Hi, I’m new here, and wanted to sort of introduce myself.
I’ve been having the symptoms of this “flare” or what have
you since August. At first, when the joint pains in my feet developed, I
chalked it all up to just having come back from vacation in England and doing a
lot of walking. But they never got better (in fact, they just kept getting worse). Then the
foot/ankle/leg swelling started (or came back really, I’ve had it happen before on
several occasions). I also started having chest pains, and went to the doctor
first thinking it was my asthma acting up, and was put on a preventative asthma
med instead of just a rescue inhaler. But that never got any better, either.
Then I noticed that the rash I get on my legs sometimes started happening
again, and the rash on my scalp that I had noticed a couple of years ago
started back up again. Then the hand joint pain. That was the worst because I
do a lot of crocheting and it was so bad I couldn’t hold the hook. Then my
hands started swelling like my feet. So I started googling. My grandfather had
lupus and scleroderma (and actually passed away from complications from the
latter), and that’s what prompted me to look in that direction.
So back to the doctor I went. I listed all my symptoms and I
could see that she was dismissing them a normal things…I have asthma, I sit all
day at work, etc. And then I told her my grandfather had had lupus, and that
“my mom” thought I needed to be checked for that (I figured that would sound a
whole lot better than me coming across as a hypochondriac, haha). She was game,
mostly to humor me it seemed, so off to the lab I went.
A few days later I got a call and it was another
story. I knew the results weren’t normal when the nurse called and left a
message telling me to call back and she would “help me” with my lab results. My
ANA was positive with a 1:80 titer. The pattern was speckled. My sed rate was high,
at 23. My lymphocytes were low, and my neutrophils were high. A referral to a
rheumatologist was made. And I was called back in for more blood work. My rheumatoid
factor was normal, so that pretty much ruled out RA. My CRP was 15.3. I also went back in a week or so later and saw
the same doctor and was prescribed meloxicam and given a steroid shot (about a
week ago, and that’s starting to wear off). So on the 16th I have a
establishing appointment with a GP, and then on 12/9 I have my appointment with
the rheumatologist. The doctor I have been seeing has been very careful not to
come out and actually say that I have lupus, but she handed me an information
sheet on it with a look of sympathy, so I’m thinking that she’s assuming that’s
what I have. (My gf is a pharmacist and has read all my labs and knows my
symptoms, and she has come to that conclusion as well.) I have had an EKG and a lung function test,
and both of these came back normal, and my gf says my labs say that I have
really good kidney function, so that’s not an issue.
So since this whole thing, I’ve been trying to keep a log of
symptoms I have:
Malar rash (it comes and goes, and is usually vary faint,
although it was bright enough last Friday that people at work noticed.)
Joint pain, mostly in my hands and feet, although I have had
pain in my knees, ankles, hips, elbows, and wrists.
Muscle pain, usually in my legs and lower back.
Chest pain, usually when I breathe in deeply or exert myself
(and that can be as little exertion as walking)…it usually is in my upper chest,
around my pectoral area on both sides, and then I will sometimes get a sharp,
stabbing pain in my lower left ribcage. This pain also will migrate around to
Swelling in my feet, ankles, and legs.
Swelling in my hands in the morning.
Trouble concentrating, confusion, headaches, and
Rash on my scalp, and I think my hair is thinner than it
used to be.
Rash on my lower legs, which seems to really kick in when
And increased photosensitivity…not crazy sensitive, but I
burn a whole lot easier than I used to, and my face seems to act up when I’ve
been in the sun.
Extreme exhaustion at times…I now sometimes have to lie down
after a shower because it wears me out.
So here I am, waiting on a diagnosis.