Hi Paperbagprincess, hi everyone! I am 37 and was diagnosed with UCTD in November last year and since then I have been on Plaquenil, first 400mg then 300mg and Prednison (first 5mg, then 10mg then 15mg, then tapered of at the end of May, then symptoms came again and I am on 5mg since beginning of August). I also take Pilocarpin for my sicca symptoms as well as ointments and artificial tears for my eyes. I take multi-vitamin, Omega 3, Calcium+vitD. I eat healthy (but not gluten-free or strict sugar-free) and do yoga regularly (mild forms, such as yin, therapeutic, restorative, etc).
My symptoms included pain in the hands, wrists, elbows, feet, ankles and knees, "funny" ("electrical") feeling in forearms and feet, numbness (especially during the night), carpal syndrome (I wear brace), Raynaud, net-like rash, sicca. At the beginning, before therapy was introduced I also had malar rash, was photosensitive, had oral aphtae and ulcers, and had very strange swelling of my face and lips.
At the time of diagnosis, I had low C3 and ANA IFA speckled positive. All other tests were negative and have remained so. ANA IFA was also negative in April (I was in remission at that time).
Lately, I also suffer from dizziness - all the vestibular tests are ok, MRI is ok. It feels like experiencing an earthquake or living on the boat. I was diagnosed in Europe and moved to the US few months ago.
Since 2009 (or maybe even earlier), I have been experiencing extreme fatigue and brain fog. I have been fatigued all the time. Fatigue completely ruined my life - at that moment I thought I was depressed, my psychiatrist diagnosed me with reactive depression, but she said that it was very atypical. She put me on anti-depressants for half-a-year, which made me feel much worse. In the process, I was diagnosed with PTSD and went through CBT and EMDR. However, fatigue persisted after therapy was successfully completed. Sun really makes me fatigued and weak and I get all red (after the diagnosis I have been using spf 100 and protective clothes).
After my previous marriage broke down due to problems with infertility and my constant fatigue (my ex was an overachiever and I couldn't keep up with his pacing), I found a wonderful man, got married again. We generally share tasks like cleaning, etc. He is very gentle and supportive and does the housework when I feel too weak to do it myself.
I have just started another thread, hoping that someone will answer me if it is possible to combine this disease and carrier, or we all end up working from home and spending most of our time in bed :-( This really saddens me and make me frustrated and helpless. Hiking used to put me in the balance, but I find it hard to hike, especially in the sun and I am usually fatigued for days afterwards.
Explaining to other people what is this mysterious thing that I live with was another painful experience. People just see you looking ok and assume that you are fine (even when you hardly got up from the bed in the morning that day). So many people told me that "it is just stress - everything is in your head". Many times even doctors were reluctant and I have a phobia that they will think that I have some factitious disorder.