About

When it comes to rheumatoid arthritis, we all have our own story–when we found out, where we hurt, how bad the pain was, how long it took to find out “What’s wrong with me?”

I started LearningFromRa.com as a place to share my story and encourage you to share yours.  I’ve learned many lessons along the way, and I know you have, too. When we all share what we’ve discovered, we will not only find answers, but also find support from someone who knows what we’re going through.   Please feel free to leave comments and share your story.  Because yours is a story worth telling.

Where It All Began

My story began in December 2007 with the worst flu I’ve ever had.  It was so bad I even went to the doctor (which I didn’t do very often back then).

About a week later, my left shoulder suddenly went out to the point that I could hardly move it.  I wondered if the infection from my flu moved to my shoulder.  I’d never experienced anything like that before.  I went to my doctor who assured me that doesn’t happen and told me it was bursitis.  He injected it, and I went home feeling better, ready to finish my Christmas preparations.

Then, a week later, the same thing happened to my right shoulder.  This was so strange to me, but I didn’t know what to think of it.

What do Doctors Know, Anyway?

As 2008 began, I started having problems in my hands and feet.  I went to family practice doctors, hand specialists, orthopedic specialists.  I knew my problems must be related, but they all told me they weren’t.

Here’s what I heard from the doctors:

“Sometimes these things just happen, and it so happens that you have a lot of things occurring at the same time.  But they’re not related.”

and

“You may have rheumatoid arthritis, but I really don’t think you do.”

and

“Your blood test for RA was negative.  You can still see a rheumatologist if you want to, but there’s no way you’ll get in to see one for several months.”

even better

“You have trigger finger–in 8 fingers.  Let’s operate!”

and

“You have plantar fasciitis.  Keep stretching.  It takes time to go away.”

Finally…Answers!

Finally, in August 2008, I found out a friend in my neighborhood recently finished his schooling and was now a Rheumatologist!  I met with him.  He recognized rheumatoid arthritis right away, told me that the blood test often has false negatives, and arranged for me to come back.

At the moment, I felt relief to finally know what was wrong with me.  It was only later that I fully understood what I was in for.

I started on prednisone.  I was 27 at the time, and my husband and I wanted to have another baby before I started the heavy medications.  Plus, pregnancy is supposed to put RA into remission, right?  It sounded like the perfect plan:  get pregnant, RA goes away and never comes back.  But things rarely go as planned in life.

The Pain was Unbearable

Soon it was November.  My RA progressed so quickly and ferociously that I really couldn’t do much.  I hurt so badly I could hardly walk.  I didn’t feel like a good mom.  I could hardly wait for nap time when I could shoo my two children into their rooms because I needed a nap so badly. Everything was a burden.

Finally, my husband convinced me to go back to the doctor who was shocked at how many inflammed joints I had.  We decided I better start treatment.  He put me on methotrexate and Enbrel, and I gradually started to feel better.

My RA was Stubborn

Summer came, and I felt a lot better.  Winter came again, and I suffered.  My rheumatoid arthritis was stubborn.  Where others flare up, and then calm back down, I flared up and inflammation stayed and stayed until my joints were injected with cortisone.  It was frustrating.

I had a new rheumatologist by now, and in March 2010, we decided to stop methotrexate, because it obviously wasn’t helping much.  I replaced it with hydroxychloroquine.

Again, I improved as summer came around.  “I cannot believe these are your joints!”  My rheumatologist exclaimed at my summer appointment.

Hope is in Sight

Then I heard about friends of friends having success with the Elimination Diet.  I researched it and decided to give it a try.  After all, wouldn’t it be great if I found something that helped or discovered a culprit food that triggers my inflammation?

I read book after book, blogs and websites, devouring information, longing to find a way to overcome my arthritis.

I’ve made many dietary changes, aiming to be more healthy and discover any food allergies or sensitivities

Meanwhile, I stopped the hydroxychloroquine. A couple of months later, I found out I was pregnant and immediately stopped the Enbrel.

Medication Free!

It feels so amazing to be completely medication free! I’m managing my RA with diet and really trying to listen to my body and understand the way it works.  I feel much improved.

After the baby is born, I plan to have food allergy tests done and also try to figure out if I have any food sensitivities.  I have high hopes sending this rheumatoid arthritis into remission.

So, that’s my story.  Please feel free to leave comments and tell us about yours.