Hi @Megan17 and others on this thread
I had my Schirmer's yesterday at the eye clinic. The doctor didn't actually bother measuring the result. He just laughed and said 'There you go, you can see there aren't many tears being produced there!' He was quite jovial. The end of the paper was just wet. He said he thought I have Sjogrens, based on eyes and my dry mouth. However I'm not sure he would be the person to diagnose. I'll wait to see what his letter to my GP says. I'm awaiting a rheumatologist referral.
He offered to put in punctual plugs at the appointment yesterday, but I said I'd rather wait and see how I get on with the new drops. It was nice to see a doctor who listened and took my symptoms seriously and on face value (always feels so validating).
I've been thinking back now just how long I've had dry eyes and dry mouth. It's a long time! It probably started when my migraines did, around the age of 30 (I'm 49 now). I keep thinking of the title of this thread 'probably Sjogrens all along'. In my case I've got a thyroid thing going on too, and I am wondering if ME was ever really part of the picture.
My PEM has changed recently too. I seem to get migraines now if I do too much. When I was first ill with ?ME, I definitely has Classic PEM, it was what convinced me I had ME. Maybe I had ME for 3 years as part of the whole thing, that 3 year ME weird one...now it's back to Sjogrens and Hashimotos, possibly.
I've been reading about Sjogrens and the need to exercise and balancing exercise and rest. I know long periods of inactivity don't suit me, but I can't overdo my activity either, again this makes me think I'm Sjogrens and not ME. But maybe I'm Sjogrens and ME and Hashis. As illnesses go, that doesn't seem too bad a list in some ways.
How many people on here might have Sjogrens and not ME, or another, undiagnosed autoimmune disease I wonder? Quite a few seem to have ME along with other auto immune diseases and I wonder why keep the ME diagnosis, but that's for anther thread I think. Complicated...
The ME that is described by Ramsays and Dowsett I believe referred to it as a:
Neurological
Autoimmune
Immunological
Mitochondrial
Musuloskeletal
Pain
Endocrine
Etc.
Disease....the initial hit to the CNS disturbes all bodily systems.....
Thats why I believe the list of comorbidities is extensive.....
Sjorgens has huge overlapp with ME but due to the inability to diagnose quickly or the marker to show up...is a big problem....as like people I know with more severe form of SS have more permanent damage....because of the inability to diagnose and treat in a timely fashion....