I started treatment for SLE 2 months ago following 2 positive tests, told it was to be treated as mild/borderline at the time and was started on Hydroxychloriquine it got a bit worse and was started on steroids and more pain relief.
Previous to this was diagnosed with fibromyalgia and diverticular disease and had quite a few admissions due to very elevated ESR and CRP, it was noted after a while I always had accompanying joint inflammation ( it was being treated as flare of my bowel problems at the time) and this started my visits to rheumatologist.
On reading more about SLE I think I have actually had it for 20 years ! Following the birth of my son I became very unwell and literally could not get out of bed (very fit prior to this with 5 young children and kept and bred over 20 horses!) my hair was falling out, I had rashes to face and blistered fingers and toes. I developed antibody/antigen and was told I had glandular fever 3 times over the next 18-24 months. I also started to suffer from severe migraines. Also have developed various allergies to food and medication over the years which hospitalised me on one occasion .
Over the years I have had 'flares' and periods of exhaustion . Over times of illness investigations showed scarring of a kidney, lesions on my liver and an admission for clotting issue following severe chest pains.
My question is am I just linking this history up and blaming it on SLE or does anyone else have a lengthy or similar lead up ?
ALSO (sorry , lengthy) I have been off work for 2 months and absolutely desperate to get back to work . I have a mentally very demanding job and a 3 hour commuting time . I am still so tired and cognitive function can be awful( mix words, lose words, very forgetful, I had to write this mail down on paper over a day as could not just put thoughts down) my headaches and feeling of faintness and loss of balance have started again since my steroid dose has been lowered BUT I just want to get back, even if part time. The big question is how long does it take people to get back to work and to feel even relatively better ?
I am so sorry this is long and rambling