Fibro with Sjogrens

Status
Not open for further replies.

CreativeOne

Member
Joined
Nov 27, 2021
Messages
18
Reason
DX FIBRO
Diagnosis
10/2011
Country
US
State
NV
I have had dry mouth and eyes, and altered smell, bad taste in my mouth for a long while, then me ANA showed sS-A antibodies indicating Sjogrens, so the ENT will add it to my diagnosis and try to refer me back into a local Rheumatologist again for care. I have also developed stuff ankles daily. I do not know where Fibro may end and Sjogrens complications could begin. Are others dealing with this same diagnostic set? How do you cope?
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
2,175
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
I have had dry mouth and eyes, and altered smell, bad taste in my mouth for a long while, then me ANA showed sS-A antibodies indicating Sjogrens, so the ENT will add it to my diagnosis and try to refer me back into a local Rheumatologist again for care. I have also developed stuff ankles daily. I do not know where Fibro may end and Sjogrens complications could begin. Are others dealing with this same diagnostic set? How do you cope?
Hi Cre8ive1 - I'm surprised that SS-A antibodies next to these symptom were enough and how they know it isn't Lupus (SLE). I had to get a salivary gland biopsy as well and that was kind of negative (only stage 2 and that according to my rheum wasn't enough).
This was ongoing whilst I was in a fibro/rheum clinic and the chief rheum. (and the others) said it wouldn't make the least difference whether I had Sjögren's as well as fibro or not. I 'just' have to sort out how to improve and live with the symptoms best. I did educate myself about it quite a bit, as I was uneasy about diagnosis and treatment. However I decided I wouldn't be taking any appropriate meds anyway, I'd just be continuing treating each symptom individually.
The only difference that was clear to me was the 5% chance of getting NHL tumours, which I knew I'd have to keep an eye on. But with a probably harmless spinal tumour anyway, I just have to be on my toes a bit more.
Due to the jabs I've ended up finding that all my previous oversensitivities are better explained and ended up in MCAS, which would be immune system, but not (necessarily) autoimmune. Knowing this I can pretty easily distinguish all 25 new/changed symptoms except the fatigue, which has just got considerably worse. Interestingly many of my supps help fibro and MCAS, even/esp. my mainstay supp, GABA, which "no one" knows about for either fibro nor MCAS. Same as applied for MCAS though, altho there is even less overlap than with Sjögren's.
 
Last edited:
Status
Not open for further replies.
Top