I have been dealing with SJS for about 3 1/2 years now. I have lost my sense of taste, have extreme dry mouth with trouble swallowing food (have lost 35+ pounds without trying to), and I cannot cry due to very dry, gritty-feeling eyes. My skin is getting progressively dryer and older looking.
Recently I noticed that I am wheezing. It comes from way deep down in my chest and is not relieved by coughing. Has anyone else had this happen and what may it mean? Is it likely another symptom connected with SJS?
How do you manage to stay calm with this disease. I am trying to stay positive but it seems as if my body is breaking down bit by bit. It's scary. Any helpful advice about the wheezing or about staying positive would be much appreciated. Thank you!
I have "had" asthma for many years, and of course wheezing is part of that.
Sjogrens was diagnosed 10 years ago, at age 53, and the rheumatologist didn't mention any connection to wheezing. Now I am on Advair inhaler, which has reduced my wheezing to about zero. My asthma doctor says my lungs are not working up to par, but it is such a relief to be able to breathe reliably...
I wonder if there is a connection? I got asthma symptoms as an adult, age 28 after I had been smoking for a number of years. But not everyone who smokes gets asthma.... I never had it as a child, even though my father smoked in the house until I was about 10.
Sjogrens has seemed a minor part of my problems. The asthma was reallly bad for years as I couldn't afford meds, but now is not much of an issue.
I have pain in my hands arms, shoulders, feet, back, etc. and was diagnosed with fibromyalgia, arthritis and repetitive stress syndrome. So much of my daily concerns are about these things, as it interferes with activities and the pain keeps me awake at times.
Mostly it all makes me tired and overwhelmed. When I first started having pain in my hands I was very upset. Now I know I can reduce the pain by accupressure and stretching, exercises and staying off the keyboard too much, and too much gardening , cooking, etc so it is just a nagging thing that never goes away, but I have learned to live with...
I began wheezing a few months ago, in bed. Then I was hospitalized for another reason, and they discovered I had very low oxygen levels in my blood. I quit smoking 25 years ago. But because I have very severe Sjogrens, I'm thinking maybe that caused it. I will now have to be on oxygen all the time. Do you know if you have low blood oxygen? They measure it when they put that clip on your index finger... The readout should above 92.