Rheumatoid Arthritis Has Invisible Symptoms Leading to Late Diagnosis

Rheumatoid Arthritis Has Invisible Symptoms Leading to Late Diagnosis

By Staff

A survey of 3,100 individuals with rheumatoid arthritis (RA)—called the Rheumatoid Arthritis In America 2016—shows that initial symptoms are often invisible to others.

Receiving a diagnosis proved difficult with the average time between initial symptoms and RA diagnosis spanned four years.  In addition, people with RA note feeling stigmatized for often “not looking sick” and the unpredictable nature of the condition.

Rheumatoid Arthritis is a chronic disease that causes joint swelling, pain, and stiffness.  Approximately 1.3 million Americans have RA. Unlike the more common osteoarthritis, RA is an autoimmune condition, characterized by the body’s immune system mistakenly attacking healthy tissue.  The inflammation from RA also attacks other parts of the body including organs, bones, and soft tissue, such as muscle, ligaments, and tendons.

Because RA attacks the body internally, many of the symptoms are invisible.  Eighty-seven percent of respondents reported painful joints, 68% joint stiffness, and 64% both.  In addition, respondents reported other unseen symptoms, such as fatigue (60%) and general stiffness, soreness or aching throughout the body (58%).

The extensive and invisible nature of the symptoms makes RA difficult and often frustrating to diagnose. In addition to the four year average timeframe for diagnosis, 76%  of respondents saw at least three doctors and 54% had five or more office visits before receiving a diagnosis.

“RA symptoms can be caused by a variety of other conditions. In my case, I had a badly swollen elbow and was referred not to a rheumatologist, but to an orthopedic surgeon,” says RheumatoidArthritis.net patient advocate Carla Kienast. “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.”

Even though others cannot see the symptoms, they can have an overwhelmingly negative impact on quality of life for those with RA.  Seventy percent report these symptoms affect their overall quality of life. Some of the basics of life are affected, including the ability to exercise or take part in physical activity (77%), ability to perform family and/or household duties (71%), sleep (68%), and ability to work (62%).

In spite of these difficulties, RA patients are resilient. In addition to physician-prescribed medical treatments, many respondents use alternative therapies and made lifestyle changes to help cope with their unseen symptoms. Ninety-five percent use at least one complementary therapy, such as vitamins, exercise, or heat therapy.  Eighty percent changed eating habits or utilized a special diet.

“There’s no denying that RA presents some significant challenges when it comes to following my dreams and living the life I want, so I think the most significant lifestyle change I have made has been a mental one,” says RheumatoidArthritis.net patient advocate Mariah Zebrowski Leach. “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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Authored by: Staff

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Jean Price

RA truly can often be difficult to diagnose, as many other immune system and inflammatory diseases can present with similar symptoms, and sometimes the testing isn’t definitive. (There is a blood test for those ALREADY diagnosed, the VECTRA test, which measures the current disease activity level. Yet for some reason, it isn’t meant to be used to diagnose RA.). When we talk about RA, we’re talking about a “whole body” disease! Not only are joints affected, but also internal organs, and ligaments, tendons, muscles, and nerves. The key issue is inflammation…and Inflammation in general is hard on the body! Like RA itself, inflammation has been linked to heart disease and other medical problems.

Some people have what is called sero-negative RA, where their blood work won’t reflect a positive RA factor, or even an elevated sed rate. Yet they may have a high C-reactive protein level and joint damage occurring. (Other people may have a positive RA factor, yet not have the disease or any symptoms!) All in all, RA can be a progressive, painful, and debilitating disease. Yet with treatment, the symptoms can be lessened…and even its progression can be minimized with some of the new biologic drugs available now. It’s important to see a rheumatologist early in the course of symptoms, for diagnosis and for a treatment plan, and to be aware it is a disease which can affect family members also.

Some studies in Europe have shown a specific FIRST treatment of prednisone AND methotrexate has produced results yet ALSO remissions!! The patients treated have no reoccurrence even after discontinuing these treatments! I have had RA for a long time. And used a variety of medications to that it over the years. I wasn’t aware of this information when my daughter was first diagnosed over ten years ago when she was a young adult. Fortunately, her doctor used these same medications as in the study, (we don’t know whether it was just his usual routine or if his choice concerned this study). She did have an improvement of her symptoms for over a year. When she decided to start her family, she had to stop both of these medications beforehand. And miraculously she has had NO recurrance of her symptoms in the last nine plus years!! The study had emphasized these remissions seem to occur mostly in those who hadn’t been treated with a different medication plan before using this one.

I’m so thankful there are still people researching the cause and the treatment of RA…since it can be a very life limiting condition. And when it occurs in young children, their adult years can have all sorts of repercussions…both from the disease itself AND from the treatments they have had as children.


RA like many diseases even cancer cause untold suffering prior to “evidence based” diagnosis. These years cells are multiplying inflammation is destroying and patients are turned away, women told it’s fibro or depression it’s all in their heads. RA, IBD these diseases are diagnosed off of the damage they’ve caused. Earlier recognition is beneficial to everyone and every aspect of medicine.