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Sjogren's Syndrome Support

Emotional support

Hello! I’m having a difficult time right now. I have this non stop phlegm in my throat and sinuses. I can breath clearly through go my nose…it is a feeling of something just stuck up there. my lungs also feel clear. Again, Just the feeling of mucus that can’t be coughed up or swallowed, just stuck there. None of my drs Seem to have a solution or even care too much about it. They seem to blow it off. I’m exhausted, irritated, depressed and feel no one really cares or understands. I usually can’t wait for bedtime because that is the only time I get peace. However, as of lately, I can’t sleep. Then I get more frustrated trying not to cough so I don’t wake the Family. Sometimes I just want to escape from everyone and everything and just be by myself. I hate going to church, movies, the grandkids performances, etc because all I do is clear my throat or cough. I drink plenty of water, do sinus rinses daily, use sinus sprays, stay of the diet that is recommended for sjogrens, as well as limiting any “mucus causing foods”. Nothing works. I was told by my dr just don’t cough. That is easier said tgan done. I used the example to him it would be like you having something in your eye and asked not to blink or close the eye. Or maybe having a running nose and asked not to wipe it… Just let it drip down your face. I feel like I’m just crazy and nothing is really wrong; otherwise there should be something to help. Discouraged is an understatement. Not sure how long I can go on feeling like this.

Hi there Sunshine, I'm sorry you're having such a tough time at the moment in spite of doing so much to help yourself. As you're not sleeping well this will be contributing to how low you're feeling .... I always tell myself that so long as I can sleep I'll be ok as it allows my body to recover/heal and my mind to assimilate. The theory works well, in practice less so. LOL! So I get how it drags you down.

Anyway what I wanted to tell you about is that I developed a long standing tickly cough problem after an infection. The docs said my chest was clear and my bloods were all good so there was nothing they could identify. In the end my GP suggested that maybe my constant swallowing, throat clearing, and coughing was actually irritating my mucous membranes and perpetuating the symptoms ... so it had become a vicious circle. He suggested a mild OTC anti-histamine for a few days. I can't remember which one he recommended but it wasn't too 'drying'. It did the trick in just a few days and because it also made me drowsy it helped me get my sleep back into a routine. So I wonder if it's worth you asking your doc if there is something he can recommend for you to safely try with your Sjogrens. Hope this is helpful and 'sorry' if you've already tried it.

Thank you, jukes g. I actuallybthought about that but was afraid that it would dry me out even more. I took musinex as it says it thins mucus but it is not an antihistamine. I am going to ask the dr about it. I think you are right about getting sleep to recover and heal both body and mind. I appreciate you taking the time to respond.

You are very welcome :-)

Another thing on the sleep front, I now take amitriptylene when needed for my PsA pain and insomnia. I guess it's finding the balance between something which helps the muscus/cough reflex but doesn't make your Sjogrens symptoms flare/worse.

I rely on otc liquid expectorant/cough suppressant. It only lasts 4-6 hours, but it doesn’t have the drying effects of the antihistamines and calms that nagging feeling in my throat. Tussin DM, store brand or national brand are equally effective. Good luck!

Thanks iris. I will try that. I was hesitant because of the drying factor. My eyrs, nose, and mouth are already so dry.



IRIS ARMSTRONG said:
I rely on otc liquid expectorant/cough suppressant. It only lasts 4-6 hours, but it doesn't have the drying effects of the antihistamines and calms that nagging feeling in my throat. Tussin DM, store brand or national brand are equally effective. Good luck!

Wish I could help but I have the same thing. Clearing my throat ALL the time and feel like I am bothering people with the noise. I have to watch what I take do to kidney disease. Hope you have more luck then me.

Thanks. I learning this is not uncommon.



Atina said:

Wish I could help but I have the same thing. Clearing my throat ALL the time and feel like I am bothering people with the noise. I have to watch what I take do to kidney disease. Hope you have more luck then me.

Sunshine,

I have a similar situation that is being treated. The diagnosis: asthma and bronchiectasis (interstitial lung disease) secondary to Sjogren's. I was coughing all the time. My chest was as dry as my mouth and other parts the SS dries out. Also some of the problem was the dryness in my mouth and nose. You sound a miserable as I was.

While the meds and treatments that were prescribed do not cure the disease, they keep me comfortable and reduce the frequency of lung infections. I use OTC, oral NAC (N-Acetyl Cysteine) the active ingredient in mucomist). This was my own choice. Mucinex is a waste of money and time.

Also can you get a referral to see a pulmonolgist (doc who specializes in treatment of lung diseases)? Just like you need a rheumatologist for autoimmune diseases, you need a pulmonologist to diagnose and treat your airways and lungs. I don't want to scare you. But, Sjogren's can cause serious lung disease.

Please keep us informed about how you do.

You got to hold on!

Hi sunshine, its because of people like you posting your symptoms,i get through the day and know I'm not going mad.Past two months I've been going through the same as you, to the point that I hardly have a voice most days, tried to explain to gp acid/phlegm in throat and nose but not so much heartburn.I am constantly trying to clear throat, have a cough that sounds like I smoke 60 a day, but have never smoked in my life... don't these gp and specialists see the link? Anyway its not Gerd I've got but a similar thing that goes to voicebox and sinuses, there are 5 symptoms..cough, hoarse voice, feeling you can't clear voice, sinuses problem etc.I'm awning to see ENT specialist but am now on omeprazole 20mg twice a day, its only been three days, but hoping they will do something x

Sunshine, I feel your pain I have the same issue with the coughing up green stuff all the time, constant infections pain, and on and on. I am recently diagnosed with sjrogens and a million other things I have NO answers yet. I am waiting to see a specialist (its been 6 months of waiting) I am 30 yrs old and have been chronically ill since I was 16 also married at 16. I just got a divorce of 14 years it is almost final. He took my kid and took off 200 miles away. I have NO one but my dad and he isn't the one to talk to. I am LOST and have no answers, actually kinda scared on top of losing everything I had. I am happy I am getting divorced as he did not care about me at all and used me. But where to go from here? If you or anyone needs to talk I would love to find some friends for support and maybe learn some things.

Dear Sunshine,

Oh I completely understand your suffering with the stuck phlegm in your throat and sinuses. I have been experiencing this too and it drives me absolutely crazy. Right now, for me, this symptom is even worse than my fatigue. Here are some options I've tried that have helped. I use a plug in neck heating pad

http://www.necksolutions.com/moist-heating-pad.html

which really seems to help. The plug in is better for me than a microwave heating pad, which doesn't retain the heat very long. I also found on the Sjogren's Foundation website a sheet about how to massage the salivary glands and this seems to help too.

You probably know that there are two prescription medications for dry mouth, Salagen and Evoxac. Salagen didn't work for me but I now take 4 doses of Evoxac a day and I think that helps some. I've googled "prescription medications for dry mouth" and intend to show these lists to both my ENT and rheumatologist. I find the MedActive Oral Relief Spray and also the MedActive throat lozanges much more effective than the Biotene products.

When I am taking a steaming hot bath with a cup of Epson salts for my sore joints, I use a hot wash cloth and press it against my salivary glands. This seems to help, too.

When I am alone, I sometimes take to spitting into a tissue to just rid myself of all the glop. I don't even find that disgusting because it really helps. You can even do this in dark movies, church, grandkids' performances. Just discretely spit into a tissue or dainty hanky and nobody will even notice. Keep several tissues on hand. I can go through a whole half a toilet paper roll in one day, sometimes. I am beginning not to care what people think and I also sense that people hardly notice. After all, we are the ones who are suffering so we have to take good care of ourselves, no matter what others think, right?

It has been my experience, too, that doctors don't seem to take the dry mouth issue seriously. But I share your upset and discouragement. I hope some of my suggestions help and let's keep talking about this.

Have a nice, wet-mouth day,

Fern

I am so thankful and appreciative for all your responses.

  • Jules G, I am going to find a low dose antihistamine. My Doc said chest was clear and blood work good, too.
  • Iris, the Tussin DM is definiately worth a try.
  • Deb, when this annoying cough/post nasal drip started 3 years ago, My ENT also believed it was silent reflux (LPR) which has those 5 symptoms you talk about. I was on various acid reflux scripts for 3 years but after thorough GI testing, it was discovered I did not have acid reflux/LPR at all. I hope you have better results than I did. My throat and voice is the same as yours is on most days. Some days it is much worse than others. I can not find any rhyme or reason - I sometimes think it is some type of food allergy, sometimes just regular allergies...I do know that stress is a main contributing factor. If I'm stressed over a personal/family situation, it is much worse. Then I start to stress over the worsened symptoms...then, I'm doomed.
  • Atina - thanks for your response - I guess misery loves company. All joking aside, I feel better hearing people have the same complaint. Sometimes the DRs make you feel like your a hypochondriac. I sometimes think my family thinks the same thing.
  • USAgurl - I will look for ORAL NAC...YOU SAID THIS IS OTC, right? Your message was extremely helpful and eye opening. Since my lungs always seem clear and the cough is DRY (there is not much mucus; but if/when I can get it out, it is like a thick, sticky blob), I did not consider any pulmonary problems. With you advise, I called the pulmonologist and got an apt. Unfortunately, I can't be seen until 9/25 (but I've been having these same symptoms three years - 2 more months won't kill me).
  • Allisonlovescats, I'm sorry you are going through so much. I hope you find answers and support on this site. I REALLY believe stress in a huge contributing factor in how I feel. I hope you find some way to find peace/balance in your life. Good Luck.

Neutrophils [a type of white blood cells] in blood are supposed to fight against infection and protect our body. A scientist in America has identified 28 types of neutrophils and one type causes Rhemetoid arthiritis. Unfortunately these neutrophil cells destroy the tear secreting cells and saliva producing cells, so the eyes and mouth get dried up. So far no specific treatment is pool proof.trial and error methods are going on.

Among the suggestions that have come so far are to adopt forcible breathing exercise as the body is less energized in this disease. You can check in the Internet KAPALBHATI you tube. It takes to 30 minutes till you sweat in a non air conditioned room to sweat. Person with this disease is not able to do that long duration, but it is possible with a will to do it up to 8 or 10 minutes. Next is acupressure points are there to see in the INTERNET which increase immunity. Two points on the back need the assistance from another person for pressing the points for 3 minutes duration. To relieve stuffed nose there are hand Mudras which can be seen in Images of Internet the response is quick but very very temporary relief is seen.

For sinus there is an ayurveda treatment slice a sour Lemon [Lemna indica] 5 ml[teaspoonful] juice mixed with 7.5ml [one and half tea spoonfuls] of coconut oil in a small cup and start mixing them with finger tip till it turns in to white thick milk that has to be applied mid part of the skull and has to be rubbed till it disappears by absorption. To prepare the medicine and applying really tests your patience. This procedure is repeated for 14 days. There are certain restrictions for this has to consume either warm water or ordinary room temperature water never cold water and not to alter the temperature of water that is being consumed. All items should be warm in the diet, no cold items stored in the refrigerator to be used. Not to eat banana [plantain] and cucumber.

Viswanatha reddy, Bangalore INDIA

Fern, sorry for the long delay in thanking you for your helpful suggestions. I have found the information about mAssaging the salivary glands very helpful. I have done the Epsom salts bath, too. I appreciate your detailed reply and understanding of the frustrations. Thanks again.

Ive just got back from seeing ENT specialist for phlegm, acid in throat, hard to swallow feeling, hoarse voice and dry cough for now over 3 months, most days I have no voice, today I have no voice.ENT bloke put camera through nostril and said its stress, you don't lose your voice and get hoarseness with sjogrens or lupus??? so this horrible feeling in my throat is stress??? for this long???I see so many posts with this problem on this site, how dare he say you don't go hoarse with sjogrens...im in Newport, went to royal gwent hospital, its the biggest around here and I get told this!! so confused and angry

Deb, I feel your pain. I came back From my last ENT apt in tears and so depressed. He doesn’t really listen. I have been seeing him for over 2 years. I went to him with my main complaint of cough/ phlegm. He is the one who thought it was sjogrens, although the blood work did not indicate it. After a year, he did the lip biopsy which proved positive for sjogrens. I try to be concise and provide a list of my concerns and/or questions to save time at each apt. He doesn’t even bother to look at it or address the problems. He came in saying “cough??? That’s something new.” Next, he said “did you have the biopsy…how was that?” I reminded him that my main complaint has ALWAYS been the cough and HE did the biopsy as well as provide the positive result to me. I can’t believe that he wouldn’t glance over the chart for minute to be aware of the MAIN concerns before entering the room. I agree with you, there are so many of us with the same complaint. There must be something related and some way to provide relief. I have tried so many things prior to writing my message here and I have tried others since hearing back from so many of this sight. Just can’t find relief. I’m sorry you are going through this but it does provide a little relief knowing I’m not crazy or alone.

Dear Sunshine,

I posted a rather long winded response to this horrible phlegm problem so right now, I'll summarize my main points. Here are the 3 coping strategies that have helped me the most:

l) Massaging my salivary glands myself or getting a deep tissue massage and asking that the person focus on my salivary glands, jaws, and face. You can actually FEEL your salivary glands making saliva!

2) I also use a heating pad that covers the salivary glands.

3) Finally, I have begun to use an old ladies' little hanky or tissue, which I periodically raise to my lips and discretely spit out all that stuck phlegm. I do this in a very discrete, mattter-of-fact, non-offensive way. This is especially useful during church, the movies, etc., times when nobody's really looking at you anyway. But I also do this when I'm with people I'm ineracting with. I've decided that if someone judges me because I raise a hanky to my mouth sometimes, that person is not worth being in my lfie.

So here's my long winded version: Hope it helps!

"Oh I completely understand your suffering with the stuck phlegm in your throat and sinuses. I have been experiencing this too and it drives me absolutely crazy. Right now, for me, this symptom is even worse than my fatigue. Here are some options I've tried that have helped. I use a plug in neck heating pad

http://www.necksolutions.com/moist-heating-pad.html

which really seems to help. The plug in is better for me than a microwave heating pad, which doesn't retain the heat very long. I also found on the Sjogren's Foundation website a sheet about how to massage the salivary glands and this seems to help too.

You probably know that there are two prescription medications for dry mouth, Salagen and Evoxac. Salagen didn't work for me but I now take 4 doses of Evoxac a day and I think that helps some. I've googled "prescription medications for dry mouth" and intend to show these lists to both my ENT and rheumatologist. I find the MedActive Oral Relief Spray and also the MedActive throat lozanges much more effective than the Biotene products.

When I am taking a steaming hot bath with a cup of Epson salts for my sore joints, I use a hot wash cloth and press it against my salivary glands. This seems to help, too.

When I am alone, I sometimes take to spitting into a tissue to just rid myself of all the glop. I don't even find that disgusting because it really helps. You can even do this in dark movies, church, grandkids' performances. Just discretely spit into a tissue or dainty hanky and nobody will even notice. Keep several tissues on hand. I can go through a whole half a toilet paper roll in one day, sometimes. I am beginning not to care what people think and I also sense that people hardly notice. After all, we are the ones who are suffering so we have to take good care of ourselves, no matter what others think, right?

It has been my experience, too, that doctors don't seem to take the dry mouth issue seriously. But I share your upset and discouragement. I hope some of my suggestions help and let's keep talking about this.

Have a nice, wet-mouth day,

Fern"

Fern, thank you. I read your response and have tried the heat. I have the microwave one and just keep heating it, Epsom baths, etc. the massaging glands is very helpful. I happen to be going to a pt for tmj and after a session with him, I actually drooled during the night. My problem is that I feel the phlegm but it is too hard or sticky to cough up or spit out. I have tried vaporizers and Essential oils, too. I do take pilocarpine for dry mouth 2-3 times a day. My ent thinks it isn’t mucus at all but an inflamed voice box. I believe that’s u be part of it but there definitely is phegm there. One in a blue moon when o can actually get something up, it is a dry sticky blob that I can be picked out of mouth like a pea. I appreciate all the advice and will continue with these ideas. One day, maybe a miracle will happen.

Try a vinegar mouth rinse (diluted vinegar that is). Look it up on the web. Pull coconut oil--in the mouth about a tablespoon--swallow it or spit it out..