I hate to even bring this to anyone because it is such a mild problem compared to other's serious concerns .....................but I would really value your input.
I have been sleeping anywhere from 9 1/2 to sometimes 10 hours per night. That's okay right now because I'm not working and no one really cares how much I sleep.
I almost hate to get out of bed because I really cough quite a bit in the AM and it is productive. This has been going on for months. I use my facial steamer, nebulizer (sometimes), Dulera, and now my Dr. Has put me in Nasonex spray. I have an albuterol inhaler, also.
I feel an underlying fatigue that is always with me but it is SO much better since the plaquenil, that I feel I really shouldn't complain.
My sleep seems very shallow with lots of inter flowing dreams. Like so many I don't feel rested when I awake. I hesitate to get out of bed because I know it will be a coughing spree! Once I get all treated it isn't so bad. Constant throat clearing and dry cough throughout the day. Normal for me👎.
I've been tested very thoroughly by an allergist for any kind of allergies and I have NONE! I have been diagnosed with Asthma, which is new since the Sjogrens. I feel that it is all Sjogrens related. No one in my family has ever had asthma and I certainly never had this growing up!
Is this normal for any of you? I saw my doctor for routine checkup and she thought I had a lot of drainage down the back of my throat. (No kidding!). Duh!
She did lab work and my white count is elevated by 2000 but she was not concerned about this.
I am not running a fever and the stuff I'm coughing up is just thick normal crap. Does not appear to need an antibiotic. (Not that they have worked so well for me in the past)
My Dulera had been cut in half so now it is changed to full strength again.
I sometimes get short of breath and sometimes it feels sore to take a deep breath. Not really painful. It just feels like my lungs are chronically inflamed.
I had two Aunts who died from Pulmonary Fibrosis but did not have any symptoms until very late in life - late 70's to 80's. No one in my family has Sjogrens but me.
My doctor really listened to my lungs and they are very clear. I've had many chest x- Rays and they always are good even when I have a bad case of bronchitis!
As I've mentioned before I have a big trip in May with my son getting married. I don't want to be a downer. Also, I would like to try and just work part time after that but I would like to feel better than this.
I hate to complain because I can DO so much! I even go to a water arobics class two to three times per week and do okay there. (It is late in the afternoon). Don't think I would do so well in the AM.
This has been going on for so long that this feels like maybe a new normal? Should I worry about my elevated white count? Is it elevated because my body is simply attacking itself because it sees "self" as a threat?
Any advice would be appreciated. Am I doing everything that I can?
Thanks for reading this.
Kathy
I'm going to focus on the coughing, as it's one of my big difficulties, too.
I don't have the coughing every day, but when I do it is awful - uncontrollable cough, goo running down the back of my throat, and I feel like I'm going to drown. I sometimes cough so hard that it turns into vomiting. It's a scary experience.
I have also developed asthma since I developed Sjogren's. Cold and damp are often a trigger for me.
Here's what my doctor's done: emergency inhaler for the asthma. Flonase and another inhaler for when there are seasonal allergens (spring and fall for me). Neti pot (though I really don't like it).
Here's the other things that I've discovered help.
When I get up, I avoid bending over for the first couple of hours. That means my clothes are at waist height, I don't load the dishwasher, and my breakfast foods are at the top of the fridge.
Cup of warm liquid when I get up. Soothes my throat. Mint tea is a favorite for me.
Don't shower til my nose has cleared, again usually a couple of hours. Showers trigger both the coughing and sometimes the asthma.
Peppermint candy soothes the throat if I do get coughing. If I can catch a breath, peppermint candy sometimes breaks the coughing. Or cough drops.
Don't know if any might help, but they are all pretty harmless things to try.
My husband has COPD and sometimes coughs as you describe...it is frightening..I'm sorry this is happening to you.
I am responding, however, to your description of your sleep. I wonder if you take pain pills or other pills at night. I started to take Aleve at bedtime be cause it lasts longer than the ibuprofen that I was taking. The first night of Aleve was a shallow sleep with constant intense dreams. It was quite disconcerting and I was not rested. I tried Aleve again later and had the same reaction. I now take extra strength Tylenol at bedtime. This might be too simple an answer but it might be worth looking at your night time pills.
Thanks WarmWaters and Lane.
I do not take anything for pain or even anything for sleep, usually. I have occasionally taken Ibuprophen before bed because of wierd muscle aches and sinus pain, but not regularly.
I do sip on warm tea in the AM and PM, and I was advised to add organic apple cider vinegar (one tablespoon) and same amount of organic raw honey to warm water and this helps to clear some of the mucous in the back of my throat.
My steroid inhaler has just been increased so I suppose I should give that some time to work.
I've also thought about calling my doctor for a short scrip for Prednisone. He gives me 30mg for three to five days. But that is not long lasting😞.
I do wonder why my white count is elevated. Does it elevate when Sjogrens is especially active? After all this is the immune system. I can't help but think my own body might be doing this to me and I would like to tell it to "Knock it off!" How frustrating!
Thanks again,
Kathy
I sleep 9 hours a night and need every minute of it. This started with Sjogrens and I have just given into the need for sleep. I dont function very well on less..
Anna
Kathy
I sleep 4-6 hours on humidified BiPap. Then usually an hour nap at some point during the day.
Occasionally I do have vivid dreams that seem to correlate more with my BP or HR going looooow. At least it has gone way low when I wake up and check it when it correlates also to sudden onset fatigue.
Sometimes at night I get the asthma cough so I use my rescue inhaler which clears that up. I have asthma.
Allergies - now that is an interesting situation that your tests came up negative. I say that as I have been skin tested four times over the past 40 years and always came back positive to all the things we can't get away from. My current allergist decided to do serum allergy test for environmental allergies which was ludicrous actually - I provided the prior testing records and he had no interest in looking at then. Dog allergy last Nov kicked up my asthma big time - serum test came back negative - which is weird and I have asked him to do skin testing in the future.
I wonder if something about SJS mucks up whatever the allergy mechanism is. But then when he skin tested for Pre-pen and penicillin I reacted to the SALINE on top of reacting to the antibiotics.
As for the drainage in your throat (don't you just love those duh moments when docs tell you teh blatantly obvious like drainage in the back of your throat?) - since I've been doing the neti pot sinus washes, that has been much improved for me (drainage meaning)
As for the fatigue and shallow sleeping, has anyone done a sleep study on you? A full sleep study can be very informative. Measures a bunch of stuff like EEG, EKG, leg movements, O2 saturation, stages of sleep (my last sleep study I never even went into REM sleep at all), etc. If for no other reason than to rule out a sleep disorder. For example, if you are having apnea issues (cessation of breathing for short periods or hypopneas - partial apneas) that will definitely prevent you from getting restorative sleep.
Also, have you been assessed by a pulmonologist on your lung issues? At one point my apnea was managed by a sleep certified pulmonologist. And with your shortness of breath, seems to me a pulmo consult would be the next step.
Now I do notice at night my asthma tends to act out I guess because it can. What I've found helpful is upgrading filters in air handler to Merv 12 or Merv13 grade. They really grab well the fine particulates. I end up having to change filter every 3 weeks. And I keep a clean house - but it's the crap in the air that is problematic for me. It blows my mind how much crap those filters pick up in three weeks time.
Additionally, I run an air purifier (I just switched to Germ Guardian from Healthmate, as healthmate filters are way too expensive). The one I have also has the UV virus zapper in it.
Additionally, as dry is problematic - I run a room humidifier in my bedroom (one with a humidistat as I have to keep humidity no higher than 45% due to mold issues)
Additionally, every night I take a generic mucinex (NO DECONGESTANT). Keeps the mucus flowing and so far I haven't had a mucus plug in a long while (those can be soooooooo painful)
So those are some ideas you can discuss with your doctor. Personally, I was sent to a pulmonologist by my ENT years ago to address the asthma and sleep issues. I haven't found a good pulmo here so my neuro manages my apnea at this point.
I need 9 hours a night. I could sleep 10 every night and I would feel much better. Alas, with a 8 am job that is just not possible during the week. I often sleep 10-11 hours on the weekend. I take melatonin at bedtime and when I wake up during the night, usually just once but sometimes twice. It let me sleep that much which I really need. I feel awful on less.
I have had sleep issues as far back as I can remember. As a child I was awake for hours after everyone else in the house had gone to bed. When my kids were little - I resembled the walking dead. Especially because I had my first 3 babies in 3 years - and my oldest didn't sleep through the night until she was older than three :(
The best thing that ever happened to me was Zopiclone. I started taking it about 10 years ago. I still get an absolute THRILL from going to bed at night and going to sleep within a few minutes.
But alas - I still don't sleep THROUGH the night. I have a very disrupted sleep for a variety of reasons including physical pain and stiffness (sometimes just turning over is a major ordeal), choking episodes (don't have a clue what's going on there - these episodes come and go), and for awhile I was doing some intense stretching in my sleep (to the point where I injured my right should repeatedly), the occasional hot flash, the occasional anxiety attack - and sometimes for no good reason whatsoever :-\
I am in bed for about 8 hours every night - but it's often not terribly 'restful' :( And - I avoid sleeping during the day as it sometimes results in true 'vivid dreaming' (as opposed to what people often describe as vivid dreams) combined with sleep paralysis, and followed by a horrible sensation of being drunk and/or hung over for a period afterward.
I've decided that in my next life I'm coming back as a cat who can sleep on a window sill in the sunshine for hours and hours and hours on end....
Dear Kathy,
I love to sleep, but I always resist it. And I can't nap unless I am seriously ill. In fact, wanting to take a nap is sometimes my first sign of illness.
At night I want to keep reading or keeping posting, or keep whatever, but finally I give in and go to sleep. I fall asleep in minutes and aside from waking to pee (and spray my eyes and sip some water) I'm back to sleep right away. I usually sleep 9-10 hours a night.
I would always have slept that long, but once we had kids, that was out of the question, and of course work hours always started at 8 am! how barbaric, but true.
So only since retirement have I been able to sleep as long as I wish. And even then not always, due to grandchildren visiting.
I have an active dream life, and sometimes my dreams come back to me during the day, in flashes. I like my dreams, but don't write them down and forget them easily. My pillows are my best friends.
I've had insomnia probably fewer than 10 times in my 73 years, almost always related to the first day of school when I was teaching.
And I've had fewer than 10 episodes of waking up in the middle of the night, unable to get back to sleep, in my life.
My husband on the other hand has many issues with sleep, and suffered from insomnia most of our marriage. It doesn't seem so bad now, but sometimes when I wake up to go to the bathroom, he's on his laptop on his side of our kingsized bed. I just come back to bed and go back to sleep.
I don't know about your cough, except that I had a terrible cough, and it was caused by Lisinopril. When I stopped the Lisinopril, it went away, but I really hated it. It left me completely breathless.
I hope you get some relief.
Hugs, Elaine
Oh Elaine! How I envy you!
Hi Kathy,
I know you are excited with your son's upcoming nuptials. Wonderful time to be had. And SO much to think about.
To answer your question about sleep: Over the last 5 or 6 years about 7 hours each night (withOUT) an aid! Here's the kicker: only about 8 WITH an aid. The difference with a med is more restful sleep.
My post is to the stuff you cough up. I was dxed with GERD in an unusual manner which I will skip over. But with dx came treatment. And that was Prilosec! (before Nexium) And I was better. My only chronic complaint at that time of my life was sinus infections, thick drainage (as you describe), and subsequent treatment. So I go on about 4 or 5 years...and am up to TWO Prilosecs a day and Nexium is approved. They switch me over. Again, it keeps GERD at bay but I start to have this strange "reflux stuff" I couldn't explain...and do not believe I ever mentioned to a doctor.
I'm gonna cut to the chase here as you can google my theory for yourself and find what I discovered a few years ago. First..my sinus infections stopped almost overnight about 5 years ago. About 3 to 4 years ago I started having strange mid-section discomfort which ended up gallstones. THIS dx is what took me to the internet. I calmed the attacks thru diet and then had whatever the gallbladder removal surgery is called. And ...there were "two ping pong sized gallstones" in my gallbladder. Yes, they did it laproscopically...having to break off pieces of those "balls" to get them out of those small incisions!!
Now...BEFORE the dx and removal, I kept wondering why I had zero discomfort with reflux but it would just present itself. And this wasn't just reflux, this was ...er...well, it came all the way up AND out. I hate regurgitation and will do almost do anything to avoid it. Then all of a sudden I couldn't stop it. But what came up was what I could not deny was what I THOUGHT bile was (yellowy and gooey). I may have googled it. I don't remember. THEN...it has continued after the surgery, but clear. I still bring up a clear stuff...also bile. Kathy, this is the type of bile which can occur with Barrett's esophagus. I realized about 4 years before my SjS dx my saliva was compromised due to chronic sialadenitis. So...I knew that thick phlegm stuff was not coming from my parotids nor from my sinuses (remember sinus infections had stopped dead in their tracks before the sialadenitis had reared its ugly head).
So my theory (I am not a doctor) is that the stuff may have been bile. I never asked a doctor, I never discussed it with a doctor, and it is not a condition which is life altering. In fact, when I eat correctly it NEVER happens. Take it for what it's worth. It's an observation.
I offer this as you state you never show any manifestations on x-rays nor when your doctor listens to your lungs.
Hope you have a great Sunday afternoon!
c3
Sometimes I sleep a lot. Sometimes I can't sleep much at all. And it comes and goes from one extreme to the other. I tend to think some of it has to do with other issues I have complicating sleep already. But the sjs definitely plays its role in the hoopla of sleeping extremes.
Just this week its gone from one end of the spectrum to the other pretty rapidly. 3 nights in a row I was lucky to get 3 hours or less of sleep. The height of that extreme I got only 1.5 hours of sleep in 24. Then bam! LOL The tides changed and I can barely keep my head up and my eyes open today even though I sleep soundly more than 12 hours in the last 24.
I have a natural tendency to fight the extremes but I can't rightly say that's the smart way to handle it because I invariably lose the battle and end up frustrated. But when I can't sleep the thing to do isn't to get frustrated. I have a 20 minute rule. If I've been laying down and trying to sleep for 20 minutes and I'm achieving nothing I get up for 2 hours and do anything that won't wake me wide up before trying again. It's harder to fight the can't wake up extreme. I'm up right now staring at the computer and drinking double caffinated coffee trying not to growl at family members who don't deserve it. ;)
I only fight it because if it is this hard to handle with me trying to drive straight I imagine it would be a complete wreck if I let go of the wheel altogether. HOWEVER, it should be said that if it's not this extreme... I don't want to spend my spoons fighting it. I count myself lucky if I get 5 hours of sleep on a restless night and I don't worry about oversleeping until I pass up the 10 hour mark on oversleeping. I figure my body has to deal with more and can't be expected to respond to it within an 8 hour sleep schedule.
Talk to your doctor about the coughing. I notice the dryness means gunk tends to have more difficulty showing itself in the usual manner and therefore goes unnoticed by us and the medical professionals. It doesn't hurt to remind the doctors that any naturally occurring wet symptoms of any illness we experience is bound to be slightly less copious in its moisture dept. And that ultimately means its harder to expel and doesn't look or sound like they expect it to in wetter people.
Hugs, GG
Thanks everyone for all your replies! I have a lot to think about!
LitliwIowa - I have never had a sleep study done. My husband says that I don't snore at all. (But he sure does! Ha ha). He also says he doesn't notice me coughing at night, although occasionally I wake up coughing! My asthma doctor is an allergist and immunologist.
He's a pretty good guy and he is also the only one of my doctors to apologize to me for not diagnosing me correctly. When he found out that I had Sjogrens, he told me he reviewed all of my records to "find out what he missed." He told me that his specialty can diagnose Sjogrens, too, but he felt that he "let me down." (Actually, he really did let me down as his last words to me before I was diagnosed were, "you'll feel better in a couple of weeks no matter what I do." He really did not believe that I was "that sick."
After he told me that, I remember going to my car in the parking lot and CRYING but had few if any tears! Anyway, he apologized to me and gave me a hug which I thought was nice of him. How many doctors do you know who can actually admit they've made a mistake?
I'm thinking maybe I should ask for a pulmonary consult from my rheumatologist. It wouldn't hurt to have a pair of fresh eyes. After all, what's one more doctor after all the ones that we have seen?! 😳
C3 - it is interesting to hear what you went through with reflux. I do have reflux and Barret's esophagus. I sleep with a wedge pillow and I'm on Prevacid which I take regularly. I try not to eat before I go to bed because I think that is the "kiss of death."
Both of my inferior turbinates were removed in my disastrous sinus surgery. I have no trouble breathing through my nose what so ever, but I do feel I have deep sinus drainage that is much thicker due to lack of moisture.
I think this cough could maybe be attributed to both? Maybe a pulmonologist can figure it out.
Meanwhile, I'll try to enjoy my sleep while I can. I used to be the energizer bunny and only slept 5 to 7 hours per night. Never needed more. My heart goes out to the young moms here who find themselves in the midst of raising small children with this disease! I know I would not have the energy to do that now!
Thank you everyone for your advice and kind words! I hope you enjoy your Sunday!
Kathy
Kathy, I take generic mucinex every single night, otherwise I am choking on thick mucus in the back of my throat...I struggle to swallow it.
Even in my sleep I am aware of the choking 'stuck' mucus. I must have both the generic Mucinex and Nasocort every night or allis lose.
The Mucinex and the Nasocort manage the problems.
Hugs, Elaine
I sleep about 8 hours a night. Make sure you don't have silent reflux. It really can cause asthma. Now that I am on nexium, I am off my inhalers. I noticed the plaquenil also helped my asthma.
Pain makes it difficult for me to sleep some nights.
Elaine,
I think you are on to something here. I've been taking generic mucinex twice per day and I think it thins the mucous but I cough quite a bit, still. I do feel like I'm choking in the middle of the night so we are alike there.
My new internist (I think she is going to be good - she at least knows what Sjogrens is and realizes it is a systemic disease), has just put me on Nasonex for the inflamation and terrible post nasal drainage. She told me I would maybe see a difference in a couple of weeks and I should let her know if I want to continue on it.
I've been taking it and also my Dulera has been increased for my asthma. It just could be my imagination but I think the terrible cough might be decreasing? Time will tell.
Deb,
I can take the Precacid twice per day if need to and sometimes I do. I think I also need to "double down" on not eating before I go to bed. The other night I had popcorn and maybe I shouldn't have. I know I have reflux and I always sleep elevated on a wedge and a pillow on top of the wedge. That helps.
Thank you for your suggestions. I feel good about the Nasonex now. What's one more med? Lol!
Kathy
I used Nasonex for ever and ever. The thing is you have to use it for quite awhile before the benefits kick in, and then they are wonderful.
Recently I switched to Nasocort, which it OTC and much much cheaper.
It works as well, as far as I can see.
Good luck, it's not fun to be choking, for sure.
Hugs, Elaine
hello Kathy.
I love to sleep!!!!!!!!!!!!!!!!!!
I sleep 9 hours at night and then maybe a 4-6 hour nap in the day.
I have been known to have a sleep marathon on the weekends (when I still worked)
for 18-30 hours. with waking up to get a drink or go to the bathroom. when I get
like that, thankfully not too often, my husband just lets me go.
Of course, I really never wake up feeling rested.
As for the cough. I do cough many times during the day and I can
feel phlegm in my throat, especially in the morning. I always felt
it was a sjogrens thing.
I would try thinning the secretions with increase fluid and try Mucinex.
You want to get that nasty stuff up and out.
shelly
Shelly,
I agree that this coughing, dryness, and phlegm thing is a Sjogrens thing. I think it attacks us all differently and I think it loves to mess with my sinuses and upper respiratory system!
It could be worse, I guess. Do you ever have times when it stops? I hope this isn't going to happen for the rest of my life. Maybe when the weather gets better I'll get a reprieve? Maybe when the Nasonex and Dulera kicks in.
I'm not working now and I'm hoping to be able to do something part time this Spring. I don't have small children at home and I'll be able to sleep, sleep, sleep. 😄. I just want a little "slush fund" to spoil my grandchildren and to feel a bit more useful. Wasn't planning on retiring this early!😞
I'm with you in that I never feel totally rested. I'm sure all of us have trouble adjusting to the "new normal".
I'll be babysitting my grand baby for two days this week. I love him so much but I am tired after he goes.
At least my family realizes that I'm not "contagious" and can't give anyone my cough or my Sjigrens!
Thanks for your insight. It is so helpful to understand that I'm not alone and yes, this is another part of Sjogrens! Lucky us!
Kathy