Questions about Sjogrens
 

Hello, I'm so glad I found this site! I'm having problems with my chest/lungs today and wanted to see if anyone else ever has this. I have a new rheumatologist who I have seen twice so far. First visit, did labs, test for Sjogrens. He said Sjogrens positive. As for lupus, he said he wouldn’t diagnosis me with that w/o a 5 year history (or so) of problems. Gives me plaquenil, back in 2 months. I tried the medicine for almost a week but suffered horrible headaches. Not taking that.
About a month after that, I woke one night with pain in my stomach. I stood up and got leg and arm weakness, like I weighed 500 pounds, with feeling SO hot, sweating really bad and flushed. Went back to bed and woke up better but not normal. Since then I'm really dizzy, not visually seeing things spin but inside my head feels dizzy. I have had severe fatigue for a long time but its worse now.
Then, it was a hot day and I was outside for about an hour shooting my bow and I got really weak and nauseous and dizzy, short of breath kind of with a strange feeling in my lungs. No wheezing or anything like that. I was exhausted and felt like passing out. Took a cool shower and was useless the rest of the day. My husband said I was really pale. My head felt pressured, behind my eyes felt like that and I had whooshing in my ears with my heartbeat loud and I could feel my inner ears pulsating. I had to lay down the rest of the day. Since then, I feel like I took Benadryl or Nyquil medicine that makes you feel sleepy and your body feels floaty. So, I went back for a second visit. He wants an MRI and some more blood work.
Can someone please tell me if Sjogren's alone can be making me feel this way? I also would like to know if anyone experiences problems with their chest/lungs? I woke this morning feeling like I have bronchitis or something. When I breathe in my lungs feel congested but I have no congestion. They aren't tight, I can breathe. They are also burning, like when you're sick with a chest cold and your breath and chest feel on fire kind of. Does anyone with Sjogrens have this or am I just going completely crazy?

Welcome Shelly44. :Wave-Hello:

Someone will be along to help.

I was dx'd with Sjogrens about two years ago. I haven't had any lung issues, but have heard that people with this illness, can sometimes be more prone to them. I have had more sinus infections than usual, and some of them have led to Bronchitis. And, sinus issues and bronchitis are definitely said to be an issue with those suffering fromSS, due to the dryness.

I don't think it would hurt anything to use saline spray daily. If you suspect at all that you have bronchitis...get to a doctor right away!!! (Either your rheumatologist or your GP)

Have you been to the Sjogren Society website? It's helpful. Many doctors were taught that SS is a disease of simply dry eyes and mouth. It isn't always this simple. If your rheumie thinks like this, it could be a problem.

I have lupus as well. I think with this and probably all autoimmune illnesses, it's super important to eat right, avoid sugar, avoid stress and when facing unavoidable stress...learn to manage it well, and avoid people with colds, etc. and wash your hands often. Recent popular literature says that a gluten free diet is helpful, so I have been doing that as well.

These types of things have helped me with both my lupus and SS.

I have had issues with this annoying syndrome since my teens, with a long break when it went into remission until my hormones changed again. Mostly having issues with my eyes and throat, but I have had the symptoms you described before.

Turns out I had severe blood pressure issues in these moments, either way too low or relatively high, which both caused the dizziness and whoosing in my ears and the feeling as if air either couldn't get into or out of my lungs. I was told low and high blood pressures, even alternating, happen a lot with this.

As for the lungs feeling dry or weird, yes, I get this every now and then. As we do sauna and steambaths a lot, O get enough moist intzo my lungs, but oherwise inhalation helped in times where I couldn't do either. Also, drinking a lot is advisable despite the edema you may have. I used to think I needed to drink less with my swollen feet but it turned out it got better when I drank more. Probably because the kindneys got more active.

Gluten free has done nothing to me but make me depressive and my food taste bad, but going down on sugar, using sweeteners where possible, hads helped with the congestions in my nose and throat not being so bad anymore.

Welcome Lwaxana. :Wave-Hello: