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Sjögren's Syndrome Message Board
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Old 07-05-2012, 09:11 AM   #1
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gac62 HB User
New here

Sorry in advance for the long post. This is my first posting here, but I’ve been keeping track of my symptoms for about 6 years. Just a bit of background: I have Ulcerative Colitis (under control with Immune Suppressants), Diabetes (controlled with diet/exercise), Asthma (not really under control, just changed inhalers). I’ve had pneumonia three times in 26 months. I’m on both acid reflux meds and allergy meds. I’m told by both Pulmonology and Ear/Nose/Throat docs that this is all “a system” and one thing affects another, etc. and they don’t want to stop either even though I’ve never really had any acid reflux major symptoms or allergy symptoms like itchy water eyes or sneezing.
I have had an excessive thirst issue (could be the diabetes) and extremely dry eyes and sinus for many, many years. My primary doc agreed that my symptoms make sense and likely could be Sjorgrens. She has done the initial blood tests, etc. and they are negative. I’m reading that this is quite common. My insurance most likely won’t cover more extensive tests, but I’m not sure having a diagnoses will make much difference - the treatment plan would be the same – treat the symptoms. I have had tear duct plugs for many years already, use several types of eye drops, ointments, and also nasal gel, spray and 2X/daily sinus rinse. Have had joint issues for many years, and this year I’ve also started having issues with tingling lower legs and burning feet which wake me up at night. There is more, but that’s the gist of it.
My Pulmonary doctor has told me more than once my sinus’ looks like I had a recent sinus infection. I’ve never really had any sinus issues (congestion, runny icky nose, etc.), but have been trying to pay more attention to what’s going on. I don’t get a runny nose, or even a lot of congestion. But especially the last year, I’ve had more sinus pressure and my teeth and ear have been very painful. Went to the dentist to be sure it wasn’t tooth related, and after many Xrays, told everything looks good. Have very long roots, to any sinus pressure could make teeth extra sensitive.
Lately I’ve been able to feel the sinus drainage in my throat, where before it wasn’t really an issue. I’ve been watching my throat since October, and it has been swollen, red and raw looking. I have also had voice issues. This could be from sinus drainage, inhaler use, acid reflux, etc. We have not been able to narrow it down.
My thinking on all of this is that it is Sjorgrens and the extreme dryness is causing my sinus’ to be irritated and swollen causing the extra mucous. I don’t really feel it is allergy or acid reflux related. My question is this – has anyone else experienced the swollen and irritated sinus issue which then causes the extra drainage leading to other issues?

 
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Old 07-06-2012, 08:09 AM   #2
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Re: New here

Every symptom you mention indicates inflammation. I too have chronic sinus issues, drainage, coughing, throat so inflamed at times that it just burns. I too went the route of the ENT who diagnosed PPIs (even though I don't have GERD!) and inhalers. Both made me worse! Also be aware that many inhalers make you susceptible to yeast type overgrowth such as candida. I stopped all of it and went on on Weils anti-inflammatory diet, and cut out all dairy which causes mucus and coughing. Our throats need demulcents: licorice root tea, glycerin sprays are some examples. Water is not actually helping us, as it takes the true moisture away. Coconut oil is a great soother, and is also anti fungal and antibacterial. We just don't have enough saliva to maintain the protective mucosa I keep a small jar in my purse and put it in my mouth several times a day, swish it around and swallow. After I started this regimen, my inflammation is almost gone, the blisters on the back of my tongue are gone, and I don't cough as much. The oil also helps keep my lips moist so I don't get cold sores any more.

another way to manage sinus inflammation and dryness is to use a sinus wash. I do a full nasal douche every morning which has Alkalol added to it. Using the NeilMed high volume, low pressure bottles has lots of room add the Alkalol. It is very soothing, and helps moisturize.

Hope that some of this will help. Managing this disease using natural approaches has been the best solution for me. Food, herbs, and spices are my medicine.

 
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Old 07-06-2012, 08:12 AM   #3
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Join Date: Jul 2012
Location: Phoenix, AZ
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MsMarty HB User
Re: New here

Every symptom you mention indicates inflammation. I too have chronic sinus issues, drainage, coughing, throat so inflamed at times that it just burns. I too went the route of the ENT who diagnosed PPIs (even though I don't have GERD!) and inhalers. Both made me worse! Also be aware that many inhalers make you susceptible to yeast type overgrowth such as candida. I stopped all of it and went on on Weils anti-inflammatory diet, and cut out all dairy which causes mucus and coughing. Our throats need demulcents: licorice root tea, glycerin sprays are some examples. Water is not actually helping us, as it takes the true moisture away. Coconut oil is a great soother, and is also anti fungal and antibacterial. We just don't have enough saliva to maintain the protective mucosa I keep a small jar in my purse and put it in my mouth several times a day, swish it around and swallow. After I started this regimen, my inflammation is almost gone, the blisters on the back of my tongue are gone, and I don't cough as much. The oil also helps keep my lips moist so I don't get cold sores any more.

another way to manage sinus inflammation and dryness is to use a sinus wash. I do a full nasal douche every morning which has Alkalol added to it. Using the NeilMed high volume, low pressure bottles has lots of room add the Alkalol. It is very soothing, and helps moisturize.

Hope that some of this will help. Managing this disease using natural approaches has been the best solution for me. Food, herbs, and spices are my medicine.

 
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Old 07-09-2012, 07:21 PM   #4
NBY NBY is offline
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Re: New here

Please if I am wrong someone help me because I am realitavely new here too, but I was told not to take medications for sinus that are antihestimine's (sorry about the spelling) because it dries you out even more, some nose sprays are the same. Of course there are decongestients and the nose spray that makes your nose run, just saying make sure you are not taking something that could be hendering your dryness, it could cause you to me drier than you already are or would be.

 
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Old 07-27-2012, 07:42 AM   #5
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gac62 HB User
Re: New here

Thank you Ms Marty for your comments and hints. I agree with the inflammation and will make note of the items you suggested. I think the inflammation can be caused though by the dryness which causes the moucous....viscious circle.

NBY - I agree with the antihistimines being too drying. Unless someone needs them for allergies should probably avoid them. My pulmonary doctor wanted me on nasal sprays for allergies and also antihistimines and also acid reflux meds - all as a preventative for asthma issues. I stopped doing the nasal because of worsening nose bleeds. Want to stop the acid reflux and antihistimes, but have to make sure my asthma symptoms are not allergy related first. Take something to help one thing and it hurts another - can't win!

 
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