RA is Truly Different for Everyone - My Onset Story

My disease onset starts differently than anything I have heard before. I was 19 years old, home from college, and visiting my parents.

Swollen hands marks RA onset

I woke up in the middle of the night in a panic. My hands were swollen. Swollen BAD. They looked like balloons. I could barely close them.

Due to the swelling, they were also red and hot. I went to take some allergy medicine, thinking that an allergic reaction was the only possible explanation. That's when I saw my lips were also swollen.

They were huge and they kept swelling. No amount of ibuprofen or allergy medicine was going to bring this down.

I waited a grueling 5 hours until the doctor's office was open. The PCP promptly referred me to a rheumatologist. This does not happen often for people.

Dismissed by rheumatologist

I am only lucky for this quick transition to a specialist because my mother also has seronegative RA and she said that she knew right away what my problem was.

Upon waiting to see the rheumatologist I experienced pain I had never felt before.

All of a sudden the trays at work were causing me pain and stiffness in my wrist and hands. All of the sudden my knees were bothering me - everything seemed to be bothering me.

But when I got to the rheumatologist she said she felt no swelling.

She said if there is no swelling how can there possibly be pain?

Well if you have RA (or any other autoimmune disease) and are reading this then you know that pain CAN and DOES exist without swelling.

RA is a systemic disease that affects every single part of your body and it impacts every single person differently. She dismissed my symptoms making comments that I was making it up or looking for attention.

Seronegative RA

It didn't help that my blood work came back to say that I have no Rheumatoid Factor- i.e. I am seronegative.

Being seronegative does not negate pain it does not negate disease.

In fact, most people who are diagnosed as seronegative BECOME seropositive over time (not always - like I always say, everyone is different).

Exploring different medications

Fast forward a few visits with that awful doctor, I ended up finding a wondering rheumy who treated me with nothing but kindness.

She reassured me that there can be pain without swelling but she also let me know that she could tell I DID have apparent swelling in both elbows, both wrists, all my fingers, both knees, both ankles, and all my toes.

Remicade

We started a medication journey to remedy this. After some trial and error, I found Remicade. A medication that essentially put me in a drug-induced remission.

I took Remicade for a little over a year (maybe two years?) until my insurance changed and I could no longer afford it.

Orencia

We made the switch to Orencia. My body handled the change extremely well and my symptoms were still almost completely gone until my second year on it, it suddenly stopped working. This was last year.

It was the worst year for pain I have ever had. Every morning it felt like I was walking on rocks. My collar bones and my sternum get so stiff in the morning or from just leaning on the couch. I experienced chest pain so bad I couldn't get out of bed and by the time the pain subsided enough for me to move, I stood up and realized not only did my chest hurt, so did my foot.

This was the start of ongoing madness. I got a bad flare in my jaw that lasted 2 months. Eating was painful. I remember trying so hard to eat a sandwich and just crying because it hurt too bad. I remember not being able to lift up my arms, my husband had to brush my hair for me.

Xeljanz

I tried Xeljanz next which did nothing.

Rinvoq

Then we moved to Rinvoq which I am happy to say has taken a lot of my problems away but it certainly has not put me into remission like Orencia or Remicade did.

But I am perfectly fine with that and am happy to report that my last joint exam went great (despite having had an ongoing flare in my wrist for about 9 months. But I have accepted that it could potentially hurt forever. As long as its not my whole body, I'm good!).

Managing symptoms daily

In regards to impacting me day to day - putting flare-ups and fatigue aside, I struggled a lot when everything seemed to be spiraling out of control.

I felt an overwhelming sadness for myself and if I thought about that too much I started to feel sadness for others who this disease impacts far greater than me.

I am very lucky to say I am definitely in the "moderate" range as opposed to "severe". My heart aches for those who have to experience this type of disease.

Moving away from the sadness - RA has taught me a lot of things the most important one being that anyone can have an invisible illness and just because someone looks fine on the outside does not mean they are fine or healthy on the inside. Never judge a book by its cover, you never know what will be inside.