About 10 years ago i was diagnosed with asthma, lactose intolerance and IBS in my late teens. I muddled through, managing the symptoms as they came and changing my diet. This did help slightly but I have always still had flare ups. Fast forward to 2020, i lost a family member to the big c. Soon after i started flaring up with my rashes on my scalp, ears and face. After endless creams, wrong diagnosis skin and denied requests, i was finally referred to the dermatologist in October2022. As soon as I walked in, she almost immediately said the lesions and rash on my face looked like lupus malar rash and discoid lesions. I started using tacrolimus and dermovate which immediately helped with redness, soreness and itchiness. However my skin is now darker where the lesions once were. This is taking a toll on my self-esteem and confidence. I had a skin biopsy and bloods taken in Feb 2023 and now awaiting my appointment for next month for results. To top it off, i broke my foot a year ago after falling down stairs and it has not healed well. I get swelling in my ankle and I still need a crutch to walk. My orthopaedic was so confused at my unjury not healing that he referred me to rheumatology which on NHS was about 6months from my referral date. My anxiety is through the roof as I am being told I may not be able to continue my job and would need to think of changing career which is devastating to me. My whole life has been stopped because of the injury to my foot. Since this i am also experiencing much more joint pain and fatigue. Just so scared about the actual diagnosis and how its going to affect my future 😪
Awaiting diagnosis : About 10 years ago i was... - LUPUS UK
Awaiting diagnosis
Quuen I’m so sorry about your foot and the skin lesions. It’s understandable how worried you must be waiting for answers. I have SLE while my mother has discoid lupus so we know what you’re going through. As far as the skin goes, what’s particularly important is to wear high factor sun cream- factor 50+ as you want to stop further damage. My mother had alopecia diagnosed but actually it was discoid lupus on her scalp and years of not wearing a hat meant not not all areas had the hair grow back. Most did once she started using one and all the areas on her face healed and faded so that you can’t see anything of the discoid lupus now. As for the injury. It is common to have prolonged soft tissue injury recovery with lupus, which is a connective tissue disease. It’s also easier to injure yourself, I’ve found. I haven’t worked out how to make this better other than rest and elevate the leg to keep swelling down, and try to avoid injury. I injured one leg that I never rested and it swells easily years later and causes pain and I have prescription support stockings that help a lot. Hopefully you won’t be in that position. Good luck and sending a hug.
I had symptoms of connective tissue disorder over last decade. Particularly arthritis starting 2019. Close family died to cancer early 2020, then two months later I caught covid..then photosensitivity, gut changes, rashes eye issues. After strong positive antinuclear antibody (ANA) test result, was diagnosed with UCTD (specific antibody tests were negative so not diagnosed with SLE but treatment the same). A few months in on hydrochloroquine most symptoms went. Once treated things improve.Welcome, take care and all the best in getting answers quickly
It really is so hard to accept. I have started a diary this month to keep track to bring to my results appointment next month. Thank you!
This sounds so similar to what i am going through! Thank you sharing and for the positive encouragement that things will improve!
Trying to get a diagnosis
Confused & frustrated about getting a diagnosis
Iron Deficiency
Feel very demoralised
