I am 37 with Lupus. Doctors never told me whether it is mild or severe, cutaneous or not, and how it will evolve but i really want to know…
Every time an ulcer or a symptom occurs, i am full of fears of how might this might evolve in the future…
For example now, again with my spring flare, i had totally different symptoms from the previous years: while previous years were full of photosensitivity, difficulty to digest, some very localised and minor arthritis, general discomfort and anxiety and mouth ulcers, this year i have totally different symptoms: they concern my veins and vessels as well as my tendons, bursas and joints.
For the first time i am "crunching" all over, my knees, my elbow, my wrist, they produce this annoying noise. The skin next to my joints is as if it is empty (i guess bursitis) and my bones look as if they are popping out. I have difficulties to walk for more than 10 mins and have difficulties when using my hands. I have also signs of bad circulation: vessels all over my feet seem to burst, i had sudden and severe pains in my leg-veins and i am full of some white circular bumps, especially in the legs. However, i have much less photosensitivity and digestive issues.
What does this mean? how will the disease progress? will i need to replace joints with a surgery in some years' time or sooner or is it something that will disappear soon?
I would be happy to find out your stories about disease' progression, change of its characteristics with time as there is limited information on that over the internet and limited research in google scholar.
(Btw, i got lupus when i was 27 - had a wonderful remission period of 3 years - it was when i fell deeply in love with the most important person in my life, my partner - i was so happy, i could fly! i wish i could fall in love again with him from the beginning!)