It takes some time for newly diagnosed RA patients to understand their disease. RA is complicated. It is even more of a challenge to get family and friends to understand.
Most people have heard the term “arthritis.” Most think of it as an old person’s disease. They may have an elderly grandparent or other relatives with arthritis, and that is the extent of their exposure to it.
There Are 100-Plus Types of Arthritis and Rheumatic Diseases
When people learn that “arthritis” is an umbrella term for over 100 different types of arthritis and rheumatic diseases, they are surprised, if not overwhelmed. When they start to learn more, they realize that there are types of arthritis that are potentially more serious and severe than minor pain conditions for which you can simply take an aspirin, rub on Bengay, and be good to go.
Rheumatoid arthritis (RA) is among the types of arthritis that are difficult to understand and difficult to explain. It can be challenging and frustrating when the people who are closest to you don’t understand what you deal with on a daily basis and how RA impacts your life. You may live in the same house with people who don’t understand. Let’s look at the top six things about RA that are difficult for people to comprehend:
1. Rheumatoid Arthritis Is Not Osteoarthritis: 2 Different Types of Arthritis
Osteoarthritis affects over 32.5 million adults in the United States, according to the Centers for Disease Control and Prevention (CDC). It is the most common type of arthritis; it’s the type that your grandparents have, most likely. It is known as degenerative arthritis and also called wear-and-tear arthritis, aptly named because the cartilage that lines your joints wears down. The risk of developing osteoarthritis increases with age.
Rheumatoid arthritis is an autoimmune, inflammatory, systemic disease. In RA, your immune system attacks healthy cells in your body by mistake, resulting in inflammation, pain, and swelling in affected body parts. Typically, with rheumatoid arthritis, the pattern of affected joints occurs symmetrically (in the same joint on both sides of the body).
2. Rheumatoid Arthritis Is Not Solely a Joint Disease; It Is a Systemic Disease
With rheumatoid arthritis, the organs of the body, such as the heart, lungs, and eyes, may also be affected. Because “arthritis” is part of the name, it is misleading, confusing, and somewhat suggestive that RA only affects the joints. Not so.
While there is symmetrical peripheral polyarthritis with RA, the pulmonary manifestations, cardiovascular manifestations, neurological manifestations, and potential complications, such as infection and glucocorticoid-induced osteoporosis, are significant aspects of the disease which must be managed. According to an article published in the June 2020 issue of the Journal of Clinical Medicine, systemic involvement occurs is about 40 percent of RA patients.
3. Variability of Rheumatoid Arthritis Symptoms and Disease Activity Is Nearly Impossible to Explain
It is hard enough to get people to understand that RA is a chronic disease and it’s not going away. It is even more difficult to explain that RA is characterized by variable symptoms — fluctuations that can occur without notice, which may be intense and of unpredictable duration. Pain levels can spike for what seems like no reason and the fluctuation can not only occur from week to week, but also day to day, or even hour to hour. The variability and unpredictability of RA is difficult for patients to accept and understand. That is also true of family and friends. One day you can’t get out of bed and the next day you’re able to go to the gym. It almost seems like you are faking, and many RA patients have been accused of just that.
4. Diet, Exercise, and Supplements Do Not Cure Rheumatoid Arthritis
If you have RA, it is a sure bet that someone at some point will suggest that changing your diet or exercising more will cure your RA. People also like to pitch supplements as the solution. Decades ago, DMSO (dimethyl sulfoxide) was a popular folk remedy for RA. There has also been 15 minutes of fame for milk thistle, turmeric, vitamin D, and countless other supplements and products. Let’s not forget a gluten-free diet, too.
Regular exercise is definitely helpful for managing RA symptoms. And, there are foods that are considered anti-inflammatory. Helpful, maybe. But, there is no cure for RA.
Managing and treating RA usually involves using drugs, DMARDs (disease-modifying anti-rheumatic drugs), and biologic DMARDs, which slow disease progression and prevent joint deformity. Other medications may be used to help control inflammation and reduce pain. The goal of treatment is to manage the disease. There is no single treatment plan that works for everyone with RA. A period of trial-and-error is necessary to find the most effective combination of medicines, as well as self-management techniques (reducing stress, using joint protection techniques, massage, and more) for you.
5. Fatigue Is as Daunting as Rheumatoid Arthritis Pain
Most people are aware that RA is a chronic pain condition. Managing the pain and learning to live with pain become the focus after being diagnosed with RA. Most people don’t realize that, with RA, fatigue is as big of a problem as pain. Research published in the journal RMD Open suggests that fatigue in RA is a persistent problem and an unmet need. Even with improved treatment strategies, fatigue persists.
6. Morning Stiffness Is a Recognized Characteristic of RA — You’re Not Being Lazy
I know a lot of people who have a hard time getting up when the alarm clock goes off. That’s people without RA as well as people with RA. For people without RA, it is mostly a consequence of not getting enough sleep. For people with RA, morning stiffness is an actual characteristic of the disease. While the exact cause of morning stiffness in RA is not known, it does seem to be associated with inflammation.
Morning stiffness leaves you feeling like you can’t get up; flattened, as if hit by a truck. The joint stiffness and body aches are intense and cruel and typically last more than an hour. So, if you have RA, you are not just trying to grab a few extra winks, nor being lazy — your body isn’t cooperating.
7. Work Disability Is Common With Rheumatoid Arthritis
According to the CDC, RA can make work difficult. In fact, adults with RA are less likely to be employed than those who do not have RA, research shows. As the disease progresses and worsens, many people with RA find they cannot work at the level they once did. Work loss among people with RA is highest among people whose jobs are physically demanding, and less so among those with jobs that are less physical or where they have influence over the job pace and job activities.
While some studies suggest work disability rates with RA are somewhat variable, prospective studies show that the rate is about 30 to 40 percent five years after diagnosis, according to research published in the journal Annals of the Rheumatic Diseases.
It has been theorized that better treatment options, such as biological drugs, would have a positive impact on RA and lower work disability rates. While there may be an improvement in individual cases, research suggests that overall work disability remains a problem with RA.
It can be difficult to determine when it is the right time to stop working, but you must consider your physical limitations and the demands of your current job, as well as the demands of any type of work. Social Security Disability defines disability for their purposes of determination as the inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment that has lasted or is expected to last for 12 months or result in death.
8. Are Rheumatoid Arthritis Patients Immunocompromised? What Does That Even Mean?
“Immunocompromised” is a scary word and complicated word. It is also very misunderstood. I have heard people who have rheumatoid arthritis or other autoimmune diseases say they have “no immune system.” That is an inaccurate statement. In fact, immunocompromised is defined as having a “weakened immune system”. People who are immunocompromised have a reduced ability to fight off infections or certain other conditions. It is also said that immunocompromised patients have an increased risk of developing an infection.
With RA, the disease state itself is associated with being immunocompromised. With autoimmunity, the body attacks healthy immune cells, thus lowering immunity. Also, the treatments for RA are designed to dampen down the overactive immune state of RA. But, remember, lower immunity is no immunity. Think of it as having lower defenses against infections.
You may also hear about the consequence of being immunocompromised as it relates to vaccine efficacy. Potentially, immunocompromised patients may not achieve the full effect of vaccinations.
Regarding the terminology, the words “immunocompromised” and “immunosuppressed” are often used interchangeably.