Hey, I am a 20 year old Female and new to this I just wondered if anyone has experienced the same as me in some way. Last September I became ill with symptoms very similar to the flu apart from I had no runny nose or sore throat or cough.
Under my armpits my lymph nodes were agony and I had lumps at the tops of my arms further up quite a bit above the elbow that were rock solid and hot to touch with red marks that became worse. They should normally be really soft.
I was sleeping all the time I’d open my eyes and would fall straight back asleep and that’s not like me at all. I went back and fourth to my GP who tested for Lymes disease, cellulitis and they came back normal.
I got antibiotics anyway and I was gradually getting way worse. I then got referred into hospital and spent a week there. They took so many bloods and they were all coming back normal a part from my inflammation markers were high. The hospital then discharged me on 30mg of prednisolone steroids and referred me to dermatology because they’d taken a skin biopsy to check about the inflammation in my arms. They explained I was a mystery and thought it was an infection.
I was then back to normal after a month I was like my old self, I was so happy I thought that was it and the steroids had worked. Then I decreased my steroids gradually and on December 23rd I’d completed the course of steroids. Then at the start of January it started all over again but 10 times worse. I became so ill I ended up in A&E but they couldn’t do anything because I was under a consultant. I was then going back and forth to dermatology for 4 months and they kept sending me away because they just didn’t know what was wrong and they just thought it was a really bad infection but by this time it was 9 months down the line and I was still ill. Then they referred me back to rheumatology.
When I seen the rheumatology consultant I explained my situation from the very beginning and he explained that if it was an infection the steroids would’ve reacted to this and I would’ve been so so ill. However I became way better on the steroids and when they were lowered I became ill so he explained that that’s the signs of an auto immune disease.
He then said that without looking at my bloods all my symptoms are showing all Lupus. He explained that he’ll do the tests but he feels they are going to come back negative but he says he has 5 or more patients who do have lupus but their tests do still come back negative.
He was right my tests did come back negative. However he still has treated me for lupus and I begun methotrexate 8 weeks ago. I still have a long way to go I’m still quite ill but I’m managing it and pushing myself to do things. The methotrexate has given me more energy and I’m still on 12.5 mg of steroids. I just feel sometimes I can’t say I have lupus because my tests came back negative but everyone I’ve spoken to has been lovely and said I have every right to say I have lupus because only once your bloods can come back positive in the whole time you have lupus. I just wanted other people’s opinions?
These are my symptoms I’ve had the whole year
Legs arms in agony and swollen lumps in my arms
Chest pains - an also to point I can't breathe like I struggle it's similar to like a panic attack but I never used to ever get panic attacks.
Joint pain/muscle pain to point can't move
Pins and needles
headaches really bad
Sensitivity to light
Whiteness in face and fingers
Urine infections for a while
Change in moods - angry, upset, emotional, worrying about stuff is never normally worry about.
When Lowering steroids feel really ill