Apologies in advance for long post.
I saw my rheumatologist on Friday for a check up for my autoimmune eosinophilic fasciitis (connective tissue disorder).
I have been suffering symptoms of potential Sjögren’s for the past three years, but it’s only in the past six months that I’ve put the pieces together.
My rheumatologist told me about 24 months ago that he thought I have ME and we’ve now got to the point of onward referral.
However, for the past 12 months I’ve been having really bad dryness everywhere and both my GP and optician have said they think it’s Sjögren’s not ME.
I gave my rheumatologist a list of 56 different symptoms on Friday, which are absolutely debilitating, to the point of ruining my life, but he won’t even consider Sjögren’s and insists it’s ME.
He said that he ran a Sjögren’s test 3 years ago and it showed nothing.
Has anyone else had this experience? It’s been going on for so long, and it’s so bad that I’m worried I might have MS or a brain tumour and I feel like no-one is listening to me.
How can I get a diagnosis if my rheumatologist won’t believe me!?!
Edit to add:- I have very bad PEM. My GP is referring me for ME/CFS diagnosis but I don’t have a clue who he is referring me to as there don’t seem to be many places that diagnose it. Does anyone know of any private doctors/hospitals in the UK who diagnose ME/CFS?
It sounds strange to say, but I actually felt better when I was being treated for bowel cancer than I do right now. My GP is convinced that it all stems from there as I had a lot of lymph nodes removed. Since then I’ve developed EF and fibromyalgia.
From reading the comments below, I guess there is not really a ‘win’ whatever it is. There is no cure for either, but I think I just want to know what is wrong with me - I sometimes think I’m crazy, that it can’t actually be possible to have all the symptoms I have, but I have them. My wonderful GP has documented them all over the years and is a brilliant advocate for me and always fights my corner.
I just can’t believe this is what my life is. I don’t want to believe that things will never be better. I’m so sick of it. There has to be a way to fix it, even if it’s not through conventional medicine. I’m just ranting now, sorry.