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New Member

Date Joined Mar 2017
Total Posts : 2
   Posted 3/15/2017 10:41 PM (GMT -6)   
I'm new to the forum but not to sjogrens. I was diagnosed in 2007 and until 2 months ago my symptoms were controlled and bearable. The bottom dropped out and now and I don't know which problem is the worst. One of the newest symptoms started right at two months ago when everything started getting horrible. It's this "phantom smell". For about a month I had it nonstop. If I start to feel a little better with other symptoms the smell eases off but the minute the sjogrens fatigue hits the smell comes back along with the worst dry eyes I've ever experienced. Has anyone else experienced this phantom smell. I can't even describe it. It makes me nauseous and wears me down. It's like stacking one more thing on top of another 20 more that I don't know what to do with. You keep thinking....if only I could get rid of this problem then maybe I could handle the others. Any help would be appreciated.

Veteran Member

Date Joined May 2005
Total Posts : 7720
   Posted 3/16/2017 12:42 PM (GMT -6)   
Have you consulted with your rheumatologist about the phantom smell? I wonder if your Sjogren's is causing some inflammation that isn't being controlled. What are your other symptoms? What medications/treatments are in play? Remember, nothing happens by itself, the collection of symptoms is what really tells us what is going on with the disease.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
"Life is far too important to be taken seriously." - Oscar Wilde

New Member

Date Joined Apr 2017
Total Posts : 8
   Posted 4/16/2017 7:08 PM (GMT -6)   
I accidentally unsubscribed here, not sure how I clicked the wrong link in the email.
My mom had the smell, but it was related to a wound she got from not getting out of bed. I have not had that situation as of yet, but will write you if it happens. I was just diagnosed with Sjogrens. Feel better.

Post Edited (Life4Me) : 4/16/2017 6:11:58 PM (GMT-6)

New Member

Date Joined Apr 2017
Total Posts : 14
   Posted 4/17/2017 9:53 PM (GMT -6)   
I've had quite a few phantom smells too lately. I have primary Sjogren's. I haven't had a chance to ask my rheumy about it yet. Please let me know if you find anything out about this!
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