I am so glad I found this board! Reading everyone elses posts makes me understand this disease a little better. I recently went out on disability and am feeling a little depressed. I miss being a teacher. I miss being productive. I am now lucky to go 3 hours without needing a nap! The fatigue, the dry mouth, the joint pain, and headaches are making my life miserable....but alas...I know it could be worse! Have any of you ever had your mouth so dry that you notice your tongue is stuck to the roof of your mouth? How about talking difficulties? My throat is always clogged!!! Yuk. Anyway...I'll stop griping now. Looking forward to any responses.
Hi Artsyamerican,
Let me welcome you to the SJS World and family! Please do look around the board as you'll finds scads of topics and oodles of information by using the search engine located in the upper right hand side of this page.
I sure do understand waking up and peeling your tongue off of the roof of the mouth or my lips off of the teeth...boy, the first three or four times is scary but it gets easier the more it occurs (I also use a CPAP machine and it's not that unusual to have that kind of problem with that therapy), so its a double edge kind of problem. Whew, there are some days that I wish I could soak my tongue at night so I don't have to worry about the sticking problem...ack!!!
Again, welcome and I hope to see you around the board.
Take care of yourself -
Patze
Welcome to the forum. We should try to keep score of professions. There is a lot of good information on this forum.
Hi and welcome!!
For some the dry mouth is worse then others. Have you considered asking your doctor about Evoxac? Some here have had good results with that or Salagen.
Welcome!
Yes, I wake up at night Sooooo dry I can't swallow or hardly breathe. For a while my whole mouth and throat would dry out then swell up at work. Couldnt talk or swallow. PANIC!!
Recently I have done better and am back at work thatnks to my PCP and a whole regimine of meds plus supplements.
Fatigue is something I can't seem to beat, but I keep trying.
Take care and keep posting.
KellyG
Welcome to the board. Many of us have experienced your symptoms. The fatigue is like no other isn't it?
I had to leave teaching in 2010. I still have moments that will creep up on me, and feel a bit sad.
Mostly though, I am grateful to be home where I can rest as I need to. I am so thankful I do not have to put up with the stress any more.
susanep :) :)
Welcome to the forum!
The fatigue is my worst symptom right now - I teach part-time currently plus have two very young children, so it does make daily life difficult. The Plaquenil has helped with my joint pain, although it still flares up, and I'm Rx strength naproxen as well right now for pleurisy (which is helping, thankfully!) so SjS does seem to throw one thing after another at us.
I don't have the tongue sticking but i can't eat a sandwich without it sticking like paste all in my mouth. I have to keep drinking to get it wet enough so I can chew it and get it down. Other regular foods are not so bad but they have more moisture in them I think.
Teachers are so active and "on the go", I can see where that is a big change for you.
Not sure if we still do but we used to have a "hotline" in town that was staffed by teachers for kids to call with homework questions. Not sure if I was paid or not. And of course we have the Sullivan's learning centers around here too. Not sure if you'd be interested in any of those.
Hopefully you can find something you enjoy that can be done in "short bursts". I am working on tracing my family tree and find that interesting. I can put as much or little time as I want.
Welcome to the Group!
Welcome to our family!
Yes, I have that saliva problem, I take Evoxac and it is a life saver. You should ask your Dr. For some and give it a try, no sense suffering more than we have to. ;)
Artsy,
Welcome to our site! You have already received some good advice, so I'll just say it's nice to meet you.
Cheryl
Hello Artsy,
I worked with students too and I really miss them. I was approved for disability ( and I cried, because there was no hearing? and I wondered if/is my condition worse than I thought?) I experienced a grieving time for the lose of that part of my life.
For dry mouth I put a crock pot near my bed. I wake up and it feels like lizard tongue...lol. Maybe while sleeping we are breathing through our mouth?
I use sugar free Ricola like lozenges and 1/2 of a stick of sugar free gum to create saliva. Your doctor can prescribe a med for dryness.
Dry skin I use regular olive oil as a moisturizer....absorbs right into the skin and has natural antioxidants.
I am having headaches now (today is day 13) 3 advils helped, to break the pain cycle, then down to two and drinking a lot of water and gatorade. The Neurologist I saw yesterday suggested extra strength Excedrin.
Start keeping a diary of what you are feeling, doing, etc., to learn your triggers. Include foods and what makes you feel better. If you can do it on a laptop and then condense it for your Dr. it will help.
Try to stay on your old work schedule (if you need a nap take one...but be careful not to interrupt a normal sleep cycle...it is really hard to correct) Even though we are supposed to stay out of the sun. It is important to "shake your booty" and get some fresh air and exercise. A walk according to your ability is good. Pick a day to go to the library and try to go the same day every week (some have yoga classes, knitting, reading groups). It is very easy and I think normal to isolate when not feeling well, and that becomes a depressing rut.
Hi Amy (artsyamerican),
That a good nickname! Let me welcome you to Sjogren's World! ;) We're glad you found us, and hope you'll find the site as supportive and helpful as I and many others do.
It sounds like you've already gotten good advice. I think we all understand the feeling of loss with no longer working, and how to feel productive in our "new lives." It can be a process and journey to find your way.
I can let you know there are many caring people here who understand and will encourage and support you. Please keep posting; we look forward to hearing more from you. ;)
Take care,
Melinda
Hello and Welcome!!
Yes, I too have awakened to find that I have to "un-glue" my tongue from the roof of my mouth. My lips are stuck to my teeth etc. There are times when I feel the urge to swallow and there is nothing to swallow. Many times I have to be careful opening my eyes because they are "glued" together. I got an eye injury once for opening them too fast.
I, too, had to give up working. That was about a year ago. I am still grieving that. I have applied for disability. How long did you have to wait to get yours?
I am glad you found us. You have a lot of good information to share. Your "teaching" comes through the words you have written. You are very comforting. Thank-you
Duchess
Hello! Welcome! ...and Happy Thanksgiving! I have dryness, but the Plaquinel helped. My worse symtom right now is the joint pain especially in my hands. I have pain meds, but don't want to take them, and the Celebrex doesn't seem to do a thing.
Anyway--enough about me... You will find info. and people who understand here.
Hi sissyjane,
I have a friend who has terrible hand pain and I have hand issues too.........she tried everything out there and it seems that she and I find relief with over the counter ibuprofen. Just 200 mgs begins to unstiffen my fingers and she tried Celebrex and other Rx's to find over the counter ibuprofen helped her hands! Hope you find some relief. I've got hand and foot pain which are the two parts of my body I use the most >:(
Quote from: KellyG999 on November 22, 2011, 07:54:05 PM
Welcome!
Yes, I wake up at night Sooooo dry I can't swallow or hardly breathe. For a while my whole mouth and throat would dry out then swell up at work. Couldnt talk or swallow. PANIC!!
Recently I have done better and am back at work thatnks to my PCP and a whole regimine of meds plus supplements.
Fatigue is something I can't seem to beat, but I keep trying.
Take care and keep posting.
KellyG
I know what you mean!! It is so scary to wake up that way. I was dx with sleep apnea a few years ago but quit wearing the mask because I kept tearing it off my face in the middle of the night. I think I just finally figured out why...because of a dry throat and coughing! I have since started wearing it again because I know I wake up more refreshed when I breathe through the night!! Thank you for the post!
Quote from: Pisces24 on November 23, 2011, 04:31:22 PM
I don't have the tongue sticking but i can't eat a sandwich without it sticking like paste all in my mouth. I have to keep drinking to get it wet enough so I can chew it and get it down. Other regular foods are not so bad but they have more moisture in them I think.
Teachers are so active and "on the go", I can see where that is a big change for you.
Not sure if we still do but we used to have a "hotline" in town that was staffed by teachers for kids to call with homework questions. Not sure if I was paid or not. And of course we have the Sullivan's learning centers around here too. Not sure if you'd be interested in any of those.
Hopefully you can find something you enjoy that can be done in "short bursts". I am working on tracing my family tree and find that interesting. I can put as much or little time as I want.
Welcome to the Group!
Yes - I like your statement about "short bursts" that is so true about my energy waxing and waning. I was thinking about developing a website related to education...that I could do in spurts....I just can't make any long term (or even short term) commitments because every day is unpredictable!
Quote from: quietdynamics on November 23, 2011, 07:02:47 PM
Hello Artsy,
I worked with students too and I really miss them. I was approved for disability ( and I cried, because there was no hearing? and I wondered if/is my condition worse than I thought?) I experienced a grieving time for the lose of that part of my life.
For dry mouth I put a crock pot near my bed. I wake up and it feels like lizard tongue...lol. Maybe while sleeping we are breathing through our mouth?
I use sugar free Ricola like lozenges and 1/2 of a stick of sugar free gum to create saliva. Your doctor can prescribe a med for dryness.
Dry skin I use regular olive oil as a moisturizer....absorbs right into the skin and has natural antioxidants.
I am having headaches now (today is day 13) 3 advils helped, to break the pain cycle, then down to two and drinking a lot of water and gatorade. The Neurologist I saw yesterday suggested extra strength Excedrin.
Start keeping a diary of what you are feeling, doing, etc., to learn your triggers. Include foods and what makes you feel better. If you can do it on a laptop and then condense it for your Dr. it will help.
Try to stay on your old work schedule (if you need a nap take one...but be careful not to interrupt a normal sleep cycle...it is really hard to correct) Even though we are supposed to stay out of the sun. It is important to "shake your booty" and get some fresh air and exercise. A walk according to your ability is good. Pick a day to go to the library and try to go the same day every week (some have yoga classes, knitting, reading groups). It is very easy and I think normal to isolate when not feeling well, and that becomes a depressing rut.
That is so funny you should say that about being approved for disability...made you feel worse because you didn't have to put up the routine fight! I currently have private disability but was told to file for Social Security. I was thinking if they approve me right off the bat...will I be happy or scared?! LOL
Artsy American, if you are approved for disability right away, you will have been an excellent advocate for yourself (without a hearing) -- continue on that track!
Soycoffee
I am wondering how many of us were teachers?
Hi ArtsyAmerican, and Welcome! I joined this board a little over a year ago & it has been the best source of information, support, advice, encouragement, kindness & caring.
I am also a teacher and truly love my job. This time last year I wasn't sure if I would be able to continue. Since beginning Plaquenil & Evoxac in April, I am doing MUCH better.
I still struggle with fatigue, joint pain, dryness, & other SJS issues, but not nearly as debilitating as they were before meds, & I am learning better & better how to deal with the issues I do have. I rest a LOT when I get home every afternoon, & more rest on the weekends.
Before starting Evoxac, my dentist ordered some lozenges for dry mouth. These were really helpful while teaching. I also keep a large water bottle with me everywhere I go, and carry chewing gum & Crystal Light hard candies that help when in the car or in a building with very dry air.
I also have sleep apnea, but use a cool mist humidifier which helps a lot. I also just recently started wearing an eye mask that is helping my eyes at night. The CPAP was blowing air into my eyes, not good.
Search this site for all kinds of information. There was a wonderful thread I think about a year ago about things we keep on our nightstand. I learned lots of good info. from reading that thread.
I'm so glad you found this board. In addition to the support, encouragement, and advice I get from my own posts, I gain strength just from reading what others go through and how they cope. There are some beautiful people on here!
Blessings and hugs,
Joy
Welcome Artsy,
This is the place for you.
Joe, when I retired, I was a college professor starting up and running a school of business for my university in a second location.
They hired four people to replace me. Yep.
It was rewarding and challenging, and I loved both the teaching and the recruitment and organizing of the program.
But once I was diagnosed with my Coronary Artery Disease with the angioplasties and stents, I realized that I wanted more time to spend with my grandchildren, and more energy to live in my community, and do volunteer work, make friends, etc.
It is hard to change what we do, "something's lost but something's gained in living every day." Joni Mitchell.
Welcome again Artsy.
Hugs
Elaine
Quote from: Joe S. on November 26, 2011, 07:16:10 AM
I am wondering how many of us were teachers?
I'm still a college instructor - it does seem to be a common profession here :)
Here is something that I do for the throat dryness. I use the Biotene oral gel that comes in a tube. It is supposed to be for the mouth dryness, but I get the horribly dry throat that is so painful that I can hardly swallow. I use a little bit of the oral gel and mush it around in my mouth and then swallow it. This coats my throat and it relieves the oral and throat dryness at the same time. The gel is water based, but I wonder if that would help a little bit with the night time dryness for you.
We don't swallow as much at night so if there is some in the mouth and throat is may coat enough to keep things a little moist. Good luck. Irish ;D
Welcome artsy! Not so much dry mouth as much as dry throat. I keep a glass of water or tea by my bed. I figure once I go through an entire glass throughout the night, I'll switch to the gel.
My mouth and lips are super dry. I have lip balms all over my house and car it feels like I'm constantly putting it on. Water bottles are also everywhere including my car. This disease has ruined my mouth as far as my teeth go. I have a mouth full of temporary crowns because at $1000 a porcelain crown I can't afford it. You would think since it's from a medical condition that someone would cut us a break insurance wise. I am also very hoarse a lot of the time and have issues swallowing on occasion. UGH.
I know what you mean!! It is so scary to wake up that way. I was dx with sleep apnea a few years ago but quit wearing the mask because I kept tearing it off my face in the middle of the night. I think I just finally figured out why...because of a dry throat and coughing! I have since started wearing it again because I know I wake up more refreshed when I breathe through the night!! Thank you for the post!
[/quote]
See your sleep apnea doc as you can get humidifiers to go with the CPAPs. My ex hubby used to work for ResMed so I know they supply them.
Like Divingdancer, I have a humidifier on my CPAP and boy it sure gets a good work out every night! :D
Patze
I have a humidifier on mine too. It really does help a lot.
Quote from: Patze on November 28, 2011, 06:50:01 PM
Like Divingdancer, I have a humidifier on my CPAP and boy it sure gets a good work out every night! :D
Patze,
I have a humidifier on my CPAP also, but have a terrible time with water in the tube when I turn up the humidity level the slightest bit.
A nurse told me to insulate the tube, so I made a cozy cover for it with several layers of flannel wrapped around cotton batting.
The tube still gets water in it if I turn up the humidity, then it wakes me up with noise of the water & with water dripping down onto my face.
How do you keep this from happening?
Thanks =)
Joy
Hi Joy,
Now mine will also get into the tube and splatter across my face if I put too much water into the tank or if the machine needs to be looked at (had the cat knock it off the stand and it had to be serviced - fine after). Is the humidifier set a tad bit high maybe (mine is usually around 3 and occasionally 4 when it gets really dry)? Has a service rep looked at the machine recently? Have you called the company that supplied the machine for a possible answer?
Good luck with your machine Joy and I'll keep my fingers crossed that your machine is in fine working order soon.
Take care of yourself and keep us updated, okay?
Patze
Patze,
Thank you for your helpful reply.
My CPAP is from ResMed, but I've never had a direct contact with that company. My insurance has me go through a company called Apria. I talked with the Apria representative several times about it & had them look at it. She says that it is working fine, but it happens because we live in a humid area (southern Georgia). The only problem is that it's still not humid enough for SJS dryness.
She says putting insulation around the tube is all you can do. I can only turn it up to about 1 1/2, any higher and water condenses in the tube.
I'm not sure if that's just the way it is & I'll have to deal with it, or if I should pursue it further with Apria.
I count my blessings that I do live in a humid climate with mild winters. It's pretty cold this week, at least for us, with highs only in the 40s. I don't know how SJS folks make it where the winters are cold and long.
I'm just always looking for ways to make things better, & so many of you have a wealth of ideas of what to do!
Blessings :)
Joy
Hi Joy,
I would see if they have a website that might have a section on known problems that can occur with the machine that you use (could your tank be leaking?).
Like I mentioned, I'll put mine up to three on some nights (depending on how my lungs feel), and I don't have a condensation problem like you're having (I have two machines and both are REMstar Plus M series). If you can't find anything, contact the company directly - they may have a quick fix or can offer another option for you.
Good luck and I hope that you get an answer soon!
Patze
Hi, Joy
Welcome to Sjögren's World.
I wanted to answer several things about CPAP, briefly, and your question to Patze gave me a chance.
The problem of water in the hose that you mention (called "rainout") has a cause, and a couple of solutions. The cause is that the heated humidifier condenses when the room it's in cools off for the night.
A. Some things to do:
1. keep the CPAP machine + its humidifier on a table/chair/bench, etc. that is lower than the bed. If it's on a higher surface than the bed, the water can only run down into your nose! That happens to me when I visit my daughter and her family. I take the mask off, and lift mask and hose into the air, so the colder water runs back down into the machine, and gets warmed up again.
2. get a SnuggleHose* cover, so the cold air doesn't have so much of a chance at cooling the humidifier water off as it travels through the hose.
3. pull the hose under the covers with you, and keep the CPAP machine really close.
4. ? maybe? don't turn the heat down so much at night.
* SnuggleHose (tm) is a tube of strong but lightweight flannel that fits over the plastic CPAP machine's hose to the mask. That, and keeping the machine in a lower position than my head, have solved the problem for me. There's a picture at CPAP.com, but it's probably available from, and cheaper at, a mask clinic in a Sleep Center -- if there's one near you.
B. Leaking air into the eyes I don't quite have this solved yet, but I have three different solutions that could be tried by the person who asked this question (and by me). It happens more with full face and nasal masks.
1. CPAP.com shows some cushions that fit over the nose to make a tighter seal with the mask, for nasal and full-face masks.
2.There are also two different kinds of eyelid covers, that keep the air from reaching one's eyes, again for viewing these can be found on CPAP.com, because I'm lazy, and also because I'm not allowed to post exact URLs.
3. Try a "nasal pillow" type of mask, which keeps air a long way from the eyes, and also allows reading in bed.
C. Tearing the mask off in one's sleep
I do this too. Sometimes it's due to Restless Leg Syndrome, I think. Sometimes I wake up with a stuffy nose and breathing through the mask is just not happening. Sometimes I just don't know why. If you've had a sleep study that showed different kinds of interruptions to sleep, that's probably where I'd start.
As Patze has just suggested, look for the manufacturer's web site for existing answers that depend on the machine. I'd add: look for forums on CPAP. (This is not one of them, but if one has Obstructive Sleep Apnea and/or other sleep problems, it definitely impacts Sjögrens.)
Good luck with CPAP. The results are definitely worth the bother.
Best,
Soycoffee