I was recently reminded that newly diagnosed arthritis patients don't know what to expect. I received an email that asked: "I was just diagnosed with arthritis. How long before I need to quit my job and when will I need home care?" The email was just that succinct. Essentially, the person wanted to know how long it would be before arthritis messed up his life.
Admittedly, it had been a long time since I was diagnosed (more than three decades) and I've forgotten that feeling of uncertainty that gets handed to you along with the diagnosis. I gave it some thought and have compiled a list of things I wish I had known that first week or month after being diagnosed. At least, it would have helped me know what to expect.
Referral to a rheumatologist. If you were not diagnosed by a rheumatologist (a specialist in arthritis and rheumatic diseases), your primary or family doctor may refer you for more testing or to begin a treatment regimen. Depending on your location, you may have to travel a distance to see a rheumatologist or may have to wait a month or more for your initial appointment.
Trial and error with treatment plan. After your doctor or rheumatologist recommends a treatment plan, be aware that it may take trials of various medications over time before you find the most effective treatment for you. Response to treatment varies. Not every arthritis patient responds the same way to every drug. You may develop side effects to a drug or treatment that make it necessary to switch. You're trying to find the safest, most effective treatment for you.
Medications take time to work. Even when a particular medication is going to work out well for you, it can take time before you fully realize the benefit. For example, some of the DMARDs (disease-modifying anti-rheumatic drugs) are slow acting and can take months before you begin to feel better or see improvement in some blood tests that monitor inflammation.
People won't always understand. Expect that many people close to you, including family, friends, and co-workers, will not understand many aspects of living with arthritis. They may not understand invisible disease, the need to be flexible with social engagements, that you need more rest, or why you are sometimes irritable or frustrated. If they are willing, they can boost their understanding over time.
The degree of arthritis is not the same for everyone. Arthritis symptoms can be mild, moderate, or severe. You may know people with the disease but your situation will not mirror theirs exactly. The severity of joint damage and the rate of disease progression determine the effect on your ability to perform work, leisure and social activities.
Expect some level of arthritis-attributable activity limitation. According to the Centers for Disease Control and Prevention (CDC), about 21.1 million of the 50 million adults with doctor-diagnosed arthritis, or 42.4%, report limitations in their usual activities due to athritis.
You may need to make changes at your job so you can continue working (e.g., change schedule). About 8.3 million (31%) of working age adults with doctor-diagnosed arthritis report being limited in their ability to work due to arthritis. Worst case scenario, you may have to change jobs or eventually need to quit working.
Functional limitations related to usual daily activities are common among adults with arthritis. About 40% of adults with arthritis report that at least one of 9 daily activities are “very difficult” or they “cannot do.” The activities included: grasp small objects; reach above head; sit more than 2 hours; lift or carry 10 pounds; climb a flight of stairs; push a heavy object; walk a 1/4 mile; stand more than 2 hours; stoop, bend, or kneel.
Arthritis or rheumatism remains among the most common causes of disability. Back or spine problems and heart trouble are the second and third most common causes of disability. Among adults reporting a disability, the most commonly identified limitations were difficulty climbing a flight of stairs and walking 3 city blocks.
The Bottom Line
Arthritis has just become your lifelong companion. Your focus must be on how you can best manage the disease. You need to find a doctor who you can relate to -- one who communicates well. Work with your doctor to find the most effective treatment plan. When you notice increasing physical limitations, talk to your doctor. The goal is to stay as functional as possible for as long as possible, despite arthritis.
Arthritis. Data and Statistics. CDC. October 2010.