It's A Flare and I Am Not Nuts

By dollyb2911

1 min read

Hi, I am a 53-year-old who was diagnosed 25 years ago.

My RA symptoms are not believed

I am the person who is always "ok" when asked, "how are you?"

I don't complain about pain or swelling, because it is "normal" for me to have daily pain and swelling.

I am the person who knows in her head she is having a flare, yet waits days to call for steroids because it might just get better on its own.

When I had my first flare, my PCP sent me to see a neurologist. He told me I should get more sleep. That my pain was due to just having my 2nd child (3 months earlier) and I needed to go to bed when I was tired and wake up when I wasn't.

I am a single mom of 2 and work full time. He made me feel horrible. Like I was nuts.

Self-advocacy makes a difference

I took it upon myself to see a rheumatologist.

I have a family history of RA, so I thought it was a good place to start.

While I was in his office, he asked questions about me and my symptoms. He described to a T how I felt and never once made me feel "nuts."

He ordered my lab work that was seropositive for having RA. I started on my cocktail of medications and felt better within weeks.

If you get anything out of my story here is to please be your own advocate for healthcare.

Do your research and question even the doctors you see if they make uneasy about your medical care.

I had a flare ... I wasn't nuts!

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RHall Community Admin
<inline-mention username="dollyb2911" user-id="3159686"/> Thank you for sharing your story. We talk a lot here about the power (and necessity) of advocating for yourself. It's hard and scary sometimes. But it's also vital to ensure you receive the proper care. And your story encapsulates that mindset. I am so glad that you stood up for yourself and trusted yourself - and it seems like you found someone who believes in you and listens to you which makes such a big difference. Thanks! 💜 - Reggie (RheumatoidArthritis.net Team Member)
kelseyhaus Member
<inline-mention username="dollyb2911" user-id="3159686"/> I could not agree more with you on being your own advocate. It can be very challenging and intimidating but standing up for yourself is so important. Your symptoms and feelings are valid, no matter what any doctor says. Researching and coming prepared to appointments with questions, comments, and concerns, is one of the best things someone can do for themselves!
Richard Faust Community Admin
Hi <inline-mention username="dollyb2911" user-id="3159686"/>. Thank you for sharing your story of perseverance and self-advocacy. I couldn't help but think of a family story of the diagnosis of my wife, Kelly Mack (a contributor here). Kelly was diagnosed at two, over 40 years ago. When she first developed a trouble walking and a lot of swelling in her knee the first doctor said she was faking for attention, mimicking her grandmother who recently injured a leg (never mind the extreme swelling). Kelly's parents found a rheumatologist who took one look at her and knew immediately it was juvenile RA. Kelly's mom took the diagnosis paperwork back to the original doctor and informed him that he was not getting paid for his dismissive non-diagnosis. Sometimes one has to stand-up to being dismissed. Wishing you the best. Richard (RheumatoidArthritis.net Team)
jmack Member
dolly2119, Thanks for sharing your story. Be persistant with doctors. Be brave -- if you don't think a drug is working, say so repeatedly if necessary. Ask about the biologics and the other newer drugs. There are so many medication options on the market that do suppress the disease. The challenge is to find the drug that works for you without unbearable side effects. In 1981, I was diagnosed with RA (at age 26) when the top of the line treatment was gold injections and methotrexate -- both of which I tried and neither stopped the disease. Steroids helped some but it wasn't until 1999 when the biologics Remicade and Enbrel became commercially available. My rheumatologist asked me to try Remicade -- I know the list of potential side effects are scary -- but I agreed. I've been taking Remicade for more than 20 years and it has essentially stopped the disease. I have had no new joints affected. Inflammation is essentially gone and fatigue too. These drugs do not repair the damage (or pain of bone rubbing on bone) already done to joints. I have had 13 surgeries to repair the damage done before Remicade. I hope you are able to find the medication that stops disease progression too. Stay strong, Jane