Confused - ?RA with no signs of inflammation on hand sono

[NY65]

I have always had intermittent neck and lower back pain from mva in my 20's. Five years ago an mva left me with intermittent hip and shoulder pain and fatigue - all bloodwork negative. Last summer the wrist, hands, ankles, and feet started getting swollen, stiff, and tingling, hip pain with only walking a block, and fatigue even with just taking a shower. It was the brain fog that finally made me go to a doctor. Now ANA positive, RF positive, CRP 1.5 but all more specific testing negative. Slight swan neck deformities noticed on some fingers. Rheum believes I have RA(son seronegative RA) but questions if I have Lupus also (sister Lupus and I use to get circular red patches and mouth sores before starting plaquenil). Since the plaquenil started in December, I rarely notice swelling except mildly on hands and feet when I am too active (try to walk over one mile, or travel), usually just noticed in the morning. I can't walk a mile, ride the bike more than ten minutes, or sit in a car long without fatigue, stiffness and pain coming back. Six months on Imuran didn't help so will be trying methotrexate next. Rheum sent me for hand/wrist sono but radiologist said there is no sign of bone erosion or even inflammation....even with having pain as he pressed on my joints with the probe. Is this normal with early RA, is this something else, or is it 'just in my head'? I appreciate any input....for I am just confused and frustrated. Thank you

[helixhelix]

I don't know what a mva is?

Anyway it seems quite common to have a mix of these diseases, or something that bridges two of them. Some call it Rhupus. So that's entirely possible.

As is having no erosions - thankfully! There are again quite a few people who get swelling and inflammation without significant erosion. This disease comes in a number of different levels of aggression, but even if you don't have an aggressive form it can still cause complications, pain etc etc so not to be taken lightly. So all entirely possible that the hydroxychloroquine has calmed the inflammation down so little to be seen but the disease is still active causing pain and fatigue.

Talk to your doctor, and ask questions. You need to feel comfortable with the diagnosis and treatment. Just bear in mind that generally doctors don't just hand out methotrexate like sugar pills - they themselves will want to be sure it's necessary. So they should be able to explain their reasoning.

[NY65 in reply to helixhelix]

An mva is short for a motor vehicle accident. Yes I am grateful that the sono showed no erosions. You are astute in realizing that not seeing evidence of inflammation made me start to doubt taking these aggressive meds, even my diagnosis. Even when I tell people of my blood results, I get 'everyone has pains and memory issues after 50', or 'you look fine, maybe your too stressed'.......yes I am stressed but it's because the pain wakes me up at 3am just because I cleaned my house or went to physical therapy, I can't walk outside more than 20 minute or travel to help my son move into college without getting fatigued and pain....I am stressed that this isn't fine and I haven't been able to return to work going on nine months now. So thank you for your response.....I have so much to learn about this disease. Could you share with me how long it took for you to get your symptoms 'under control' and do you ever get to finally feel that you are 'back to normal'.

[helixhelix in reply to NY65]

One thing that's hard to get your head around is the whole concept of a long term disease. It's not just that it will most likely last for many years or your entire life, but also the length of time it takes for things to happen. And by that I mean the both positive things likes drugs taking effect as well as the symptoms sometimes developing very slowly. It's easy to think 'oh I feel better today it must be a mistake' and then find months down the line it was not a mistake and it's 10 times worse.

I was lucky in some respects as after years of little niggles (that I ignored) it then hit me like a train so there was no question about the diagnosis. And 6 years later I have a few lesions, but no major erosions which is due I think to treating it aggressively from then on.

I am now well controlled and 95% 'normal' as long as I take a bit of care. But it took over a year to get it controlled as I had to increase the meds time & time again. I now take Methotrexate, Hydroxychloroquine and Sulphasalazine.

Try as much as you can to ignore the "you don't look ill" people and listen to what your own body and your doctors are telling you.

[Damaged]

I could not agree more Helixhelix,

It drives me crazy. People are all experts and know someone just like you. Go vegan, drink this water , do not believe tests or doctors . My mother in law lives in my house. She is relentless, no matter the topic she not only shares her opinion but tries to ram it down your throat. The other issue is meds. They take all meds as recommended by doctor and stand there arguing I should do the opposite? So in their minds, they are ill, I am not. The last doc I shared was from Cancer Centre indicating non hodkin's lymphoma. They continue to Denise I am ill. Forget other people, you know your body, listen to what it is telling you. There is NO ONE, better qualified.