4-Year Delay in Diagnosis Common for Rheumatoid Arthritis in US, Patient Survey Finds

4-Year Delay in Diagnosis Common for Rheumatoid Arthritis in US, Patient Survey Finds

In a recent survey, rheumatoid arthritis (RA) patients reported having six or more symptoms that affect multiple parts of the body, and of waiting an average of four years before being properly diagnosed with the disease.

Health Union collected data from over 3,100 people with RA in a survey called Rheumatoid Arthritis in America 2016.

Results from the survey showed that 76% of the respondents reported seeing at least three doctors before being diagnosed with the disease; 54% had five visits before a proper diagnosis. Primary symptoms included painful joints (87%) and stiff joints (68%), and a combination of both (64%).

Respondents also reported an overall negative impact on their quality of life (70%), even though the symptoms were not outwardly apparent to those around them. According to the results, basic activities are greatly impacted by RA, including the ability to: exercise or take part in physical activity (77%), perform family and/or household duties (71%), sleep (68%), and work (62%).

Because RA, as opposed to osteoarthritis, is an autoimmune disease and causes a variety of inflammatory reactions in the body, the symptoms are more atypical.

RA inflammation can attack bones, organs, and soft tissues of the muscles, tendons and ligaments. As such, RA affects the body internally rather than externally, which is often overlooked by those unable to physically see the symptoms.

Other “invisible” symptoms include fatigue (60%) and a general stiffness, soreness, or aching throughout the body (58%).

In a press release, Carla Kienast, patient advocate from RheumatoidArthritis.net, said: “Many RA symptoms like pain and fatigue aren’t visible. It’s no wonder we get comments like, ‘You don’t look sick.’ In addition, the disease is so unpredictable that it’s difficult for people to understand that we may be able to do something one day, and not be able to accomplish the same task the next day.”

A further complication in accurate RA diagnosis is that the symptoms may also be caused by other conditions. For example, Kienast suffered a swollen elbow and was referred to an orthopedic surgeon.

“The continuing pain and swelling led to a surgery I probably didn’t need. It wasn’t until a second orthopedic surgeon finally referred me to a rheumatologist a few years later that I was finally diagnosed and started receiving treatment,” she said.

In dealing with their RA, respondents reporting not only used prescribed treatments — 95% also choose alternative or complementary therapies, such as vitamins, exercise, or heat therapy. Additionally, 80% changed eating habits or altered their diets by increasing hydration, avoiding or limiting sugar, and avoiding or limiting processed foods.

In spite of the difficulties and obstacles for RA patients, most seem to adapt well and to be resilient. As RheumatoidArthritis.net patient advocate Mariah Zebrowski Leach said: “I have accepted the realities of RA as a part of my life, but I haven’t allowed RA to be the determining factor when it comes to achieving my goals. I like to say: I have RA — it doesn’t have me!”

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