Sjogren's Syndrome Support Group

I have secondary Sjogren's. My eyes do not seem too bothered but I take saliva replacement 3x/day. I want to know if there is anyone that battles thrush AND/OR a sore/irritated throat with their flares? I don't want to be on Nystatin & 2% viscous lidocaine the rest of my life gheeesh!

Also, does anyone have any swallowing difficulty during a flare? Responses much appreciated.

I have difficulty swallowing. It's terrible, you try and swallow a pill and drink first to get the throat hydrated and then when you take it, its like the throat forgets how to work and the pill nearly chokes you.

Yes, I have swallowing difficulties and saw a speach pathologist about it. Best she could tell me was to drink a lot to flush things down and eat just soft, moist foods.

My flares seem to change so much. I'll have a flare with just the inflammation and then a few weeks later have some with just the dryness and sometimes I have on with both. Then sometimes I have fatigue with a flare and other times it's insomnia. I never know what the next flare will be like at all.

My flares, which are way too often, bring sore throat/neck pain which is almost entirely located on my right side. The pain goes into my eye, cheek and back of neck. The sore throat is accompanied by a very dry area that makes it feel like there is something stuck in my throat. I cannot talk for extended periods otherwise I lose my voice. My tongue and cheeks feel like they are on fire. I thought this feeling was thrush but I have never seen any white film and I don't really eat anything that would cause yeast overgrowth. Sometimes my mouth will burn for absolutely no reason (doesn't matter if I have eaten or not)and then it will disappear completely, for no obvious reason. My joints ache, stomach bloats, and I feel so tired (but cannot sleep) during these flare-ups as well.

Hi Charlamar, this is exactly what I go through plus sores/blisters in my mouth. I love spicy foods but during a flare, I cannot even drink coffee. Eating ketchup is painful. My voice gets real raspy, throat is dry and painful. I have started choking on food, water, milk, my pills, etc. I told my hubby I hope he is not around if I really have trouble while choking. He just looked at me like he was mad-that was while I was choking! I was treated for thrush but the problems didn't go away ( I had some whiteness in my mouth at the time). Yet, no doctor will say I have Sjogren's! I get so frustrated. I also have fibromyalgia so I have the severe fatigue and pain. I am now going through some other health issue that also causes the pain, fatigue and whatever. So, am I going to be going through 3x the fatigue? boo-hoo!

Sure do. I usually keep a drink with me if I am eating and sometimes take a bite of food leave it in my mouth and then a sip of water or milk to help get it down. I also have used Biotine spray and gel along with sports gum. Hope this is helpful.

You all told what my flares are like. I didn't know anyone understood any of that until I came on here. No one understands about the dry mouth and the trouble swallowing even the smallest of pills or a bite of food. No one understands where the raspy voice comes from when you're talking. I am so glad and sad at the same time to hear others say the same things I have problems with.

In a flare I always have extreme fatigue, pain in my joints (which differs from the pain I have from fibro), drier mouth and eyes, dry cough, and probably the worst part of a flare for me is the painful salivary glands. The glands in my cheeks, under my jaw, under my eyes hurt so bad that I am really incapacitated. I can't talk very much, sometimes all I want to eat is soft foods. I'll just lay on the couch with a heating pad wrapped around my neck and face, it's a pretty sight.

Hello Everyone, I was a member of this group for a while but was doing better, now I wish I had not unsubscribed! Anyway I was reading all of your post about flares and I find that all of your post are familiar to me. I have sjogrens, fibromyalgia, RA, diabetes, colitis, a hiatal hernia, chronic pain and now a fatty liver.

I never know which one is the cause of my fatigue, nausea, heartburn, diarrhea and just plain not feeling well. I don't think there is a way to say which one is causing what and it is so frustrating. After a endoscopy last week they tell me I have a fatty liver and need to exercise more, if I new how to do that I would. It is very frustrating not only for me but for my husband, who is a wonderful support for me.

Have any of you tried swimming and if so does it help or make it worse?

Here's hoping you are all having a good day!

DL, I can certainly identify with your post. I'm not gonna put my whole list of ailments but the osteo-arthritis aggrevates the rheumatoid arthritis, the SS aggrevates the asthma (as does the RA), the chronic headaches could be from RA, SS, taking Plaquenil or chronic allergies, the list goes on and on. Belly problems could be endometriosis, SS, RA, results of meds, irritable bowel... and yes, fatty liver too.

They keep telling me to try and get more exercise and try and lose weight. Hard to do when it makes the joints flare.

Swimming for me meant having to avoid pools with too much chlorine (sinuses), lakes and rivers (allergies) and cold water or getting cold getting out of what means flaring joints and possible pnemonia.

When the joints let me, i try and walk a lot. When the joints are bad, i have a secretary chair on wheels that i try and stretch and exercise in. It isn't enough but its a start.

I'd like to hear what you come up with - i need to add to my "exercise program" too.

As far as exercise one of my favorites has been doing some yoga with the wii fit. I go through and demo exercises, figure out which ones I can do and which ones i need to work up to and make a routine from that.

I used to swim a lot and loved it since it was was easier on my joints than walking but I can't handle the cold anymore. If you can handle it I would certainly try it. Maybe a water aerobics class?