I have been reading up on some of these threads and am incredibly impressed on how well educated you all are about your illnesses. I currently have no diagnosis. My symptoms are similar to Lupus but are as of yet unconfirmed. I would like to share my story and ask for opionions of what the next logical steps might be.
My symptoms started in the 8th month of my pregnancy which was well over two years ago. All of my sumptoms are common in pregnancy so I assumed they were normal, however, once I gave birth they continued and are still a problem to this day.
First my hands swelled up and became painful, not just the knuckle but the whole hand and wrist. The pain was (and still is) the worst in the morning or when I am too sedentary. Then my stomache began bothering me quite a bit. Gas, constipation, bloating, nausea, and then acute pain after eating.
Although I had no risk factors and was actually a bit underweight when I became pregnant I developed gestational diabetes so I was pretty miserable and the hands and stomach thing were just another thing that was bothering me at the time. Over the past two years these symptoms have come and gone and others have popped up. I now have what appears to be a malar rash as well as a similar rash on my chest. I have always been sun sensitive (I am a redhead) so it is unclear if my rash gets worse in sunlight because I always turn pink even with sunscreen. I generally avoid midday sun at all costs.
For the past six months I experience daily... pain in my hands (tendons and joints) feet (mainly behind the big toes) Knees, elbows, lower back and jaw. My stomach hurts almost every day although occasionally I have a good day. I am ALWAYS constipated but then randomly have diarrhea out of the blue a few times a month. My face is perpetually red and blotchy with a slightly rough texture mostly on cheeks but one spot directly in center of chin as well. Also occassionally on ears and neck and always on chest as well. Random hives anywhere on body that come and go. Itchy sore eyes. Small painless mouth sores inside cheeks and lips and chronic nose sore on my septum... Worst thing is constant fatigue.
I have been through two primary care doctors and have now seen the rheumatologist twice. They have all tested me for Lupus, Lymes, and Rheumatoid Arthritis. My Rheumy is frustrated and confused. She is convinced something autoimmune is happening, she feels I am quite puffy and my joints feel swollen to her (i've never noticed swelling other than my fingers but I'm not particularly observant) She doesn't like the rash at all and my GI doc has tested me for celiac, gallbladder, H pylori, etc. He diagnosed me with IBS and Fructose malapsorption and put me on a low Fodmap diet. It helps although it is not a cure. My Rheumy has done over 30 different tests, everything from hormones and thyroid to immunofluorescence. Everything comes back normal except for elevated Chloride which doesn't indicate anything by itself. Last week my mother suddenly came down with the same symptoms in her hands and joints. She already has rosacea and Raynauds. My Rheumy is concerned it might be an infectious illness and sent off for a bunch of tests looking for Viruses as welll as ANOTHER lupus test.
Despite all these negative tests I feel like crap every day, the doctor knows I'm sick but is frustrated, I"m frustrated, Ready to try a naturopath, aliens, or a witch doctor. I will take anything no matter how strange it sounds to make this go away, I have a two year old to care for. i am currently on Etodalac, to try and reduce the inflammation. Been on it two months and it has done nothing.
Sorry for the long post, any suggestions are welcome and appreciated