This post is part of a paid sponsorship by Regeneron and Sanofi. All opinions cited are my own.
According to the Arthritis Foundation, Rheumatoid Arthritis is an autoimmune disease, affecting approximately 1.3 million Americans (https://www.rheumatology.org/IAm-A/Patient-Caregiver/Diseases-Conditions/Rheumatoid-Arthritis ).Though individuals diagnosed with Rheumatoid Arthritis (RA) may experience stiffness, painful, swollen, and “hot” joints, fatigue, and fever, I have discovered during 40 years of physical therapy (PT) practice, it is the emotional, unseen symptoms that are the most difficult to recognize. My background with this population seems to completely jive with results from a recent patient survey of 1,004 self-reported RA patients conducted by Regeneron and Sanofi. The survey’s objective was to examine “What is the emotional impact of the daily struggles, frustrations, and triumphs of what it means to live with RA?” The results give a remarkable and perhaps surprising glimpse into what living with this chronic disease is truly like, and gives us insight for greater understanding and pointers for improved treatment and support.
“I don’t think anyone is listening to me.” 61% of people with RA were frustrated when family or friends confuse RA with Osteoarthritis.
Perhaps the most significant challenge my patients with RA have expressed over the years is that the diagnosis of “arthritis’ is so far-reaching and often misunderstood. Even the Centers for Disease Control (CDC) website lumps osteoarthritis (OA), gout, lupus, fibromyalgia, and RA statistics together on one page. Truth is, the disease process, symptoms, and prognosis could not be more different! I have had tearful patients come to me for treatment; frustrated that well-meaning friends or family members compare their levels of pain or function with those individuals diagnosed with the more prevalent OA. I explain that OA is not a systemic disease, and therefore many of the symptoms and manifestations are incomparable. Greater education regarding the scope of the word “arthritis” would go far in easing the frustrations of patients with RA, and benefit their family, friends, and society as well.
“I can always count on my doctor or HCP to lend an ear.” 90% of people with RA reported feeling their doctor or HCP listens to what is important to them.
It is exactly this understanding that is the underpinning of the caregiver/patient relationship. In treating possibly hundreds of patients with RA, I can explain that their varying levels of pain, remissions/exacerbations, and general feelings of malaise are not psychological manifestations. It is NOT “all in their heads” as some suggest to them. This support, in combination with the PT treatment provided, is invaluable to my patients.
“Don’t tell me to slow down.” 84% of people with RA feel more independent after being treated.
That said, my patients come to me for results! They want to live full lives, for the most part, are compliant with the treatment programs prescribed. Though they may need to motor-down during flare-ups, those living with RA are looking for blueprints to become more active. In addition to offering modalities for pain (heat/ice, hydrotherapy, electrical stimulation), therapeutic exercise (range of motion, strengthening), manual therapy (massage, soft tissue mobilization), and functional training (activities of daily living adaptations), I have found joint protection strategies are effective and vital to ensure these patients stay active. Allow me to share these interventions with you:
My Personal Top PT Tips for Joint Protection
• Improved posture puts far less strain on the many small joints in your neck; avoid a forward-head stance by keeping your ear in alignment with your shoulder. Likewise, while sitting and working, slant work materials/computers towards you on an easel or binder- no slumping allowed!
• Avoid standing in a stationary position to ease loading on your hips, knees, and ankles. Keep feet shoulder’s width apart as you stand, and gently shift weight from side-to-side, back-to-front. Keep it subtle and no one will be the wiser. (Except your joints!)
• Use the largest joints/muscles for each task. Push items with your body weight, rather than lifting. If you must lift, use proper body mechanics; let your thighs and not your back do the work. Keep items close to your body when carried. Use your fingers as little as possible and substitute a flat palm carry when doable.
I applaud the Honestly RA campaign for the insights it provides to me, a health care provider. We have always known that education and knowledge are key components to address RA, and this survey has validated that in our patients’ own words. For society at-large, information is king! For any individual living with RA, these results must be nothing less than liberating. Honestly.