I'm a newbie...and I'm frustrated.

Well, I've been lurking here for a few weeks. I haven't been feeling well in a long time, and every week, I get worse and get a new symptom it seems.


I guess I'll give you all a brief rundown. I'm 3 weeks shy of turning 27. I don't have a lupus diagnosis. Or any diagnosis for that matter. I've always not felt good. As a teen, I had pretty bad joint pain at times. This has continued throughout the years. I would have flares of what I believed to be IBS. I went through some really painful stuff, but the doctor said it was just a virus. I apparently had a virus that lasted years. I've had a sun sensitivity for years. At first, it was more like the reaction that comes along with photo-contact dermatitis. Now, it's hives and angioedema. yay! (sarcasm) I've never had hives before, and I've had these for longer than a week. And my skin has become extremely sensitive, so anything that touches it causes a welt and extreme itchiness. I went to the ER last week because my lip had swollen so much and the hives weren't going away...oh, and because I had the worst acid reflux attack I've ever had.

Let's see what else I've experienced. Difficulty swallowing, excessive urination, swollen parotid glands, extreme fatigue, muscle aches, chest tightness, swore jaw and gums, random swollen lymph nodes, excessive thirst. I thought I had diabetes at one point because I couldnt stay out of the restroom. I was going around 60 times a day. Went to an urgent care place. Went to a GP. Went to a urologist. The urologist referred me to a Rheumatologist. My appt is on the 16th. I've been waiting so long for this appt, and I'm feeling so bad lately, that I'm thinking I won't make it there.

I'm pretty scared, but I'm mostly tired of feeling ill. I don't know if I have lupus. I won't be devastated if i do. I'd be quite relieved to know that there is something wrong with me, and that it's not all in my head....and that I'm not a hypochondriac nor exaggerating how my symptoms.

also, I had a some tests done at my GP 2 weeks ago. Like all the typical autoimmune tests. They all came out normal, and the results were faxed to the rheumy that I'll be seeing. And I do have family with autoimmune disorders. My dad and a few members of his family have gout. My mom's sister has sjogren's and ulcerative colitis. And another one of her sisters had a thyroid problem. My mom, the aunt with ss/uc, and my grandmother have mitral valve prolapse.

Well, that's my story.

Thanks okie.

I'm hoping the rheumy will be unlike the rest of the doctors in my life.

Hi and welcome. I'm sorry you have felt sick for so long and still don't have a diagnosis. Being in diagnosis limb is a difficult place to be and lots of us have been there so we understand. I hope your rheumatologist appointment goes well. Make sure you write down every symptom, even the ones that might seem small or unrelated. Also, please check out the resource section on this forum - there is a list there of helpful hints for new members. I hope you get a great rheumatologist who can give you some idea as to what might be causing your symptoms and I hope you'll keep us updated on what you find out. It can be so frustrating when you feel so rotten but nothing much turns up on you labs. For a while, most of my labs were normal, but over time I had more and more abnormal results which finally helped me get a diagnosis. I'm glad you joined us. Please ask any questions that you have - we have a great group of very supporting people here.