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Why did it take so long to diagnose RA???

Back when I first began to have some early signs of RA, it was very difficult to diagnose what was going on with me…at least that is how I now rationalize why it took over a year from my initial symptoms. My family and I had suffered the tragic loss of our baby girl, Kelly, who was stillborn. Coupled with that grief and pain were these random large joint pains I would get…shoulder would be really stiff and painful, my neck would be painful, my hands were a little swollen and tender, I was tired all the time but could not sleep. Doctor after doctor said it was likely related to the pregnancy at age 40 and the loss of our baby. In other words, it was all psychological.

At first I bought into that because my grief and fear and inability to sleep clouded my own judgement. But after several months, the symptoms became more overt till finally one day my hip hurt so bad I could not put weight on it and our family doctor referred me to the Rheumatologist I see today. These two doctors saved my life. They recognized that the pain I was experiencing was real and began to treat me – albeit a year+ after my first symptoms. This is NOT unusual with RA partly because it does often manifest slowly and without swelling or redness till you are well into a “flare” or period of RA activity.

The key is to not let anyone tell you that it is “in your head” how ever kindly they put it. My husband once told a doctor “Look my wife gave birth, naturally, three times to boys who were all over 9 pounds each so if she says she is in pain, SHE IS IN PAIN!” Although that may have convinced that particular doctor I truly had a medical issue, he had no idea what was going on. I was tested for Lupus, Lyme disease, MS, IBS, Chrons Disease, Sciatica, Firbromyalgia, Chronic Fatigue Syndrome, just to name a few.

In addition, diagnosing RA is not easy anyway. Until you have the overt signs of joint swelling, redness, morning stiffness, pain, etc. it is tough to make that call. There is a blood “marker” which if you have it makes you RA+ but at least 25% of folks with RA are never RA+ and I was not for the first two years, also not uncommon. Eventually other signs, blood markers that indicate inflammation levels, etc. will make it a more concrete diagnosis but in the beginning not so much….

Several lesson for me came out of this. First, don’t give up till you find out what is wrong! The absolute worse time is the period of not knowing what is wrong with you medically. So once that diagnosis is made definitively, as bad as the news was, I was actually relieved to finally know WHAT it was! It was real, not in my head and so now lets deal with it.
Another lesson was that I had really been very lucky health wise my whole life, nothing worse than an occasional sinus infection so I had no idea that a disease could be so elusive to determine. That medicine is not as precise and immediate as an ear ache or a broken bone. That lesson has served me well throughout the management of RA as well.
Another really critical lesson, find a doctor you can trust, who you “click” with, and who you can respect (more on the doctor-patient piece later).

Lastly, let your family in on this process. Let them help you find who you need, be there when you tell the doctor your symptoms, etc. This was a hard lesson for me. I am used to being very self sufficient as my family will tell you, so I thought I could make the rounds to different doctors till I got it figured out without bothering my family. NOT a good idea. You need to let your family help. The more you shut them out the worse your pain and the harder the whole process becomes. Once I accepted the help offered it made the doctor’s visits so much more bearable and the person with you is there to add to the discussion which is very beneficial on so many levels! My family and friends were instrumental in getting me through the early stages of RA and to this day are my biggest sources of comfort, support and of course joy!

Hug someone you love today remember to laugh!

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


  • cdriver
    3 years ago

    I loved reading your story. I am having a really difficult time dealing with no definitive diagnosis. I wake up almost every day and something new is happening to my body. I thought my ankles and feet were swollen before but now they are huge. I cannot even put on the one last pair of shoes I could fit into. Every day it’s something new. I see my rheumatologist for the first time June 20th. I just want to know what is happening to me.

  • Andrew Lumpe, PhD moderator
    6 years ago

    So sorry it took so long to get dx’d. This seems to be par for the course with many autoimmune diseases. Thanks for the well written story and all the best to you as you battle this nasty disease!

  • Mariah Z. Leach moderator
    6 years ago

    Nan – Thank you so much for sharing your story, especially a story so personal and full of so much heartache. I’m so sorry you had to experience a delay with your diagnosis. That must have been very difficult to go through. But I’m so glad that your husband is so supportive and advocates for you!! I think that you are right that having a diagnosis helps a lot, because then you know what you are dealing with. And finding a doctor who listens to you and understands your goals is SO important! I admire your optimism and I hope that you are able to keep it up!

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