The Rheumatoid Arthritis Diagnosis Mystery | Rheumatoid Arthritis Warrior

The Rheumatoid Arthritis Diagnosis Mystery

Mysterious flares

For me, a Rheumatoid Arthritis diagnosis was a very long process. From the teen years on, sudden painful flares attacked my hands, feet, hips, and shoulders – only I had no idea they were called flares.

The whole process seemed rather comical, like a scene from a Dick Van Dyke episode: healthy girl falls down as hip goes out from under. There would be raised eyebrows as I limped for a few days, and then I’d feel fine. I was tired a lot, but I was a busy mom with thyroid disease, so that was easy to ignore.

The flares in the shoulders and feet were more painful. But they were considered no more serious to doctors or others to whom I confided. As a matter of fact, the worse the flares, the less I confessed. It can feel humiliating to have doctors accuse you exaggerating. A normal sed rate assured the doctors that my problem was psychological.

Finally, a Rheumatoid Arthritis diagnosis

About four years ago, that all changed. One joint after another flared, but it did not get better. The joints fell like dominoes until every one of them had fallen. There was also the fever, the weight loss, the flushing and rashes. The mystery for me is now solved: somehow, the birth of my last child triggered a case of Palindromic Rheumatism or mild Rheumatoid Arthritis to become “full blown” severe RA.

The years of my mystifying complaints of painful flares with no diagnosis taught people around me to ignore my mysterious illness. However, the flare that came over four years ago and never subsided forced me to solve this mystery. Several humiliating doctor visits later, my mystery was solved with a Rheumatoid Arthritis diagnosis.

I had no idea what that meant or what to do next. Into the trash went piles of printouts from the internet – my research trying to solve the mystery of my non-RA that turned out to be RA. Being a newly diagnosed Rheumatoid Arthritis patient was a whole new mystery.

Newly diagnosed with Rheumatoid Arthritis Mall Map

For the last few weeks, in between blog posts and homeschooling, I’ve worked on this project. You can have a look at the New RA Map here. I know nothing can make an RA diagnosis easy, but I hope this helps someone erase some of the mystery. One more section will be added soon, but I’m happy with the way it turned out.

Postblog: Have a blessed Easter.  

Recommended reading:

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

21 thoughts on “The Rheumatoid Arthritis Diagnosis Mystery

  • April 2, 2010 at 10:09 am
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    I think you are amazing Kelly! Thank you for all that you put into this and I’m sure there will be a lot of people out there that will benefit! I know I’m spreading the word on your site – when I was first diagnosed over 8 years ago I had no idea where to go for accurate and more importantly to me, first hand information. Hope you and your family (as well as all you RA Warriors out there)have a wonderful Easter filled with lots of light, love, and laughter! (and I hope it is a comfortable one for you all) Jamie

    Reply
      • April 2, 2010 at 2:34 pm
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        Kelly, I too want to Thank you. I have learned more from your site in one week than I have learned throughout this entire Journey/since diagnosis. You truly are a leader and once again, Thank you for making this possible. I have had symptoms for years also. I reached out to Doctors, only to be told that blood tests showed that I did not have RA. I shared that an eye Specialist/Doctor took one look at my eyes after months of strange so called eye infections and said, “Is RA in your family history”. He was almost certain that he was seeing “Sjogren’s Syndrome”. That was ten years ago. I shared that my Maternal side of the family, Grandmother, Mother and Uncles all had/have the disease. Still, I was made to think that I was crazy. So many flares and so much wasted time. I too became able to mask the pain and tolerate more than most. I can go back now and see that this disease was rearing it’s ugly little head since my pre teens. You are an amazing Woman. You give me strength and hope and I am so Glad to have found you. Afterall, it was meant to be. We share the same last name!!

        Reply
        • April 2, 2010 at 9:56 pm
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          Char, I’m sorry any dr acted like you were crazy. I hope that we can change this for the next generation.

          Thank you for the encouragement. 🙂

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  • April 2, 2010 at 12:48 pm
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    Kelly, you’re so much more than a blogger, you’re a leader acting as an assistant to the RA community. Much love to you for all your hard work!

    Reply
  • April 2, 2010 at 3:31 pm
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    Kelly, your arthritis mall map is a gift to newly diagnosed RA warriors. My diagnosis came only 6 months ago after 12 years of symptoms so I feel qualified to speak for the new warriors. It is the most informative source out there that I have ever seen and I have searched a lot for answers and support. God has given you a gift and you have generously used it to educate and support RA victims. Thank you on behalf of myself and all the newly diagnosed. You are the greatest.

    Reply
    • April 2, 2010 at 9:58 pm
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      Kay, How can I thank you properly for such sweet words? :rainbow: Thanks.

      Reply
  • April 2, 2010 at 4:49 pm
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    Kelly,

    Your Newly Diagnosed RA Map is A W E S O M E !!! I think it should be made into a brochure with copies (and LINKS to rawarrior.com) in every rheumatologist office anywhere!

    What a tremendous gift you have given to everyone affected by RA. You have put a lot of time, research, forethought, and effort into making this great resource available.

    Thank you!

    Caysea

    Reply
  • April 2, 2010 at 6:08 pm
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    Excellent job Kelly! A very valuable tool for the newly diagnosed.

    Reply
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  • April 3, 2010 at 2:54 pm
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    When I finally got my diagnosis it was a relief. I had felt like I was crazy. I knew something was weird and wrong with me. Thankfully mine didn’t take as long to get a diagnosis, probably because my Dad has RA as well. Since my symptoms weren’t horribly severe, it took me awhile to realize the depth of what my diagnosis meant. I am just trying now to be thankful for each good day. 🙂

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    • April 5, 2010 at 7:08 pm
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      Dear Erin, here’s hoping that treatment keeps it that way (not severe)! :heart:

      Reply
  • April 5, 2010 at 8:32 pm
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    I was diagnosed in Sept 09. I was so happy to finally have someone put a name and a reason to why I had been feeling miserable for so long. After reading so many stories I realized that some of my symptoms started years ago. It wasn’t until about a year after my second child was born that I was feeling the full blown effects. And it took another year to be diagnosed correctly. I am still in the process of finding the right combination of medications. I have a feeling this is going to be an ongoing process. I have found comfort in this site. The side effects from some of these medications seem worse than the disease some days. I am so glad that this site has so many resources and so much information to ease the discomfort some days. Just knowing that I’m not the only one helps.

    Thank you so much for your hard work Kelly! It is much appreciated from this girl! I have found so much useful information on your site and have passed it onto my family so that they can be educated also. You are an amazing gift to all of us!

    Reply
    • April 6, 2010 at 3:21 pm
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      Annette, I’m sorry it took so long to be diagnosed. Thank you for your kind words. It helps me also to know I’m not the only one. Hopefully, we can make it better for future patients to be treated earlier.

      Reply
  • June 27, 2012 at 2:56 pm
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    A year ago I had severe stiffness in hands, knees, ankles which led to a diagnosis of Rocky Mountain Spotted Fever from a tick bite. I was treated with doxycyclene and was over it in 30 days. About a month ago I had all the same symptoms reappear…went back to the doctor and the doctor tested for arthritis…came back negative. He couldn’t test me for tick fever again because it would be postive anyway. I was put on doxyclene, but I didn’t get better. Was given a steroid shot and put on predisone…and I did get better. He feels I have RA and I am waiting to see a rhuematologist…it’s taking me about 3 months to get in as a new patient. My symptoms have been a droopy eylid that is worse in the morning and very stiff fingers. Other symptoms have gone away since the shot and continued predisone. I tested negative for all types of arthritis, but regular MD feels I may be seronegative. I am wondering if it is common that Rocky Mountain Spotted Fever can lead to RA? Any ideas? Thanks….

    Reply
  • October 14, 2013 at 7:07 pm
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    I was in a diagnostic quandary for years. My symptoms started in childhood, went into remission as a teen and came back with a vengeance after my Son was born. My RA factor was either negative or mildly positive as an adult with an occasional low level positive ANA. I went from being diagnosed and treated as a child to becoming a “all in your head’ patient as an adult.
    I always had a sed rate of 0-2 and that is what lead to my diagnosis, it turns out I have a rare blood disease called Polycythema vera I have too many red blood cells and they use up the sed rate in their cell division. I ended up getting a definitive diagnosis from an ultrasound of my hands and because I have inflammatory eye disease I’m now on Humara and doing well, but a lot of damage was done in the meantime.
    The point of my story is don’t give up and don’t let you’re medical providers give up, it took 30 years but it was so worth the journey both to get control of my RA and also to restore my self esteem. Good luck to all still searching.

    Reply
  • February 10, 2015 at 11:42 am
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    I completely understand how you feel. The trips to a rheum who only felt my hands and said, “No swelling, no RA. It’s only your fibro.” How many times I banged my head against a wall. Now, I get to go through the same thing with my 16 yr old daughter. Awaiting blood results now. <3

    Reply
  • April 12, 2016 at 2:11 pm
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    Hi Im Dianee, I was finally diagnosed in Nov. 2015. To that point I had been misdiagnosed, and experiencing R.A. symptoms for 1 1/2 yrs. I know that is short compared with a lot of other people’s story.
    I was prescribed Prednisone- 10 mg. daily or 20-30 mg. with flares. I was also prescribed Methotrexate. It took me over a month, before I decided to take the Methotrexate.
    I get some relief when I take 30 mg. Prednisone with the weekly dosage of Methotrexate. The biggest misconception I had was that I thought if I took my daily, weekly medicines that I would be much better. Well. that isn’t true. If I continue the daily dose of 10 mg. Prednisone, and weekly Methotrexate I am not better.
    Some how I foolishly thought that maybe the R. A. would take a few days off now and then. But No, its a daily process to move around and Function. As has been said by many, our families and friends cannot or will not try to understand our seemingly invisible disease.
    One symptom that I have, but have not seen discussed here is a burning pain behind my eyes that comes along right before or with the pain, stiffness, EXTREME EXHAUSTION, swelling of joints, and low temp. fever. I have been for a very thorough eye exam. They could not figure out anything about the pain and burning behind my eyes with Flares. Has anyone else experienced this problem ????

    Reply
    • July 22, 2016 at 2:14 pm
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      If your eyes are dry when they burn it could be sjogrens which is common with RA / RD. http://www.rawarrior.com/tag/sjogrens-syndrome/

      For some people the disease does take days off or get somewhat better with medications. I’m sorry you are like many others of us who just see it worsen. Hopefully you can find a medicine that works better for you.

      Reply
  • February 16, 2018 at 11:21 pm
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    I only just saw a rheumatologist earlier this week, and she suspects I have RA, though fortunately caught “early” – before any severe joint damage has begun… Though I’ll admit, it doesn’t feel “early” for me. I’ve been having more and worsening pain for years now, and fatigue for two years straight. My GP (reasonably) thought it likely just poor sleep hygiene, but once I started having nightsweats she drew labs for CRP and ESR which came back elevated. (My initial concern was cancer – the boogey man that killed 3/4 of my grandparents as well as my own father). After looking into autoimmune hepatitis (because of a positive SMA), TB (because of a positive PPD) and some others we finally drew an arthritis panel and got the positive anti-CCP result. When I told my mother I was going to have to see a rheumatologist I was grinning, she said, “I’ve never seen someone so happy to learn they might have RA.” I told her, “If you’ve been in pain and tired for as long as I have and felt like no one believed you, you would be happy too!” – I finally had hard evidence that it wasn’t all in my head (though my anxiety about my pain and lack of diagnosis almost certainly made things worse). Even though no one WANTS an autoimmune disease, it is vindicating to know you weren’t just being a hypochondriac.

    Reply

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