I just told my history under the subject line How/when did it start...
My last thought was that I wish I'd been more assertive, because I spent many painful years before a diagnosis and appropriate treatment.

I should have returned to the doctor sooner, but I guess the everyday pain came on slowly, the Ibuprofen helped with the worst of it, but the flares became worse and more difficult to deal with. I didn't complain. I didn't think anyone believed me. I guess the old adage, the squeaky wheel gets the grease, is true. I wasn't squeaky enough.

Honestly, I think that I just accepted the gradual stiffness and general joint pain went along with getting older. I think I was probably in my late 40's when it all started, so not really all that old. I sure did feel old though. I feel younger now, so I've been lucky that I've responded so well to treatment. I hope that you find the right treatment for you. You have a lot of symptoms that seem to fit. If you need to see another doctor, do so. It sounds like you are already having some joint damage. Good luck and don't let them make you feel that it isn't real, that is exactly what I was feeling. Find a doctor doesn't brush you off.

Thank you so much for your feedback and encouragement. I've been reading some of the other topics here and feel really glad I found this group! Since my first visit with my doctor last year when she thought my symptoms were RA, I've done a lot of reading on it. I think I've had flares and remissions multiple times for several years before I finally had the ongoing pain I have now. I had several back to back pregnancies in 2008 and 2009 (we lost 3 boys) and then was on bed rest for 7 months with my now 5 year old and had progesterone shots every 4 days and a bunch of other meds to keep from premature labor.....so I thought my body was just recovering from all of that for the first two years I felt symptoms. But now the pain and twisting in my fingers toes is daily....much like an icepick prying my joints apart. Sometimes its in my neck, ankles, feet, wrists, elbows, shoulders. Flares are very recognizable...I feel like I got run over by a steamroller, it usually hits worse in the middle of the night, every joint in my body hurts as does my head (and my kidney for some reason) and sometimes I have a fever. I'm already anxious about my upcoming rheumatology visit....what if I'm one of those people whose blood work never show RA? My fingers and toes are so changed and twisted as it is! Everything I read says early treatment is vital to prevent bone damage.

Are the flares hot to the touch and red? I know with me, you can visibly see the redness, and feel the heat. My rheumatologist often uses that, along with swelling, of course, to see if I have improved on the new meds.

I was sero-negative, and I had the worst time getting a diagnosis. It took me 4 docs, before I finally found one who diagnosed me by symptoms. Looking back, I was not assertive enough with any of those docs, including the one who said, "It looks like RA, it feels like RA, and it is in so many joints. But your blood tests are all normal, so it is not. Do not come back ever again and bother me!" Well, a lot of tears shed that day! And I did finally send him an anonymous letter, documenting how bad my RA was, and how if he had treated me earlier on, I probably wouldn't be severe as I am.

Do not take "no" or "come back in 6 months" for an answer. Some rheumatologists were never taught about sero-negative, and if they were, it was just that it wasn't severe and never would be, so give them some anti-inflammatories and maybe a DMARD, and sent them on their way.

I wasn't assertive the first 5 years, after taking 2 years to get a diagnosis, and I got terrible deformities during that period, to say nothing of the pain and disability. I have to wear wrist guards and thumb caps, finger splints, etc, because I have so many joints that are either subluxed or otherwise damaged. I also had to have my right foot reconstructed, which was a total failure! The left foot is a total mess, but I am not going to go through surgery, because the reconstructed foot still hurts more than the deformed foot. Sigh!

So yes, be assertive, keep getting second, third and fourth opinions. I wish someone had told me that when I was in such pain in the early years. Do some googling, and feel free to use me as a reference! LOL

My new rheumatologist considers me to be the "worst" case of RA he has ever seen! He has told me that 3 times. I was bedridden last year for months, until I put myself on large doses of prednisone. I have been on so many biologics, but my antibodies just destroy the meds either immediately, too early, or not letting them work fully.

I again, urge you to not put up with this nonsense. And pregnancy, while it is better when you are actually pregnant - all the hormonal changes can trigger auto-immune diseases.

Praying you get a proper diagnosis, whatever is wrong with you, and the right treatment.

Thank you so much!

I don't remember--is there anyone here who DID get diagnosed right away?

I was looking at my records a couple of days ago, and there still isn't a diagnosis in my chart. I am, however, getting treatment, and that is what is important. If you have twisting in your digits and nodules showing up, don't take "no" for an answer. If this office blows you off again, ask around and find somewhere else to try. What you are describing is not normal, and is not something to just live with.

I feel lucky in that my current rheumatologist is everything one could ask for in a doc. My second one was awful, and I never went back after the second visit. I was saddled with him when the first one closed her practice. Keep trying until you find a good one. I don't know where some of these people come from.

I think almost most everyone struggled with getting a diagnosis right away. Even board certified rheumatologists may be reluctant to label it RA if you don't have obvious symptoms and diagnostic results that are on the criteria list.

How about a wait of 28 years? That's how long it took me to be Dx'd with Ra.

The Ra Dx is done by a list of criteria and you need to have 4 of the 7 criteria that are considered essential for an Ra diagnosis. For all you know, you might have 3 and you are waiting for 1 more. If you have it, you'll get there sooner or later.

Took me 28 years as I have an extremely rare presentation for Ra....it hit all my soft tissues before it ever hit a joint. My body was almost frozen from 28 years of tendinitis and bursitis. Fianlly hit my left wrist and an MRI showed it and I was off to the races..

My rheumy knew it would turn out to be Ra but rules are rules and when you have to meet criteria, you have to meet criteria. Just took me forever! We all know docs "can" break the rules but unfortunately, insurance companies don't.

gentle hugs.............Jen

I am very lucky to have lived in a very remote rural town for the last 23 years. We have a medical clinic an hour over the mountain where the docs have to see and treat anything that walks in the doors. My first flare was very intense but being a nurse I thought it was just an exacerbated case of my generalized arthritis and I'd just ride it out. That is until it lasted over 3 weeks with pain levels that were almost unbearable. When I finally went to the clinic I saw a provider whom I have known and who has known my medical history for the past 15 years. He listened as I explained how every joint and the tissue in between and around them hurt. He then gently felt my hands and feet. We talked awhile and then drew some labs. He called me within 3 days with a sero positive diagnosis of RA and prescribed mtx and folic acid. Over the past 6 months we've gradually increased the mtx until my inflammation and swelling are gone and my pain is at a tolerable level most of the time. The side effects are gone with the exception of the fatigue. My sed rate and crp are back to almost high normal ranges and my RA factor is down to half what is was. He would readily refer me to a rheumatologist but for now I have refused to do that because our nearest one is 10 hours of travel round trip. If and when the DMARDs don't work for me then I'll reluctantly go. So I guess what I want to say to you is that it is really important to have a provider who will actually listen to you, hear what you are saying and pay attention to the symptoms that only you can describe. And then discuss a plan of action and act on it. Don't let them put you off. That relationship may become one of the most important ones you'll ever have. Good luck to you.

I saw an Orthopedist for my feet. My hands were not good either, but I only told the Dr about my feet - didn't want to seem like a complainer. So, partially, it was my fault for not being completely truthful. Anyway, Orthopedist referred me to physical therapy. After several sessions, nothing the therapist was doing was helping at all. She discussed it with one of the other physical therapists, trying to figure out what to do next. As it happens, the other PT has RA, and suggested the Orthopedist refer me to a Rheumatologist. At the first visit with the Rheumatologist, I was diagnosed with seronegative RA, and started treatment.

grandmacm, you do have a long, long trip to the rheumatologist! Is it possible that the Rheumatologist would make monthly trips to a clinic/hospital closer to where you live? There are some specialists that will go to a clinic, once or twice a month, that is 'only' a 75 minute round trip.

2leftfeet, I hadn't thought of that and after checking it out I have found that the nearest facility that the rheumatologists travel to is still a 6 hour round trip. The rheumy there is rated 3/5. Not too encouraging. The county I live in and the surrounding counties are pretty sparsely populated so it is not financially beneficial for any of the specialists to travel here. In addition to that the rheumatologists in Utah are all so busy that I don't think they'd want to take the time away from their regular practice. I'm hopeful that my current provider will be able to manage my RA for the foreseeable future. I feel very blessed that he was right on top of this with my first flare. But I'm also realistic enough to know that may not be the case and at that point I'll simply have to travel.

Altoclef, I was actually diagnosed right away. So much so, that I was questioning the diagnosis. I was put on MTX right away & I think it really helped keep my joints form having alot of damage.

Thank you all for your feedback! I am so glad I found this board. It is like being in another country and speaking another language and finally finding a group of people who have been in your hometown and speak the same language as you! It is so amazing to me how different the onset experiences have been, as well as the progression for each member. I feel much more confident now in what I want to ask the rheumatologist when I go in June and what I want checked.