I have been feeling rubbish for years. I've always had to pace myself and frequently feel very run down as if I'm running on empty. Sore throat, always feeling like I'm fighting an infection , low grade temp, what I considered wide spread inflammation in the body in the form of pain etc. This has always been attributed to some surgery (which included the removal of the spleen) I had several years ago and tbh I believed that too.
These last 3 months have been worse though - I haven't had any let up with aching muscles and overwhelming exhaustion. Usually I can get myself back on track / damage limitation by sleeping 10 hours overnight, napping in the day, cutting back on socialising and basically just doing the basic eating sleeping resting etc. This time it hasn't helped at all.
I've been reading about fibromyalgia and chronic fatigue syndrome and recently wondering if I have something underlying. The symptoms however don't seem to fit. Went to the GP yesterday and it was a locum Doctor. She didn't know about my previous surgery so looked at it all objectively. I said to her that I know the surgery was major and I had a really tough 3-4 years after but things did start to settle. However 7 years on I thought I would be a lot better by now. She agreed. She said they'll run bloods and check for auto immune diseases. She asked about family history - mum suffers from
Coeliac and Rheumatoid arthritis. She mentioned lupus specifically a few times.
Since coming home I've read up on it - I only knew that it was your immune system attacking itself and I've only
heard of it in severe forms. However going through the list of symptoms I was surprised how close it hit home.
Apart from the overwhelming debilitating exhaustion and muscle pain , I've had the following :
- 2 unexplained episodes of rash covering my whole body and affecting the joints. First time was worse and lasted 3 weeks. They just kept telling me to take antihistamines which did help albeit slowly
- vaginal dystrophy (dryness)
- reoccurring UTI's with multi resistant bugs. After bladder washing treatment, systems still persisted and this was diagnosed as interstitial cystitis (bladder tissue inflammation)
- 2 miscarriages
- unexplained episode of very sore knees for over 4 weeks
- inflamed red skin on face
- ongoing hair loss
- always have very cold feet
- sun sensitivity
I'm going back for bloods next week.
Does this sound like lupus to you? Albeit mild.
Please tell me how you were diagnosed and how long the process took