Survey Shows 'Invisible' Aspects of Rheumatoid Arthritis Are Difficult to Explain
According to Health Union’s most recent survey, “Rheumatoid Arthritis in America”, over 85% of patients (8 in 10) diagnosed with rheumatoid arthritis struggle to explain “invisible” symptoms. “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. 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,” said Carla Kienast, RheumatoidArthritis.net patient advocate.
The trouble with misunderstood symptoms
“Pain and fatigue are not always obvious. That's one of the biggest challenges people have around explaining their disease. So many people will hear you and say 'You look good' but not understand how you actually feel,” said Kat Elton, RheumatoidArthritis.net patient advocate. RheumatoidArthrtis.net is Health Union’s online community, which is dedicated to individuals living with rheumatoid arthritis who can connect, learn and share their experiences with others. “The fact that so many RA patients struggle with misunderstood invisible symptoms illustrates the need for a site like RheumatoidArthritis.net. It is a place people with RA can come together for support. In addition, it serves as a critical resource for the RA community to learn from each other and find the latest treatment information,” said President and Co-Founder of Health Union, Tim Armand.
RA’s complicated demands on patients
The Health Union survey included 3,607 participants and was performed June 1st through June 28th, 2017. The most common symptoms of RA among participants included: fatigue (89%), painful joints (88%), stiff joints (84%), as well as general stiffness or soreness all the way through the body (79%). Participants also reported symptoms such as reduced grip potency (70%), trouble sleeping (67%), and cognitive impairment (54%), as well as depression or anxiety (53%). Furthermore, participants said that RA has made an impact on their lives in more ways than one, including the ability to participate in demanding physical activity (70%), the ability to conduct household chores (64%), the ability to have a social life (59%), as well as the ability to work (55%).
What do RA patients discuss most with their doctors?
Survey participants noted that discussions with healthcare professionals included topics such as: medications (62%), flare-ups (59%), and progression of the disease (57%). 7 in 10 participants stated that they were being treated with a disease-modifying anti-rheumatic drug (DMARD) and more than 50% reported to having discussed with their healthcare professional within the last 6 months about taking additional medication. “Changing healthcare providers was a common theme among respondents. Our data shows that more than half of respondents had seen more than one rheumatologist over the course of their journey with RA. In some cases, patients didn't find their doctor to be helpful (31 percent) or felt their questions or concerns were not being addressed (30 percent),” said Tim Armand.
“Being part of this survey helps you see where you're struggling and gets you to ask questions like 'Am I really satisfied with my treatment plan?'” said Elton, who was diagnosed with juvenile arthritis (JA) at the age of 2. Juvenile arthritis is known as arthritis diagnosed in children under the age of 17, characterized by similar symptoms to RA, including pain, swelling, inflammation, and joint stiffness. Both JA and RA can cause damage to the lungs, kidneys, heart, and other organs.
Similar results from Crohn’s and ulcerative colitis patients
Health Union also conducted a survey on over 4,000 individuals diagnosed with Crohn’s disease or ulcerative colitis (UC). Similarly, the results revealed that several individuals diagnosed with such medical conditions struggle with symptoms such as pain and fatigue, as well as other invisible symptoms. Moreover, many reported to struggling to find a proper treatment plan. 57% of participants were misdiagnosed before receiving their current diagnosis, 31% were misdiagnosed with irritable bowel syndrome, 10% with Crohn’s disease were misdiagnosed with UC, and 5% with UC were misdiagnosed with Crohn’s disease. “I think many IBD patients are initially diagnosed with IBS because symptoms aren't severe enough to do more extensive testing. I also see many IBD patients initially diagnosed with ulcerative colitis, only to have Crohn's disease and vice versa. The conditions may seem similar, but this mistake can absolutely impact a person's treatment plan” said Marisa Lauren Troy, patient advocate.
The results from the survey also revealed commonly experienced symptoms, including: abdominal pain or cramps (81%), swollen joints (64%), night sweats (40%), and mouth sores (22%). Moreover, over 95% of participants wished individuals understood that they have an invisible disease and that they are in fact ill, even if they don’t look it. “The results of this study make it clear that these conditions are greatly misunderstood. The known symptoms are things that people don't like to talk about. IBD patients can easily become isolated. CrohnsDisease.com provides a forum for patients to come together and get the support they need. CrohnsDisease.com offers the latest information on new research and treatments bringing hope to the IBD community” said Co-founder of Health Union, Tim Armand.
Several patients with Crohn’s disease and ulcerative colitis are hopeful of future medications and treatment plans. “I think there is a lot of progress being made in the IBD world. I see new drugs in the works and, most importantly, more extensive research being done to hopefully identify certain genes or other individualized things that will hopefully allow for better treatment protocols” said Troy.
Coping with rheumatoid arthritis
Likewise, the RA Health Union study indicated that in spite of experiencing challenges, individuals with RA learn how to cope with their “invisible” symptoms by making lifestyle changes and taking on different alternative therapies. More than 90% use at least one form of complementary therapy – exercise, vitamins, heat therapy – while over 80% undergo customized dietary plans or change their eating habits for the better. “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. 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!” said Mariah Zebrowski Leach, RheumatoidArthritis.net patient advocate.
More about RA
More than 1.3 million Americans and over 1% of the global population are affected by rheumatoid arthritis. Rheumatoid arthritis (RA) is a chronic inflammatory disorder that occurs when the immune system mistakenly attacks the body’s tissues. Early stage of rheumatoid arthritis initially affects the small joints; however, as the disease progresses, symptoms may spread to the shoulders, elbows, wrists, hips, knees, and ankles. While rheumatoid arthritis mainly affects the joints - causing pain, swelling, inflammation, and eventually leading to joint deformity - it can also cause damage to the skin, eyes, lungs, kidneys, heart, and other organs.
Rheumatoid arthritis is the 3rd most common form of arthritis behind osteoarthritis and gout. Women are 3x more likely to develop rheumatoid arthritis as opposed to men. What’s more, women are more likely to develop the disease at a younger age as opposed to men. Rheumatoid arthritis typically affects individuals between the ages of 30-60. However, the average individual with the disease does not develop symptoms until they reach their 60s.
References
https://www.rheumatoidarthritis.org/ra/facts-and-statistics/
https://www.mayoclinic.org/diseases-conditions/rheumatoid-arthritis/symptoms-causes/syc-20353648
