Sleeping with Symptoms

[Corella]

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.

[dainbramage]

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.

[eyeamdry]

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

[Corella]

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!

[Dolly Dimples]

  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

[lostone]

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

[irish]

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

[stephL]

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? 

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. 

[slccom]

Stephi, I have seen facial humidifiers at thrift shops. Also, check EBay. Sharon

[quietdynamics]

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.

[stephL]

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"!