I'm wondering if anyone in this group has had a diagnosis of Sjorgren's Disease since being diagnosed with ME/CFS? I was diagnosed with ME 35 years ago and with Sjorgren's eight years ago. My fatigue at the moment is the worst it has ever been and I'm having neurological symptoms. I recently had blood work for Vitamin B12 deficiency and as I have Sjorgren's, from what I'm reading, my results are considered borderline deficiency. I'm hoping to be able to get in to see a Rheumatologist in the next few months for further testing. Up until this point I've not had any symptoms relating to the Sjorgren's so I would be interested in hearing other people's experiences living with both ME and Sjorgren's.
Yes, Sjogrens diagnosis after an ME diagnosis.
(Bedbound , needing more peace - so keeping this brief-ish) ,
I wish you well re Rheumatologist support and further clarification.
-have found by trial and error that what might help improve (suppress) Sjoögrens fatigue appears to negatively impact my ME or vice versa, lowering quality of life.
Im allergic and chemical sensitive though. I dont tolerate drugs well. (Some simple off the shelf pain meds -for example Panadol can cause me to throw up until emptied out of my system).
Im hoping youll find something helpful.
Might be repeating myself here but I trialled 4 medications,
(through my Rheumatologist)
Plaquenil
Methotrexate, (sorry, its going back a while Im not sure of the first),
low dose Prednisone being the most successful short term. Long term it sadly didnt hold and there was a distinct downward curve after 3 to 4 weeks where my body had begun adjusting so it no longer had that magical positive effect for me.
I did my best -held out for 9 weeks trialling but the fatigue became v severe each time with various other side effects.
Heres hoping for you (fingers and toes crossed tigerlilliy)
