Fibromyalgia Community

I am really confused! I was diagnosed with fibromyalgia many years ago by a rheumatologist who then argued with me about how I had the pain points (when I didn't). He then decided my primary care doctor could handle whatever I might need.

Later my primary care doctor found that two of my labs were always high. Sed rate and C-reactive protein. He said they were not SUPER high, but much higher than normal. I also had a lot of joint pain....everywhere. The blood test for RA was negative. He sent me to a different rheumatologist.

That rheumatologist was a bit "odd," but I just hoped he might be able to come up with something that could help. At first he diagnosed me with beginning rheumatoid arthritis because of my symptoms and one MRI of my hands (only one joint looked like a problem). He had me on various medications for RA, nothing really helped too much. Later he decided I actually had fibromyalgia and was surprised to find I was taking Plaquanil (that HE had prescribed). He pretty much couldn't make up his mind on what was going on.

Thankfully we finally got a local rheumatologist. I've only seen her twice so far, but she's done xrays of my hands and feet and ultrasound of my hands and one elbow. She ordered lab work as well. The test for RA was again negative and she also ordered some genetic test (can't think of the name of it), but it was negative too. She thought maybe ankylosing spondylitis, but some other test she did was negative. She feels it COULD be sero-negative RA and/or fibro and/or osteoarthritis. I did have fluid and what looked like some thinning of the bone in my finger joints. Pretty much all my joints look bad - knees, elbows, wrists, neck, SI joints. She started me on a very low dose of methyltrexate (injection 10mg once a week). She drew labs before starting because I have donated a kidney in 1997 and also had gastric bypass surgery last Oct. The nurse called and said things were ok, but that my inflammation factors were very high (higher than my "normal" high) and that meant my arthritis was active. I was having car issues and trying to get my youngest to an occupational therapy appointment, so I didn't ask questions or anything, so I don't know what levels or how high they were. I know at one point my sed rate has been 100, but that was when I was having an extremely bad low back pain "attack."

I can no longer take oral NSAIDs due to my gastric bypass surgery and even though I have lost over 90 pounds since last August, I am in A LOT more pain then I was before. Everything hurts..... Can you have both fibro and RA? What else should I be asking her about? I cannot even sleep at night because the pain wakes me up. During the day I'm in constant pain. I just try to ignore it. Tylenol doesn't help at all. I don't know what to do or ask.

My oldest was born with kidney failure due to a urologic birth defect, so I know A LOT about kidneys and the urinary tract, but I don't really know anything about arthritis.

Help? And websites or suggestions of questions to ask my doctor?