but because I am reacting so strongly to just 2mg of Dex, I am awake all night and cant work, cant drive - which is not an option, they are keeping me on 1mg and have written to my Rheumy about reviewing immuno suppressive meds.
The specialist said I looked exhausted so I am keeping up with the nebulizers twice a day, monitoring peak flow etc, they took bloods and did an ECG and xray which were OK but registrar reckons disease is highly active in my lungs.
I had to laugh, I overheard some of the junior doctors talking about Sjogrens, not realising I was on the trolley next to them, they were discussing the 'traumas of having dry genitals' - seriously I kid you not and one of the doctors said 'So you are telling me that is what it causes and one of the patients here has that?' - He looked horrified at that symptom, never mind the rest of the symptoms!
I nearly told them to shut up but I kept quiet, they didnt know it was me, so I let them talk and a few of them got involved, admitting they hadnt heard of Sjogrens.
And you know why I kept quiet why they discussed the possibility of dry genitals (mine)?' I kept quiet because at least 4 of those doctors would have gone home that night and researched Sjogrens and all that goes with it.
I kept quiet because the next person that presents to them with strange immune symptoms, one of them just may flip the mental light switch and say to his consultant 'I know what could be causing this dry mouth/eyes/genitals'
And as for me, I went home feeling crap, still needing nebulizers, had to take today off sick but I am so pleased that the junior doctors at my hospital are talking about our illness that steals chunks of our life from us.
(But my genitals are somewhat annoyed that they were discussed so publicly without consent - even if they are not 'that' dry!)
Happy days!
Corella, you are so funny, I had a mental pic of you in your stockings and suspenders ,wearing an eye mask, and pap!!
then to hear the young Doctors discussing your very intimate area with great interest.
You have a great attitude to all your problems even if you have no cure,
hope you find some relief soon , Bless you , Dolly
I;m down to about 3 hours a night now,, as soon as I lay down my arms with go nuts,, and then the legs will switch, and start to cramp up,, its more like a severe twitch that cramps,, this will drive me from teh bed to the chair, then back to bed,, repeat teh routine again over and over,, by the time moring comes i;m so dam tired I cant think straight,, between that,, the salivary gland disfunction,, the dry cough,, eyes that burn,, who knows,, its always something
I haven't read all of the posts on ths thread so excuse me if I am redundant.
First of all, for those of you with dryness that is bad at night, try sucking on a sugar free lozenge of some type when you sleep. I have been doing this for more years than I can remember. It helps to keep the mouth a little more moist.
Remember to use the humidifier in your bedroom as it really does help. Elevate the head of the bed with 8 inch blocks of wood to help with the reflux and with the breathing issues. If you are getting so dry from breathing you might want to mention this to your doc. A sleep study can be helpful. I was on a CPAP for about a year with the built in warm humidified air. Man, that was such a relief and made life so much better for sleeping. My lungs felt to much better.
Any of you that are having issues with lungs try using sterile saline (by presciption only) along with your nebulized meds. Using 2-3 cc ampules with your neb medication really moistens your lungs and improves lung issues. You can even do the saline without the albuterol and feel improvement in the lung discomfort.
Remember that our lungs hurt because they are mucus membrane that dries out. This tissue literally gets tight and stiff from the dryness. Adding the saline nebs is really a lifesaver and helps to cut down on infections in lung. Any mucus membrane that is dry is more apt to have little tiny cracks that let the bacteria in causing infection.
(Info from my Immunology PA at yesterdays appointment) We discussed dryness issues head to toe and Ye Olde Vaginal Dryness became the topic of the day. She stated that a big study from years ago showed that women who used moisturizers on their "bottom" had more moisture and had more moisture!!!!!
Funny statement, but the point is that when you use the vaginal moisturizers you have more moisture---and---because you are using moisturizers your vaginal area kicks kickstarted and will start to produce more moisture. Not like it used to be perhaps, but enough that life is better.
She advised using OTC Silk or K-Y jelly. Use a little on the outside vaginal area and up into the vagina just a little ways. Interesting conversation I thought.
Another thing that works really well for the lungs is the simple little facial sauna. I can't stress enough the importance of this item in the treatment of lung dryness. Please be sure to use the distilled water though that has been boiled because it lessens the chance of these fatal sinus/brain infections that are cropping up. I boil large amount of the distilled water and keep in a gallon container in the fridge. Use it for nasal irrigation, facial saunas and warming up to cleanse my eye lids. Sometimes you can get it on sale. Wish I could find a cheap dodad to distill my own water cause I have spent a lot of water over the years.
Remember the salogen prior to bedtime to help with the increased secretions. Also use the thicker gel drops in eyes or the night moisture goggles.
Last, but not least, please talk with your docs about plaquenil if you are having a lot of joint and body pain. This type of pain is what the plaquenil was first prescribed and it still is the first med ordered for people with rhuematoid arthritis. If you are on plaquenil and still suffering then I would think it is time to talk about a stronger medication. Methotrexate is often used next for the pain.
I know that there is never a total answer for any of these issues. Also, the elavil, gabapenin for the nerve pain along with the Lyrica can make nights better. Elavil or amitriptylene is also good in low dose to help with sleep. Antidepressants are also used to help with pain. They work on the chemicals in the brain to decrease pain.
Also, pain can be helped by placing one of those newer foam mattresses on top of your mattress for more padding. If you have to sleep in your recliner, do it. Better to get some sleep than to toss all night.If hubby isn't happy then sleep with him on the weekend of his nights off. He needs his sleep too and when MaMa is tossing and turning Dad isn't sleeping good either.
The important thing is that often one type of pain/discomfort, is one thing, but when you add more pain it becomes overwhelming to us. We can adjust/adapt to dealing with one or 2 suffering issues, but add more and we are overwhelmed physically and emotionally. I hope that listing these items will help some of you find things that will help your nights. Irish ;D
Irish, those are all great ideas! My humidifier is broken, and I haven't replaced it yet. Wow am I feeling the full effect of dryness now. My airways are dry and irritated, and when I lay down to try to sleep, I can't get enough air, which is, I guess due to airway constriction. Symbiacort is doing nothing for me. My eyes are much worse without the humifier and my lips started peeling again. I noticed my skin is a lot dryer. None of my medications and other aids work well without the added boost of the humidifier. It really makes a big difference! This time I'm just going to buy the cheapest humidifier available, about 15.00 USD. The more elaborate one I had was difficult to reset when it ran out of water and it was a chore to clean, although it was nice to have to fill it only twice a day instead of 3 times daily. Did I mention that I recommend a humidifier? :D
I think the facial sauna will be next on my wish list but the cost and effort of getting distilled water makes these things a challenge. We have hard water here. ???
Stephi, I have seen facial humidifiers at thrift shops. Also, check EBay. Sharon
Quote from: SonicEm on April 06, 2012, 06:00:13 PM
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.
Yes it is a viscous cycle. If I do not get restorative REM sleep I wake up crashing into walls, as though I had no sleep...a day or two of that and the cycle of heck grows wider and faster. Water will not quench my thirst/dehydration and I have to drink Gatorade. I become hyper sensory to sound, light, voices.......then these stressors combine culminating in a headache and neasuea.
My Dr persribed ambien for sleep and topamax for migraine and I use a crock pot next to my bed for humidity. in the summer I have to have a box fan running so it hit my face (drowns out some of the tinnitus...which of course is loudest when the house is quiet)
Before I was Dx I would sleep on the couch, box fan going, and my left leg up and over the back of the couch. Then the Dr gave me a flu shot in my right shoulder and I lost the use of that arm ....so that arm went up in the air over the back of the couch as well. It was exhausting. Somehow I would work come home and crash for 12-14 hr and wake up exhausted go to work, come crash. As you said a viscous cycle. I was there , but became an absentee mother. Our lives unraveled and we are still trying to pick up the pieced 5 years later. Given what I know now I should have been a stronger advocate for myself...but may in truth it just wasn't possible.
If I could sue the original Dr. for negligence....I would. But, the one thing I could and did do was have my daughter ANA checked to establish a baseline/history and my mother was checked as well.
Quote from: slccom on April 12, 2012, 12:23:39 PM
Stephi, I have seen facial humidifiers at thrift shops. Also, check EBay. Sharon
Thanks Sharon, that's an excellent idea! I will start shopping around online so I can get my "beauty treatments"! :D