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