Renne,
I was stunned to see your posting.

I posted several months back with the same title! The answer is YES!!! I have done a lot of research and there are lots of people like this. Do you have a diagnosis? Can you tell more about it?
Kelly
http://rawarrior.com

I just want to say to that doctor - "DUHHHHHHH!!!!!!" Oh, this just enrages me! I didn't have swelling till it got so bad almost every joint in my body was affected, then only a few finger joints turned red and swelled up.

Good answer, Kelly.

Your post sounds familiar! The best thing I did was to find another Dr. My old Doc told me that a flare was only if a joint swelled and got red. So NOT TRUE! I found a new Dr. and it's amazing the difference! It's so frustrating to hear other people going through the same thing! Good luck and consider looking for a new Dr. it may help you! Tif

This is a very big problem in the rheumatology industry. I am hoping we can make inroads at this one. I've talked to a researcher who knows that the sed rates and swelling are sometimes down with disease activity and damage still going on.

However, I've met some docs who are clueless on this. They just shrug & say: maybe fibro...

Kelly
http://rawarrior.com

Renne, I have had RA for over twenty years. I have been on so many treatments its hard to remember all of them. I frequently have severe pain (8-9/10) and stiffnes with minimal swelling. It can be very difficult because people think I look so good and have been told I have a "low Pain tolerance" by some Drs.However, my Rheumy that I have been seeing for 20 years says that frequently there is no swelling. It is not necessarily related to Pain. GOOD LUCK I know how hard it can be. DEB

I saw my rheumy recently and told him I have been in a lot of pain but seem to have little inflammation. He said it could be due to RA damage and ordered knee and feet xrays so we can see if there are any changes - I hope not but it is what it is...

hugs jilly

Even though I had no swelling originally, my doctor felt I had RA. For at least a year and a half after I first started having symptoms I had no swelling. Once I started having swelling, and warmth on the joints, she said time to start the meds! I did have pain and stiffness prior to swelling.

Renne,

I'm going to go along with just about everybody who replied and say "yes" in big letters. I've seen several doctors over the last few years who all said I didn't have it because I didn't have the marker and didn't show any swelling when I would go in. A couple of weeks ago my current doctor finally said I had it but it presented atypically. I'm just now starting on a treatment protocol and am relieved, but a little disappointed that they didn't find it sooner. Hopefully they will come up with an improved criteria for diagnosing this disease so people can get the treatment they need before the damage is done.

Thank you all so much for your replies and encouragement. Kelly, in response to you for more info... my sister was diagnosed 2 years ago with Lupus. I have been dealing with a 5 centimeter cyst on my right ovary. Since it was not cancerous and fluid filled the Dr. wanted to wait and see what happened over a month or two. That was back in May. I decided to wait 4 months. During the ensuing months I started waking up every morning with stiff, sore hands. My back has bothered me even longer but didn't related it to RA at first... anyway, then my feet started aching... my elbow hurts all the time.. wrists got involved. When I followed up on the cyst I asked the General Doc to do a screening for RA. Well, my rheumatoid factor was 72 my ANA was positive and my Sjogrens Syndrome was positive (my sister has sjogrens too). I got a referral to a Rheumatologist and my first appointment didn't inspire a lot of confidence in her. She did most of the talking and very little listening... and she kept coming back to the no swelling thing. At this point she took more blood and is checking sed rate.. ccp etc... urinalysis.. checking thryoid, my anemia.. I am chronically anemic both iron and B12... so I won't find out anything until Jan 7 on my next visit. .The bummer is that I don't have insurance but I am Native American so I can go to the Indian Clinic here for free so far.. I do have to pay for things like sonograms... so what do you think?

Renne, I am no doc, of course. But it sure sounds like RA!

By the way, as a Native American, you'd be 5 times more likely to get RA. Renee! Beginning treatment asap is very important to help with your future health and possible prevent worse damage of RA. Is there any way you can see a different doc? OR can we get some info together to show this doc if you have to stay w/him? I am sure I'm right about the swelling thing.Again, this is too common and so wrong.

Okay, start reading here and read part 2. Click on the links to look at the references also. This is a basic article on RA tests.

Also, don't be worrying about the ultrasounds. This doc would not be able to use them to help you anyway probably. Read this:
http://rawarrior.com/2009/11/ultrasound-for-rheumatoid-arthritis-part-1/
It has 3 parts. Also, again, the references are links. Those will show that what we have told you is correct. Try to get an anti-CCP blood test if you haven't already.

Renne, good luck to you! I am sorry you seem to have RA. For some people, there is remission. Let's hope for that. Also, it is not as bad for everyone as it is for some. So, lets hope. But you do need treatement.

Kelly
http://rawarrior.com

http://rawarrior.com/2009/08/is-there-blood-test-for-rheumatoid/
Renne, sorry, that's the blood tests article. Not sure what happened to it in my last post.
Good luck!
Kelly
http://rawarrior

Kelly, I read your blog on the blood tests. I too have been researching RA. I know quite a bit but was unaware that the tests could be normal with significant disease activity. I started wondering now many RA patients have significant anemia and wondered if the anemia might cause false blood tests? Just a thought. I am going to school and trying to get into the Registered Nursing program here so I sitting on pins and needles to get this thing in check!

Well, everyone seems to have answered your question, but just to let you know that I am another who was told I might have fibro, while my joints ached, and I continued to work out on an elleptical cross trainer and destroyed my feet. It took almost a year before I actually had red swollen flairs, and the damage continued in my fingers and feet. When I finally saw a rheumatologist, he told me that my sed rate was zero, so although it looked like RA, and felt like RA (the swelling was hot), it wasn't, so don't come back. I could barely walk at that point. I finally found an old rheumatologist through a friend that had psoratic arthritis which he diagnosed, and he diagnosed me just by looking at me. Eventually my sed rate went up, but by then it was too late, the damage was done. I just had surgery in April to correct the mess of my twisted, deformed right foot and I am still in pain. When I got assessed by the provincial health care plan for a subsidy for my biologic, I was told I had RA in 75 joints. Now I am almost normal, with the right medication, except for the damage that was done in the first year, and a very slow progression of the disease.

Everything I read says the best way to treat RA is to get it in the first year, and be aggressive. The old ways don't work. So find another rheumie, and be aggressive yourself. Esp. when your sed rate is already up. Good luck.

I was diagnosed in 2001 with sero-negative RA. I did have swelling and redness, but only a slightly elevated sed rate. At that time, since I had previously gone through years of troubles with fibromyalgia and, more recently, ulcerative colitis, my rheumatologist went with the RA diagnosis, treated me with sulfasalazine, and 3 months later, I went into remission for 4 1/2 years.

When RA hit me again, in 2005, it began in my shoulders. There was never any detectable inflammation or swelling in shoulders or anywhere else, but my blood tests indicated strong RA activity. About a month later, the RA moved rapidly to other joints, and when swelling and redness also appeared, I had a full set of symptoms which made diagnosis a lot more straight-forward.

I've red numerous accounts on this board, where people have suspected that they had RA long before their formal diagnosis. As somebody previously stated, early treatment with DMARDs is critical to arrest deformities.

RA presents itself in many ways, and the effectiveness and time it takes for efficacy varies widely between individuals. If your blood work supports a diagnosis of RA, then it should be a very clear indication.

doug

Hi Renne. Wow, me, too! My Rheumy doesn't like the RA diagnosis as she does not see damaged joints yet. However I read an interesting study in the Rheumy journal done by the Mayo clinic. They feel believe that those of us with a negative RA factor, but positive Anti CCCP, C-Reactive Protein and a high sed rate are more likely to have a non-erosive form of RA. That could be real good news if they are correct. My doctor's reluctance to say I have more than inflammatory arthritis does not explain the swelling, redness of my hands, the unilateral pain in my elbows, all finger joints, knees, and wrists with horrible fatigue. It knocks me out of my life when I am in an episode. I will try to find the article I read and send you the link. It explains a lot of what I am going through. Hope this helps.