Im 21 years old. I have celiac disease, hypermobile syndrome, asthma and raynauds.
Since I was 8 years old I’ve been experiencing flare ups of achy, stiff swollen joints. Before this year, I’d have a flare up once every two years or so and then I’d go away.
In October last year I started getting swollen, sore, stiff knees and fingers. This progressed to my toes, shoulders and hips. I developed a dry mouth when I was about 15 years old and ever since I have drunk about 1.2 gallons (4.5 liters) of water each day. In April this year, over night I developed dry, burning, gritty eyes. I also have nose ulcers, fatigue and vaginal dryness. My skin is not overly dry. I have joint pains but no muscle pains.
I have a positive ANA, in the past year my ESR has been elevated a few times. Everything else (full rheumatological work up) was negative.
I saw a rheumatologist who said she thought it was fibromyalgia (which I told her I disagreed with). She thought maybe drug induced lupus (although my recent flare up started before the medication). She thought reactive arthritis, but I’ve had no infection. She completely dismissed the possibility of it being Sjögren’s.
I got sent to an Ophthalmologist. He said I have severely dry eyes and scaring from the dryness. My schirmer test was normal but the orange and green dyes and whatever he could see when he looked at my eyes apparently told him they were very dry. He wanted to put plugs in but I wasn’t so keen. He said I definitely have Sjogrens with an overlap of Rheumatoid Arthritis.
I’m so confused. The rheumatologist is humming and harring and I’m getting worse. There are no other rheumatologists for at least a 5 hour drive away. The opthalmology will only treat my dry eyes but my joint problems are fatigue are my biggest complaints.
Any advice?
Oh and I have vasculitic rashes. My GP said they’re very common in autoimmune diseases. And my SSA and SSB were negative. But it was done after a course of prednisone and I was completely symptom free at the time. The rheumatologist said the prednisone would have had an impact on my blood test results, yet she still ordered them and now she won’t reorder them!
If you want to feel better, you will have to drive the distance to see another rheumatologist. No one here can solve your problem. You need a doctor who will work with you.