Undifferentiated Connective Tissue Disease & Lupus.............WHAT?!

Well aint that a bitch! So I got in to see Rheumoatologist about a month ago. She asked lots of questions and drew some blood and scheduled me back for results 2 weeks later. Those 2 weeks I held it together pretty well as far as I'm concerned. It wasn't until the last few days that I couldn't take it any longer and went to the library and got every book on every autoimmune disease that I could find. I skimmed the books, reading the symptoms, trying to find something that sounded like me. The fibromyalgia symptoms were the closest. In fact I had all but 1 symptom of fibromyalgia.....the headaches. So I was pretty confident that the Dr. was going to say fibro. But then again, what about that Rheumatoid Factor that was high?

Lets go back. My family dr. did some bloodwork because she thought I had fibromyalgia but ran some bloodwork to rule out any other possibility for my muscle and joint pain and fatigue and alarmingly scarry memory problems. Well the bloodwork came back and the only thing that was off was the Rheumatiod Factor, which is an antibody. Mine was 111 and normal is less than 20. So that's when she sent me to the Rheumatologist.

OK back to the Rheumatologist. A few weeks ago I went back for my blood test results and here's what the Dr. had to say. She said that my Rheumatoid Factor was still elevated, and my ANA was positive and a few other things were off, my Vitamin D was low. She went on to explain that I was positive for Lupus, but that it is borderline at this point. I also have Undifferentiated Connective Tissue Disease. HUH?! She wrote it down for me because I had never heard of it and was pretty taken aback. She said that I wouldn't find much info on the internet either. Great! I was too shocked to ask any questions. My mind was blank. She said that the medication for Lupus and UCTD is the same and she wanted to start me on Plaquanil. She asked if the Tramadol was continuing to help the pain, which it is, so she wrote me a refill on that.

Now normally I would go home and google the hell out of the new prescription for Plaquanil. I would read the side effects and scare myself out of taking it. But quite frankly the word Lupus was much scarrier to me than any prescription for it! I filled it immediately. I only know 1 person with Lupus, and she is in terrible shape. Dharma I miss you my friend!

So I've been on the plaquanil for 2 weeks now and up until today I thought it was really working. Today I woke up and feel god aweful. My elbows, fingers, ankles, neck and hips are KILLING me. I couldn't even bend my left ankle this morning. My whole body is aching. The thigh pain (burning aching pain) that I've had since last summer is gone so I do think the plaquanil is working, just not 100% yet. I was told it takes 6 weeks to work, so I was surprised that after just a week I was starting to see improvement. I'm sure all this pain today has something to do with the fact that the weather changed dramatically today. The last few days we've been in the 80's and sunny. Today we're back into the high 60's and it's gray and rainy.

I'm having a few other issues that might be related to these newly diagnosed diseases, which hopefully I'll remember to ask about. I've got a few patches on me, one on my inner left thigh, and one on my right hip area, that look like a patch of broken blood vessels? It's hard to explain but it kinda looks almost like a bruise except it's not bruised, but a cluster of tiny reddish purple dots. The other thing is my eyes. 2 months ago my left eye looked like it had pink eye, but only for a day, and I've been having problems with them ever since. When I wake up in the morning my eyes have so much goop in them. I would normally chalk it up to allergies, only I don't have any other allergy syptoms at all. The plaquanil does seem to be helping with the hives on my face too. I was getting at least 1 hive everyday on my face. Why my face of all places?!

Now here's the reallly frustrating part! At first I just focused on the lupus diagnosis because I kinda knew what Lupus is and I know it's not good. I googled about that and got familiar. But then I started googling Undifferentiated Connective Tissue Disease because that was the other half of my diagnosis and I didn't have a clue what that was. I just assumed it meant that the Dr. didn't know what it was, I mean that's what the title sounds like! Turns out it's an actual autoimmune disease and there isn't a whole lot of info out there about it. And today I went to Amazon to see about ordering a book about it and there isn't a single book about it! How am I supposed to understand what's going on with me if nobody else does either?!

So that's where I'm at today. Pretty confussed about everything. I wish that I had someone to relate too ya know. I wish I had someone to talk to that understood what I'm going through and could say, yea I know, me too! I feel so alone in this.

j