What Makes Diagnosing Rheumatoid Arthritis So Difficult? | Rheumatoid Arthritis Warrior

What Makes Diagnosing Rheumatoid Arthritis So Difficult?

Why is it so hard to get a Rheumatoid Arthritis diagnosis? People ask me that all the time. Why don’t we watch the mini-movie and then we’ll talk?

Video on referrals for Rheumatoid Arthritis:

There are some familiar themes there:

Minimizing:

Rheumatoid Arthritis patients report that healthcare professionals often underrate their symptoms. Sometimes, it is as if doctors are hard of hearing. But, other times it can be worse: they can intentionally discount the patient’s descriptions of the disease. Did you hear the lady say that her doc thought her just a “neurotic teenager”? I know one person with RA who was sent to a psychiatrist instead of a rheumatologist. I have actually seen doctors scoff about RA.

Ignorance:

Astonishing as it is, even many physicians are unable to recognize Rheumatoid Arthritis when confronted with the symptoms. They may not know that many people with RA are seronegative, like another woman in the video. They frequently have misconceptions of Rheumatoid Arthritis. Otherwise, they may rely too heavily upon the ACR’s 7 guidelines.

Under-diagnosis:

Concerning Rheumatoid Arthritis, misdiagnosis is consistently “under-diagnosis.” Doctors tend to look with skepticism upon portrayals of RA which sound dramatic or extreme. (Who could believe someone could live with this much RA?) This tendency can cause doctors to “miss” Rheumatoid Arthritis entirely, seeing instead less serious conditions.

Consequences:

Some patients in the video stated that they were made to feel that they or their illness was unimportant. While that infuriates me, I actually have more grave reasons to protest. This is about more than hurt feelings. Here are some other consequences:

1) When doctors do not accurately hear what Rheumatoid Arthritis patients recount, it results in delay of an accurate diagnosis of RA. Of course this means either lack of treatment or an inappropriate treatment. Remember the dear mum in the video who was forced into an exercise program to treat her RA? If she had had another condition, instead of RA, she might have improved. However, it made her worse BECAUSE SHE HAD FULL-BLOWN RHEUMATOID ARTHRITIS.

2) If symptoms are not accurately heard, they cannot be accurately recorded. This may hurt the patient’s position with future providers, with long term disease management, and with insurance issues regarding treatment options.

3) Rheumatoid Arthritis is believed to cause permanent damage even during the first months of being symptomatic. Patients are permanently harmed when doctors refuse to hear them and do not refer to specialists or begin treatment.

4) Finally, I believe that one reason scientists can’t find a cure to Rheumatoid Arthritis is that the disease process is not entirely understood. It is impossible to cure what we do not understand. Failing to listen only exacerbates this problem.

Bewildering, huh?

Dangerous thought: what if doctors were hired based on whether they could find the right diagnosis… like plumbers and electricians? Would that help?

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/

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18 thoughts on “What Makes Diagnosing Rheumatoid Arthritis So Difficult?

  • July 22, 2009 at 12:26 am
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    These stories seem all too common. I want to back up even further and speak to the lack of knowledge by the general population (one of your purposes for your blog). I suspect that many people start suffering symptoms, especially if they come on over a period of time and don't see a doctor. While some people know about joint disfigurement, especially in the hands, most people don't know about other RA symptoms like fatigue, eye problems, tendon tears, etc. I thank God that once my symptoms starting coming all together, I was able to read about it and make an appointment with my internist. He quickly put the pieces together, order blood tests, and sent me to a rheumatologist who commented that the internist was a smart man.

    Reply
  • July 22, 2009 at 4:03 pm
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    This makes me so thankful for my family practice doctor. I went three weeks from my first appointment with him to my first appointment with my rheumatologist and subsequently starting my treatment plan. The onset of my symptoms to starting my meds was three months. I understand now how incredibly lucky I am!

    Reply
  • July 22, 2009 at 4:34 pm
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    There are several good comments to this post which have been posted on the Facebook page for the blog. You might want to stop by there, too if you are interested seeing in more comments on this blog.

    Reply
  • February 19, 2010 at 2:17 pm
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    I can’t disagree with anything in the movie or in the comments. However, I would point out that it sounds like all these people are British and probably under their National Health Service. With my private insurance in the USA I didn’t have most of their problems.
    I do understand the steps though: it’s all in your head, doctor not hearing you, telling you to get in shape – I’ve been there, but was able to expedite things due to my insurance.

    Reply
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  • August 26, 2010 at 12:19 pm
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    Kelly, just a note to let all know that I have a new Rhuemy doc. She is very informative and has answered a lot of questions for me. One being about seronegative. She told me that while other indicators are say I have inflammation the RF test is still negative. But clinically I have RA. She has discovered that some of her sero negative patients have the worst cases of Ra. I found this interesting, because a lot of information on the net say that sero negative is usually not has bad, or have worse outcomes than a positive ra factor. I think this was very interesting. I have always heard that medical information on the web is at least 5 years old.
    Thanks Kelly for being there for so many.
    Warmly, Steph

    Reply
    • August 26, 2010 at 12:38 pm
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      Thanks for sharing that good news. Sounds like you have a good doc. I agree with her fully on this. That is so good you have someone now who understands it & can treat you. I know when others read your comment, it could help them.

      Info on the web: there are lots of different kinds of info. Some info from studies is only weeks or months old. Some is very old. What I’d be worried about would be relying on sites that are not updated frequently – and how would a patient know? Sometimes sites have errors – even hospital sites. We have to confirm information with more than 1 or 2 sources. It’s a lot of work isn’t it?

      Reply
  • November 1, 2011 at 10:00 am
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    I truly appreciate what these patients went through.. I myself went through it. My first rheumy doc was very interested in my case, when I was positive and very active. but once I went negative… that was it! He acted as though my rheumatoid symptoms weren’t strong enough to be bothered with me… and treated me as though my pain was in my head so to speak. I was so hurt!! I finally after giving him 3 trys and telling him that I didn’t have any flares…decided to leave and go to a new rheumy doc… so far so good. I will have my 4th visit with him soon. He doesn’t know I have Uveitis yet!! He knew about the red eyes, he was first to see them… gave me antibiotic drops. Cleared up, then came back! That’s when a opthamologist treated with mega steriod drops!! He then told me if it came back he was getting to the bottom of it. What Autoimmune disease was causing the attack. Finally, someone believes me!! Too bad it had to come with a blast to my eyes.. 🙁

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  • July 9, 2012 at 11:39 am
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    I am so frustrated. My rheumy seems pretty thorough, but so far my diagnosis is “Unspecified inflammatory polyarthropathy” and “cervicalgia” and “effusion of joint, lower leg” and ” trochanteric bursitis ” ( bilateral) All my bloodwork is within normal limits.

    I am not managing my pain very well. I take Ultram, but I don’t know why, it really doesn’t help. The only thing that makes me feel better is prednisone, which my rheumy only gave me as a taper for three weeks, and steroid injections in my hips. This leads my rheumy to believe that I have an auto-immune arthritis, but he is not sure what it is.

    I have never experienced this kind of fatigue! it’s like I am too tired to think or read or watch TV sometimes. My feet hurt and my entire right leg is really killing me, my hip, knee and ankle are all throbbing. My knee and ankle swell, but it is hard to tell if my hip is swollen, as I am a curvy lady. So far, my hands are fine. Could I have RA ? Is it possible to always be seronagative and still have RA ?

    Reply
  • July 9, 2012 at 7:08 pm
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    After a visit to my Rheumy today I need to vent. I was diagnosed in 2001 after a bout of severe fatigue, fever, and aching joints. I saw a good Rheumy who did lots of bloodwork and x-rays. My RF was positive and I started trials of two weeks each on various anti-inflammatory meds. He wanted to start me on Methotrexate but I was too scared of it and refused. Nothing really seemed to help and although he told me I’d be in a w/c in 10 yrs. if I stopped treatment, I did. I fared pretty well for 4-5 yrs. with only occasional flares. Then in 2007 wham! it was back with a vengeance. Living in another state then my MD sent me to a great Rheumy who confirmed my RA and also diagnosed Fibromyalgia. I was started on Methotrexate and did fair. She later moved away and I had to stop working and lost my insurance. The past four years have been horrible seeing two new Rheumys both who dismiss my complaints and have said exercise, lose weight, do Yoga, try relaxation techniques and stop Methotrexate. I have done all and guess what I hurt constantly. Today my Rheumy said “It looks like you are doing well, we can just see you back as needed”. I asked what about my L. shoulder and elbow pain, numbness and sharp pains in my L. leg? She touched lightly on spot on my elbow and I showed her where it hurt, can hardly stand to touch it. She said you have tendinitis and bursitis in your hips and “You do not have RA but have Osteo, your blood tests do not show RA.” My last visit she told me my RA was in remission. I asked why I had been positive for over six years and she replied, “That is because you have a family history of RA”. I have heard it all! I have been a nurse 26 years and am not an idiot. I am so frustrated. She said all I can do is take my meds… which was Lyrica TID, which she changed to one a day, and Hydrocodone recently prescribed by my Primary because I was unable to sleep due to extreme pain and he didn’t want me on Ambien. He had also had me stop taking Mobic. I am taking nothing to prevent progression and already have nodules on my fingers, yet my Rheumy says that is from Osteo. I am so very frustrated. I hate meds and have tried so hard to stay off them as much as I can and now it’s like they just don’t even hear me. OK there’s my rant. I’m wondering if it’s because I only have Medicare as I finally was approved for disability last fall. After working since I was 16 is this the health care I get stuck with?!

    Reply
  • July 10, 2012 at 7:40 am
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    I have been suffering with pain for 3 years and my doc has put me on several pain meds and he thought my problem was neurological and sent me to neurologist, just last month June, that actually looked at my recent labs and noticed my ANA was low. She has done more blood tests and told me to tell m GP to refer me to Rheumo Doc. Still waiting for results of tests and I’m still in a lot of pain. I have the same problems with my doc. He doesn’t listen to me and I feel as though I’m wasting my time complaining about a little aches. And, If I would lose weight I would not have this problem and rolling eyes. I took a chart the second visit with this doctor and he glanced at it and shook his head and gave it back. I feel like I’m dying and no one cares. Hopefully he will give me the referral and I get treated properly and finally get some help! Thank you for having this blog. I’m glad I’m not the only one with these doctor problems! Alicia

    Reply
  • February 9, 2013 at 1:12 am
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    In the video, the second woman describes how her primary care physician claimed that she was just a neurotic teenager who was upset about her poor career choice and he delayed her referral to a rheumatologist.

    Imagine if her doctor could have diagnosed her with a psychiatric condition that explained her neurosis? A diagnostic category (SSD) that has important implications for people with rheumatology symptoms is making its way into the American Psychiatric Association-Diagnostic and Statistical Manual-V (DSM-V). Somatic Symptom Disorder is frequently inked with rheumatic conditions in the literature.

    Often SSD is identified as the diagnosis if the medical professional determines that the reported symptoms have no reasonable medical explanation or there is a diagnosed medical condition but the patient is pre-occupied with the disease or exaggerating symptoms. This is a very subjective diagnosis that will delay proper medical tests and treatment. In fact, the recommended practice when SSD is diagnosed is for doctors not to order investigative tests but to reassure patients that they are fine.

    Please consider signing this petition that asks that the authors of the DSM-V not include the Somatic Symptom Disorders (SSD) in the latest edition of the DSM.

    http://www.change.org/petitions/the-american-psychiatric-association-and-dsm-5-somatic-symptom-disorder-ssd-is-too-vague-to-be-published-in-dsm-5#share

    For further reading on how SSD misdiagnosis is related to RA see:

    http://www.healthcentral.com/rheumatoid-arthritis/c/80106/158680/ill

    Haven’t we progressed enough that patients should reasonably expect that their rheumatology symptoms will never be mis-labeled as a psychiatric condition??

    Reply
  • May 28, 2013 at 11:32 am
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    I was tested for RA and it was negative. My Primary Care Dr said that it must be RA! So he is sending me back to that same Dr. I have been in pain for 9 months now and no Dr has found anything wrong!

    Reply
  • May 29, 2013 at 9:50 am
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    I’ve been in pain since Aug 2011. My internist takes me seriously, and did all the testing. Everything was negative, but the anti-CCP was elevated enough that she called and said I had RA, and sent me to a rheumatologist.

    First thing the rheum did was repeat all the blood work I’d JUST had done, and it all came back negative. So in his opinion I don’t have RA, never did, and that’s that. The fevers I run every day? They’re never over 100.5, so they’re not fevers. The sweating? The fatigue? The never-ending pain? Apparently they’re not real. At least he can’t blame it on menopause, since I had a complete hysterectomy and ovariectomy almost 20 years ago.

    The rheum is such a jackass that I fired him. He wouldn’t listen to me, and was completely dismissive of my symptoms. “You have some kind of chronic pain disorder, but it’s not RA,” he told me when I asked him why I hurt all the time, in joints normally affected by RA, and never in muscles.

    I’m not crazy. I’m not a drug seeker. I’m not a hypochondriac. My hands, wrists, ankles and knees hurt every single day. I sleep more than I ever have. I get tired incredibly easy. I run low grade fevers. I sweat so much I soak my bed. I’ve also always been very alert to changes in my health, which has often allowed treatment to begin before things got out of hand. I have a high pain tolerance, which is why it took me from August 2011 until March 2012 to mention something to my internist.

    She says it’s RA. I believe it’s RA. How in the world, though, will I get proper treatment if a rheumatologist doesn’t believe me?

    It almost makes me feel like it’s not even worth pursuing anymore…

    Reply
    • May 29, 2013 at 12:41 pm
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      Dear Lorri,
      I’m sorry he was a jerk, but I’m glad you were empowered to know not to put up with that. I’ve seen this happen so many times. And I’ve been where you are too, so here’s my advice to you and anyone in this situation.

      If the symptoms don’t subside (I know we both wish they would), when you’re up to it, see another doctor for a second opinion. If possible, find a doctor by asking other patients who is good, or at least ask the practice what percentage of the people they see have Rheumatoid. Also, see if they will tell you whether the doctor has an aggressive treatment approach, or bases decisions on blood tests, and whether s/he uses ultrasound to examine joints, or whether he/she attends the ACR scientific meeting. None of those are a guarantee to avoid the dismissiveness you experienced that seems to be extremely common, so my final advice is to bring someone with you who you trust. Having a witness can make a difference sometimes in whether s/he examines properly, although that’s not a guarantee either.

      As I said, I’ve seen this many times – and often – you will read here in comments that when a person finally finds a good rheumatologist, even after a few tries, then they respond to treatment and end up doing well. But you’ve been reading RAW for a while, so I’m sure you know that early treatment is supposed to give you the best shot at a good treatment response.

      Reply
  • February 14, 2014 at 3:07 pm
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    I have been sent to a RA but I’m not sure I have RA. Yes, i do have OA, and my hands are swollen and I have joint pain, but I don’t ever run a fever, my stiffness isn’t all that bad in the morning. I have stiffness if I sit to long but once I get up and move I’m fine. I have plantar — in my feet but never at the same time. I have pain in my feet, around the last 3 toes on my right foot but hardly ever in my left. I’M SO CONFUSED!! All blood test are always negative, yet I test positive for Lupus and the dr’s say i do not have lupus, because I have no symptoms. I AM SO CONFUSED. I have fatigue at times so bad I can’t stand up. Yet other days I can go like the energizer bunny. I am just so confused!!

    Reply
  • May 11, 2016 at 12:12 pm
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    I want to thank you so much for sharing your story I’ve been suffering with a lot of pain the last two I’ve been told a lot of different things with fibromyalgia to osteoarthritis 2 blah blah blah. I’ve also complained of severe chest pain of course I got sent to the emergency room for possible heart attack? But that still didn’t explain why to touch my chest wall hurts so bad I’ve had so many s***** uncaring on knowledgeable Medical idiots bounce me around make me feel like I’m less than a loser a liar over exaggerating a drug addict just trying to get something so forth and so on. I’ve actually called to get a position in different states my husband moves around a lot because of his job and we’re told multiple times you have too many issues? He won’t take you. Long story short finally got an x-ray on my lower spine sure the f*** enough it’s crooked as hell all my joint pain shots and my knee caps bruised chest plate aching back from butthead legs arms feet bone spurs all of this crap that I’ve been diagnosed with over the years you think if someone with an educated I looked at all the symptoms and then some would have figured the f*** out what I had. I’m beyonddisappointed and system. I could just go on forever I don’t know crap about this monster disease but I’ve read enough to know that education for the medical profession is extremely lacking. Now I’m left with…….. I don’t know I’m learning as I’m sorry if my grammar is incorrect on here I have to a spell microphone I left school at 8 grade completely illiterate come to find out I have the most severe ADD there is. I might not be the brightest crayon in the Box but I can see now how every professional in my life has completely let me down and that is a scary f****** thot

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  • July 8, 2017 at 4:29 am
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    Okay. Went to pediatric rheumatologist a couple of weeks ago. Got sent there from my neuromuskular doctor because he said that the only thing that my symptoms could be are jra. Got to the rheumey, she moves my joints in every pain way possible. Do you want to be touched at all when you are in a lot of pain? NOOOOO!!! When I ask her that does she listen? Nope. She thinks that the extreme pain from what she already did is pain from light touching. I ask her if she would like to be touched while in serious pain and she answers that we r crunched on time. She did order tests For the lab. Now they think I have amplified pain syndrome. NOOOOOO!!! NOW I NEED “serious psychiatric help. You know? To help with psychosis?” UGGGG HELP MEEEEEE

    Reply
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