Just Need Some Reassurance/Support

By Wifeto1momto6

2 min read

I'm 48, female. I saw a rheumatologist for the first time today.

In brief, history of ulcerative proctitis for 15 yrs. Remission now.

Are these new symptoms a result of RA?

7 weeks ago, my left wrist began hurting when I had a sunburn on my left arm. The joint pain is sharp, burning, and moved quickly to my thumb joints in both hands, then pointer fingers, then pinky fingers within a few days.

My elbows, knees, and ankles and both big toes and the pads of my big toes hurt.

I'm a dental hygienist for 28 yrs and for years I've had a random sharp pain that would show up in a hand joint.

Severe pain but would disappear within 24 hours. No sign of it again.

8 weeks ago I had no problems and could do anything and for 7 weeks now it hurts to hold and manipulate my instruments at work and doing things like scrubbing dishes or cleaning a bathroom makes me cringe.

2020 I had right shoulder pain that also was sharp and painful but MRI and orthopaedist couldn't find anything wrong. I don't sleep well.

Blood work & RA

My RH factor was 21, I was Ana negative and the CCP was <8.0U/ml = normal. The only thing elevated in my extensive blood work up to today was my eosinophil, which is new but can be because of autoimmune diseases like my Ulcerative proctitis may be or seasonal allergies.

Conflicting information from doctor

I don't have visible swelling or redness, but the pain that fires off in multiple joints is frustrating and depressing to a level I have not known. The doctor is leaning away from RA but everything else he says doesn't seem to fit either.

He prescribed prednisone today and I've only taken the first dose. Within an hour everything felt better but 10 hrs later all the pain in my hand joints returned and a little in my other joints. Maybe I'm just nuts. Maybe it is all in my head. Is that even possible?

I don't want this long road of talking to multiple doctors and trying to convince them the pain is real. I'm already exhausted and some of you have dealt with all of this and much worse for years.

I don't know how I can keep doing my job when I'm almost in tears most days. Oh and the other thing leading away from RA is that the DIP joints hurt also. These symptoms don't fit anything I've read about or the Dr talked about today.

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Jo Johnson Moderator & Contributor
<inline-mention username="Wifeto1momto6" user-id="4610793"/> So sorry you are struggling with pain and getting a diagnosis. Of course, we can’t help a lot with the diagnosis, but a couple things came to mind as I read your post. One of the hallmarks of RA/RD is bilateral joint pain. I too have DIP pain, but only during flares. My MIPs and PIPs are almost always sore snd swollen. Knowing other hygienists, I wonder if one sided osteoarthritis is more common in your profession? The fact you responded well to prednisone may indicate an inflammatory process. It can also give a short term burst of energy and feeling of well-being. (Or hunger and agitation 😉 I had a difficult time getting diagnosed until I finally had a hand ultrasound. The synovial findings were diagnostic to the point of convincing the doctor,who didn’t believe in my symptoms, that I did indeed have RA. So, I would consider requesting a hand ultrasound. It can also help stage the disease. My doctor wanted mine done off of steroids though. I recommend you continue to cruise through our site. The community here is amazing. Feel free to ask more questions, and please post updates. With Hope and Best Wishes, Jo
Wifeto1momto6 Member
Thanks <inline-mention username="Jo Johnson" user-id="3158858"/>, I appreciate the input. I think part of the frustration is that it hurts and Im already frustrated with the pain and it seems like, while the rheumatologist seems very smart and has listened for a long time, he doesn't seem to actually hear me. I do have a follow up question though to what you said about prednisone. Have you or anyone youve known, ever experienced prednisone working for a short couple of days almost like magic and then day 3 the symptoms all came back? Im on a 9 day taper starting with 15 mg. It sounded almost like that is what you said above... I agree what you said about the dip joints and osteoarthritis being more of a common thing with hygienists. My xray showed almost nothing according to the report. It could be osteo in the dip joints and inflammatory in the other joints maybe, but it all feels like the same type of pain, like the joint is a capsule made of glass and its broken and cutting into the rest of the tissues around it. At this point, I don't care what it is, I just want it fixed. Thanks for listening.
Jo Johnson Moderator & Contributor
<inline-mention username="Wifeto1momto6" user-id="4610793"/> As I understand it, xrays are more accurate for later in the disease, once permanent damage has occurred. Ultrasounds are more accurate and diagnostic earlier as they show synovial changes before bony changes have occurred. The goal of RA treatment is to prevent the permanent damage an xray shows. Regarding prednisone, personally my symptoms vary a great deal with my prednisone dose. We have not been able to find the right biologic med for me, so I’ve had to rely on steroids too much. Jo
Wifeto1momto6 Member
@rbhx thank you....today I needed the words "Hang in there. Do not give up, it will get better." In the middle of my work day. ❤
Daniel Malito Moderator & Contributor
<inline-mention username="Wifeto1momto6" user-id="4610793"/> Although I don't want to bring you down, I also want to be honest and say that what you are going through with having to visit multiple doctors and finding it a chore to get them to listen is not uncommon for those of us who are sero-negative. When our bloodwork doesn't show the common markers for RA and ra-related chronic illnesses, it makes many doctors question if what we are feeling is "real" and "serious." If they felt it for one day they'd know, it's real and it stinks. If you keep it up though, you will eventually find a doc that you can talk to and hopefully find a routine that works for you, as many of us do. In the meantime, though, know that we are here for you and you don't have to go through it alone. Let us know if we can do anything from here! Keep on keepin' on, DPM
1. Wifeto1momto6 Member
 <inline-mention username="Daniel Malito" user-id="3160778"/> thank you for being real about it. I've read so many posts about frustrations with Dr's. I don't expect them to be perfect and know everything and I certainly wouldn't really want to be a Dr competing with Google but seriously, at what point did we start having to convince Dr's that something is wrong and it hurts? And when we say 'it hurts' e don't mean like we skinned our knee or banged an elbow on a table but that it actually feels like someone is cutting into the tissue around our joints. It seems like there is a huge gap in health care where people who don't fall into a pre existing category of lab result positive people, just have to sit out and what for there to be some testable damage to our bodies. I know I'm speaking to a whole group that has experienced the same or worse for much longer than I have, but it still just amazes me and depresses me. But I'll keep on pushing, because I have no choice. Thanks again.

Just Need Some Reassurance/Support

Are these new symptoms a result of RA?

Blood work & RA

Conflicting information from doctor

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