Lurker Would Like Opinions (long /cross-post)

[Guest guest]

First of all, sorry for the cross-posting, but I would like as much input as possible.

Second, I'll introduce myself, and give some background since I am an active lurker, lol. I am Diane, 38 yr old SAHM to 3 girls, in Bellmawr New Jersey. I have had intermittent pain in various joints for as long as I can remember - as a child, my mother was always told it was "growing pains" Around the end of 2002, the pain in my shoulders and upper back became much worse, so I mentioned it to my then PCP. He wrote it off as stress, and did nothing. I changed PCP's in June of 2003 - mentioned the pain to the new doc - she sent me for lab work - CBC, Sed rate, RF, ANA, C-Reactive Protein, etc. Sed and C-Reactive Protein were elevated, but not outrageous. Dr started me on ibuprofen and prednisone. Both gave some relief. Two months later, pain was all over, and bad enough to send me to the ER, where they gave me a shot of Demerol. PCP repeated all labs, and based on increased levels and increasing pain in my shoulders, neck, upper back, and feet, she diagnosed rheumatoid arthritis. I also saw a podiatrist around that time that confirmed arthritis in my feet along with bone spurs and plantar fasciitis in both feet. Over the past 2 yrs, my pain and fatigue have continued to increase, and meds have been changed at times hoping to find something that works. I finally asked my PCP to send me to a rheumatologist.

Now here's where I'd like some opinions. - I saw the rheumy this past month - 2 visits 3 weeks apart. During the first visit, he reviewed recent lab work, asked about my pain, and examined me. Based on the exam and lab work (which was done while on prednisone), he said he was not sure that RA was a correct diagnosis, nor did he feel that I had fibromyalgia. He sent me for a nuclear bone scan and more blood tests. At my second visit, he told me that the bone scan only showed some degeneration of the elbows, and changes in the lower jaw. The blood work ruled out Lyme disease, Lupus, and any type of muscle wasting disease process. Basically, he said he did not know what was wrong, but did not want to diagnose RA because according to him I don't meet the criteria, and some of my pain is intermittent. My RF is negative, but my sed rate and C-reactive protein continue to be elevated, but not enough. He simply diagnosed polyarthralgia (pain in more than one joint), did not change or add any meds, and told me to have my PCP monitor blood tests periodically. He would see me again if needed. I received a copy of the rheumy's report, and in it he states - shoulder crepitus and soreness, tennis elbow, early osteoarthritic changes in the finger joints, bursitis in the hips - especially the right, and an uncomfortable feeling with palpation in the occipital area and both second ribs, but not true fibromyalgia tender points.

I am stiff for at least 2 hours when I first wake up in the morning, I have constant pain in my back and shoulders which is worse after activity, pain in both feet daily, and pain in my knees and hands that comes and goes depending on my activity level. I can't sit for more than 20 minutes or so without pain and stiffness, but I can't stand for too long either due to the pain in my feet. My PCP is great, and is really trying to help my pain. Should I ask her to send me to a different rheumy, or to someone else - maybe an orthopedist? I feel like I'm at the end of my rope, and my body is falling apart on me. What should I do?

Thanks in advance for any input, and thanks for reading,

Diane - in NJ