Sero-negative RA + Fibromyalgia

I am currently 56. I was diagnosed with fibromyalgia in 2005. Trazadone was the drug of choice then, and was miraculous for me. I slept better and had less pain and fatigue. There were many severe stressors in my life during that time: mental illness in the family, job stressors, celiac disease in the family, sole provider for family of four, knee pain and injury, etc. After my husband’s death, I realized my symptoms were much worse. My finger and toe joints were very swollen and painful. The trazadone was not working as well.

I insisted on a referral to a rheumatologist of my choosing, and went to the appointment. I realize that I am truly blessed to have found “the right” rheumatologist on my first try. He is caring, kind and keeps me in line! All the tests were negative, CRP, ANA, RF, ESR. He added Savella to my meds and said he wanted to watch me closely. In August 2011, I went to his office in almost complete shut down. I had severe pain everywhere and could no longer cope. As I sobbed in the patient room, he held my hand and promised he would get me through this. After 4 months, we found I had a severe vitamin D deficiency, and I had to change to a part-time job.

A year later, my rheumatologist decided I had enough symptoms to warrant treating me for RA, even though my tests were negative. We tried sulfasalazine, and added methotrexate. No real improvement. Started Embrel, which I had a bad reaction to after 3 months. Then I had my first knee replacement in 2014. And we had confirmation of my RA-the lateral side of my joint had been eaten away by RA! Soon after, the Vectra DA test became available and showed I had moderate RA.

I failed a trial of Humira due to side effects and lack of response. We then tried Xeljanz. What a difference! I now work full-time and only have flares once a year.

Fatigue is still a battle, and I have to pace myself more than I would like. Understanding my limitations is an ongoing learning experience. I bike ride and swim for exercise. When possible, I get massages. I really don’t have much choice in jobs because of my limitations, but I am grateful for what I do. RA has caused me to learn more about myself, my body, and my limitations. RA has also caused me to develop patience! I use humor when it’s really bad, as well as my faith. I look at RA as my excuse to read books (one of my passions) and not go bungee-jumping!

I realize that RA shapes my life, but only to the extent that I let it. I struggle, but constantly remind myself that I am a person who lives with RA, NOT an RA patient.

MS Hawks

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (10)
  • Monica Y. Sengupta moderator
    6 months ago

    Thank you so much for sharing, MS Hawks…Your positivity and resilience put a smile on my face this morning. I especially appreciate your determination and advocacy on your behalf. After all, we know ourselves best, right?

    I am glad Xeljanz worked for you and I hope it continues to provide relief. Thank you again for sharing and being part of this community!! ~Monica (RheumatoidArthritis.net Team)

  • Mary Sophia Hawks moderator author
    6 months ago

    Thank you Monica! I enjoy your articles and comments!
    MS

  • CarolQ
    6 months ago

    It’s nice to hear from someone that’s taken Xeljanz and had a positive result. I’ve tried just about everything under the sun with no real results. I’m definitely bringing it up at my next RA appointment.

  • Mary Sophia Hawks moderator author
    6 months ago

    CarolQ,
    Xeljanz is a JAK inhibitor, not a TNF inhibitor like Enbrel and Humira. If you tend to have stomach/heartburn issues, also ask for something to help with that. Xeljanz can affect the stomach. I hope it helps you. We are all unique, and it’s kind of like roulette until you find the one that works. Keep trying!
    MS

  • Richard Faust moderator
    6 months ago

    Thank you for sharing your story and your optimism MS Hawks. You are not alone in realizing that RA does shape who you are, while not letting it rule you. In this article one of our contributors acknowledges it sounds weird, but that she is thankful for RA: https://rheumatoidarthritis.net/living/being-thankful-for-ra/. She notes the ways in which she would not be who she is today without RA and states “And I’m grateful for this crazy, strange, beautiful journey I’m on and all the places I have left to go and things I have left to do.” Wishing you the best. Richard (RheumatoidArthritis.net Team)

  • Mary Sophia Hawks moderator author
    6 months ago

    Thanks Richard. I did read the article and agree with it. I walk with God daily and that makes the difference.
    MS

  • Erin Rush moderator
    6 months ago

    Hi c7mv96! I love how you haven’t let RA keep you from doing things that you enjoy! And I am glad you have never given up; you’ve kept pushing for answers and the right treatments for you. That’s such an important part of any journey with a chronic condition. You have to be an advocate for yourself and you truly exemplify that! I hope Xeljanz continues to work well for you for many years to come. Thanks for sharing! Best, Erin, RheumatoidArthritis.net Team Member.

  • Mary Sophia Hawks moderator author
    6 months ago

    Thank you Erin!

  • Donaldjbryan
    6 months ago

    Thank you for sharing this story with us.

  • Mary Sophia Hawks moderator author
    6 months ago

    Thank you Donald. It’s an ongoing struggle, isn’t it? Faith and flexibility are essential.
    MS

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