Question: I am a 40 year-old female with a five year history of chronic medical problems. It started with Raynaud's in my hands after getting out of the shower or going into the cold. I then lost a lot of weight (50 lbs) without trying. About four years ago I started having chronic joint pain, mainly in the hips and shoulders. My hands get incredibly stiff in the morning. I was diagnosed with fibromyalgia at that point, but I feel there is more going on. I have seen two rheumatologists. I have had lots of tests and have developed many other problems since. Here is a brief list:

C reactive protein: elevated a few times, but sometimes normal
ANA: was positive on last test at 1:40, but low titer
Thyroglobulin: very high, I was diagnosed hypothyroid at age 20
hemoglobin: has been as low as 7, right now is at 10.1
Rheumatoid factor negative
Anti-DNA elevated, read as an equivocal result
RNP was elevated, 5 times normal levels

Since the start of this, I have developed problems in multiple systems. I was diagnosed with gastroparesis, livedo reticularis, migraines, hypertension, anemia (I had a hysterectomy in 2009 which helped somewhat, but my Hgb still hovers at about 10, even with iron supplements. I have photosensitivity and get rashes. My skin (especially my legs) turn an ugly reddish purple when I sit with my legs down. I have very hypermobile joints, especially elbows and hips. I develop oral thrush frequently. My last two urine tests have been cloudy, with 3+ leukocytes and hyaline casts. I have been treated for uti (I had no symptoms though) and my urine continues to show the same.

My current rheumatologist seems to look at my lab work and judge from what they say. She says that I just need to be "followed" and it is her opinion that I don't have a rheumatolgic disease right now. She says I might later on. My previous rheumatogist had dignosed me with MCTD, but he then retired.

I am extremely frustrated. The last five years have been hell on me. Constant medical testing, problems, and new medications. Something is wrong! I don't care what the labs say! I used to be extremely active. Now I have to rest constantly. I see a pain management doctor and get Exalgo, which has at least helped the pain a great deal. I suspect these problems might all be related.

Do you think that I should see another rheumatologist for another opinion? What do you think might be going on? Some kind of diagnosis would be a huge relief. I think it is more than fibromyalgia. I feel like a lot of my problems are being ignored. I see specialists, and they concentrate on their system. It feels like I am being compartmentalized and that no doctor looks at the big picture. Thanks for your opinion. If you have any follow-up questions, I would be happy to answer if I can.