I have been reading all these posts because I just like to see what others journies have been w/ this...and I am starting to get myself even more worried and upset.

If you haven't seen any of my answers to others questions etc, I have seen a total of 10 drs. thus far. I was supposed to see another Rheumatologist yesterday, but they canceled last minute and I will see him today.

But-I have seen 3 already, 2 where from teaching schools...one was from Mass General (Director of Rheumatology, FM, and Osteoporosis) who still teaches, studies the diseases and works w/ patients for over an hr 2 days a week. MA General is associated w/ Hardvard Medical School.

Before him I saw a Rheumy out of a local hospital...(I am 50 mins away from Boston) and that hospital isn't associated w/ any school.

On 5/24/10 I saw a Rheumy out of U-Mass Memorial Hospital associated w/ U-Mass Medical School. He is a Director...but at the school itself. He specializes in AS, and RA.

My pain started last June early July in the left knee. I run 5 miles a day, and was starting to increase hills and the depth of them (I run outside on the sidewalk and then when it ends the pavement and then back to the sidewalk) and after a month or so, the right started hurting, yet not as bad. I called to see my Primary dr. to make an appt to ck both knees. No swelling, no heat, not stiff. Just pain.

I googled because I had to wait 3 weeks to see him "what causes bi-lateral knee pain?" No sooner did I google...RA seemed to be the 1st thing that popped up because of the "bi-lateral part". I am a very anxious person by nature. I get panic attacks often, I have severe OCD which I am told is a manifestation of the severe anxiety. I have had IBS since I was 20. I am now 35. I've had severe Insomnia for 6 yrs. I have a history of uterine polyps, fibroids, and ovarian cysts. I have a kidney stone that has not passed in about 10-11 yrs they think. I have an eating disorder, and I have diverticulosis which they think is due to the IBS. They found that when they found the kidney stone.

So all that alone, makes me anxious along w/ my job as a CPA. As soon as I read the RA materials and how it could manifest in your knee...I swear w/in a few days my hands, wrists, & toes hurt.

When I did go to see my primary dr; he did weird things they would do to your knee to see if there is a problem. He made my leg go in all sorts of directions..asked if that hurt...I said no. He hit the top part...I said a little...he said it looks like it's "quadricep tendonitis" on both...but more-so on your left. STOP your running on sidewalks and just run on the street...because the uneveness of the sidewalk to the flat street will cause this. I said, yes but what about my toes and hands and wrists. He just took and arm made me lift it up, then checked fingers real fast said NO, you don't have RA. In my 20 yrs I have only saw 2 people w/it. Plus I treat both your parents, get that outta your head. But he said to "satisfy me" he'd do a RA titer and a Lyme. I knew the Lyme would come back negative because I don't play in the woods...lol, and there was no bite w/ a red circle around it. He said he would put $ on the fact both came back neg. They did. I said, well RA titers can change I've read...he told me to "stop over-reacting." I asked for a referral to a Rheumy-he said NO. I'll send you to an orthopedic surgeon 1st. This orthopedic checked the same thing as my primary did 5 views of x-rays though- and said they came back fine. No fluid. No narrowing, no degeneration that was not significant w/ my age of 34. He said he wished he had knees like mine. He did understand the concern about the hands and wrists...and at this pt, the pain was worse in my neck and upper back-- that he did x-rays on those too...saw no arthritis...but my neck and back had some curvature...and he knew my lower back had levo-sciliosis from the lower lumbar x-rays. He decided to do an MRI at Shields of the lower back to see if the pain I was getting was a disc issue causing referred pain to the lower extremeties or not. The MRI came out clean, did say at the pt where there was sciliosis I had some degeneration (mild) but the radiologist thought that would most definitely cause referred pain to the legs, the knees and the toes.

Still didn't explain the top half of me though.

So one night the pain got so bad all over, I went to an urgent care dr. It's not the ER, but it was a center associated w/ my primary. That dr. said he could tell by the fact that my blood pressure was so high 171/80 and that I was breaking out in hives, that I was anxious by nature. Did a very thorough exam, lymph nodes, looked in my mouth/nose for sores, checked heart, checked reflexes, checked the toes, the arms, the hands, fingers, wrists...etc. Sat me down & said I see no visible swelling redness or heat at the lvl 8 pain you have --it doesn't make sense it would be RA, but I think because you are anxious, that we will do an ANA, a Sed rate, a CRP, a Vitamin D, a parvo virus and a CBC. He said he didn't expect anything to come back pos.

Well, 2 days later, he calls me, says I have to by law call you, and I didn't want to because I knew you'd be flipping out, and he said honestly 4 other internists checked my diagnosis of you, your medical history and your blood...we just think that the ANA is a false pos? It was slightly elevated speckled pattern--which I hear is the most general. BUT: because it was pos...I had to now see a Rheumy which the Primary was so reluctant to send me to. I was scared...asked what ANA was...is it assoc. w/ RA, as I thought..he said I don't think so, it could be, but ANA is more associated w/ Lupus than anything else. But it is seen in any connective tissue disease...whether mixed or not..so your Rheumy would have to check you out via more blood and a physical exam. He thought if anything it was FM.

Saw the 1st Rheumy...he checked everything too...temp, etc etc. Like every other one does. He paid a lot of attention to my fingers and toes. Asked me after all that, "this might seem like a weird question to ask, but can you wrap your legs aroung your head etc w/ no problem?" I said YES, I use to do it all the time..and I still can. He said I think you have a lot laxed joints. Many are hypomobile. Your muscle strength is not that of a 16 y/o for sure, it's probably worse that your real age...but your joints are that of a 16 y/o. Told me it was fine, if I was still 16...but back then at 34...it wasn't. He said ANA is such a broad test...it means absolutely nothing to him. He says..what I have been hearing from any other dr, he goes by family history, my complaints, his exam, and utilizes blood and x-rays as just a confirmation of his diagnosis. He didn't think it was RA, he didn't think it was SLE, but he did do specific tests for Lupus more-so then RA. I think only because ANA is most often connected to Lupus. He said he assumed all tests would be neg. and even if the anti-dna came back pos...he said there were no signs even w/ the joint pain I had w/ muscle aches to tell him it was Lupus.

His diagnosis was hypomobile joints causing pain...use Voltaren Gel on the knees prior to and after a run. Go to a PT and strengthen your upper leg muscles more. Running is just cardio, not strength training he said.

That's all good...but PT didn't seem to help w/ the UPPER half of my body as they only concentrated on the 2 legs. I really thought PT was a waste of time and $.

This Rheumy said the pain would never go away...(my mother was w/ me..and said, could it get worse?, he said to her, "do I look like a fortune teller to you?")...Needless to say that was the last time we went to him.

I finally posted on another board last Aug. about what that past Rheumy said. A dr on there said no dr should ever tell you-you can't take away pain ever. And that maybe chiropractic and deep theraputic massages might work for both the muscles and joints if this diagnosis was correct.

I gave it a try, figuring this too would be a waste of my time and money like every other dr thus far, but she worked. Saw her 3 times a week...did theraputic every so often because massages are not covered by ins. and she got me pain free in 3 mos. She didn't think the 1st Rheumy I saw was right w/ his diagnosis...told me to seek another Rheumy's opinion.

That brought me to the Director at Mass General. He has 50 yrs experience like I said...I know he still teaches...he stated to me he goes to all the latest seminars on Rheumatic diseases, FM, and Osteoporosis as well. What I liked about him was that he wanted to know everything about me. NOT just what was bothering me that day pain wise...like most drs do, but he wanted to know how family life was, how was work...how was sleep, how was eating habits. How do you feel about yourself. Do you have low-self-esteem. He took over an hr w/ each visit. He ran every blood test you could think of. I would go into the lab for blood, and see 20 viles there..and the tech would always laugh and say he always likes to be safe than sorry I see.

IF I had a question, I wouldn't get him by phone, I would get a letter from his receptionist though- which I'm sure he dictated to her. He always signed it "I want to calm your anxieties w/ this letter" and then signed his name...or she did...lol.

He checked for RA, LUPUS a lot, Deep Vein Thrombosis, and AI diseases I haven't even heard of. Always checked Vitamin and minerals that would be depleted from certain diseases as well as always did a CBC, RBC, and WBC. Full platelet count was always run. D-dimer etc.

He didn't do x-rays...not sure if it's because via his physical exams either...that he didn't see anything that would warrant them...or because I really only had the pain in the inside of my knees now, and neck and upper back.

He diagnosed me w/ early, benign Fibromyalgia. He didn't think it would get worse...he said I met MOST criteria...I just didn't meet all by The American College of Rheumatology. But his impression was it was FM for sure. It would not get to the crippling stage IF I started to manage my stress eary on now.

I kept seeing him..had no pain most of the time..and was ON NO MEDS except Vitamins. He would still always keep me for an hr...do an exam...and always ck blood every 6 weeks for changes. This was good for almost a yr. UNTIL people told me that FM is an underlying condition of something that is auto-immune...and that he probably threw me in that category because he doesn't know what it is either.

My husband works for the local hospital around here- and a nurse that has FM said...you can't have good days w/ FM...she was misdiagnosed. With my next visit I asked him plain out, are you throwing me in this cause you don't know what it is...he said NO...I have 50 yrs experience...and I am doing a lot of work w/ FM right now. Just because some people are crippling FM doesn't mean your case is LIKE theirs.

He didn't seem to get offended...probably was though...lol, and so I decided to go to a 3rd Rheumy just to see if that dr would say it was Fibro too.

He asked what hospital I went to before him. I said-- MA General..."he said that was your 1st mistake", but then I see this dr from U-mass was working at MA general since 8/2009. Obviously quit or who knows what...and then asked what dr did you see? When I told him, he said "OMG, he is such a crazy loon..say no more, I don't want to hear what he has to say". I said well he said it fit FM because I have insomnia (sleeping disorder) and IBS. This dr yelled at me and said.."like I said, I know him and he's not only stupid but he's crazy...I bet he tried to drug you w/ narcotics, that's his MO" I said NO, he actually didn't.

Then this new Rheumy says and FYI Insmonia is NOT a sleeping disorder assoc. w/ FM. Restless leg syndrome is as well as sleep apnea. I said "listen why don't you tell my psychiatrist that because he also classifies 2 hrs a sleep each night as a "sleeping disorder". He said nothing. Just palpitated my fingers and toes. Wrists ankles etc. Said "You have Inflammatory Arthritis, Poly Arthritis, and RA". I said RA huh? Why is the anti-cpp, RA titer, sed rate, cbc, rbc, wbc, and crp normal after a yr still. He said as all the others have..."I go by physical exam and what a patient tells me they have as issues. I said my feet and ankles and hands and fingers have not hurt since last AUGUST. My neck and upper back still hurt.

He says have you lost 10 lbs...I said NO I gained 17 in 4 mos w/o being on meds. He said can you lift a 5 lb object over your head w/o pain ..yes I can..

Do your fingers turn blue in the cold? No...and then he said ok, good, it's IA/ RA/PA. Even did his dictation in front of me. Didn't care I was thrown this curveball...but did say...if you ever see your other Rheumy again, you should thank him for doing such a dis-service to you and not picking up on this. Picking up on it? NO ONE else did either and I saw a LOT?!

He did x-rays of the hands feet wrists ankles. 2 fingers show as the radiologist put it, "mild mild swelling". I guessed what toes have it BEFORE I was told...because I have OCD and I tend to balance on 2 toes more-so on my right side than anything else. The ankle they see some mild swelling in has had surgery for a tumor in 1999. It never looked the same again lol...it always looks swollen..and alas...they see it is.

Radiologist impression: Could be overusage of those joints. Can understand where some Rheumatologist said she was hypo(?) mobile in many joints. Has flat arches. If she is wearing heels and trying to fit into a smaller shoe (yes I do...lol) all the time could have caused some mild osteopenia. Not really sure what it is at this time.

But the Rheumy who ordered the xrays seems to think because mild mild inflammation is there...it's RA, or will be at some pt. And, I really think my anxiety gets the best of me...because as soon as he said it was IA/PA/RA, the next day -whole body hurt again.

His words to me via his receptionist when I called and asked to speak to him about his over-all bedside manner were "tell her she won't die from this, she doesn't need a DMARD because it's not serious, and she is lucky it's not OA, but do tell her stress won't help her w/ this and FM is a brain disorder and she doesn't have that".

IF it is IA/PA/RA why wouldn't a DMARD be insisted on? He said 1000 mgs of Naproxen will get the mild swelling to go. I still feel pain in my neck and back and arms..he has no explanation.

Which brings me to the 4th Rheumy today. He also specializes in Rheumatic diseases, and FM. The other Rheumy did not in FM. I'm hoping he can maybe confirm both...or is this extra pain that won't go away w/ the NSAID all in my head. Klonopin and heating pads work for that pain. Where they see the minor swelling in 2 toes, 2 fingers and an ankle doesn't hurt. My wrists hurt...but there is no evidence by x-ray that there is anything wrong w/ them.

I just don't want to end up crippled, yet I don't want to take meds when no one can really tell me what it is, or if inflammation was caused by overusage, bacteria, viral. I am very OCD. I use the 2 fingers they saw the inflammation on to scrub things most of the time, and I don't know why that is...it's always been those fingers taking the brunt.

I hear the horror stories of-- if you're not in pain, the meds they want you on will make you feel worse.

Naproxen is killing my stomach on food and giving me the chills. I look like I have went 3 rounds in a fight w/ the bruising...but I was told this stuff thins your blood.

Has anyone else gotten the same diagnosis...that it's mild FM and mild IA that "shouldn't progress".

And why should I trust them that it shouldn't progress? ;) If it's RA wouldn't it? They all seem to refute what the other one says.

What I will tell you, is I am starting to get even more anxious, and depressed over the not knowing, the drs fighting on what it is, and is Naproxen the only thing I should be on? With the IBS this drug is KILLING me...and it's not working on the pain that does hurt. It might be taking swelling down in places they can only see on x-ray but it's not helping anything else.

Hoping the new Rheumy today can make this all clearer...if he can...I'd really like to go back to the MA General dr. after even though he didn't take x-rays...as I feel like he was looking at knee ones at the time...and those were causing the most pain.

Plus he's not dismissing the neck and upper back and he out of every dr spends the MOST time, and is genuine in how he treats you. I have the x-rays of everything now on CD w/ a report..so he can go from there I guess.

Just wondering besides Jane...lol, who else is getting conflicting stories...and do you go by your gut or what?