The Empowered Patient's Guide to Rheumatoid Arthritis

All you need to know about the symptoms of rheumatoid arthritis and how to live with this inflammatory and often painful joint disease.

Everybody Hurts. A classic REM song, and a universal truth. Physically, knees and hips can ache after a tough workout, wrists and hands can tweak from repetitive movements like typing, lower backs can groan from sitting too long. And as we get older, creaky joints become an expected part of daily life (yay, aging). But if joint pain is related to rheumatoid arthritis – caused by tissue damage due to errant inflammation – things get far more complicated. Early diagnosis and treatment are crucial to easing the chronic pain that often accompanies this disease, and doctors (as well as your fellow pain warriors) are here to help. As the song says: You’re not alone.

 

SO, WHAT IS RHEUMATOID ARTHRITIS EXACTLY?

Rheumatoid arthritis (RA) is a specific type of arthritis that typically affects joints – hands, wrists, knees – but can also damage a wide variety of internal systems, such as your circulatory system. Rheumatoid arthritis initially affects the lining of joints and connective tissue (called the synovial membrane), causing swelling that, in the long-term, can result in bone erosion and joint damage.1

RA is an autoimmune disease, meaning that the body’s natural immune system works against itself. Immunity is the body’s natural way of defending you from a foreign invader, like a virus, a bacteria, or an injury. When the immune system is persistently activated, it triggers chronic inflammation. For example, when you fall and hit your knee, it will swell (it’s inflamed). This swelling tells the knee that tissue has been damaged and repair is needed. Such chronic inflammation, if left unchecked, can lead to persistent and progressive joint damage as with RA.

Rheumatoid arthritis is not uncommon. According to the American College of Rheumatology (ACR), more than 1.3 million Americans have the condition and the majority of them are women (75%). In fact, 1% to 3% of women may develop rheumatoid arthritis in their lifetime. Typically, the disease shows up between ages 30 and 50 but it can develop at any age.2

Once developed, rheumatoid arthritis typically becomes a chronic disease. Getting ahead of the condition early and treating it as soon as possible (such as after the first sign of swelling) is key reducing lifelong pain. People who receive early treatment intervention have a better chance of improving their lives sooner, and are more likely to lead an active life, says the ACR. These individuals are also less likely to require joint replacement surgery due to excessive joint damage.

Rheumatoid Arthritis Symptoms

According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases,3 rheumatoid arthritis symptoms can range from mild to severe.

Most common symptoms affect the joints:

  • tender, warm, swollen joints
  • swollen joints on both sides of the body, such as in both your right and left wrist
  • swollen joints often in the wrist and finger joints, especially the middle knuckles
  • swollen joints sometimes in other joints, including the shoulders, elbows, hips, knees, ankles, and feet
  • feeling tired and having low energy
  • pain and stiffness lasting for more than 30 minutes in the morning or after a long rest
  • symptoms that last for many months or years

Less common symptoms can affect other parts of your body:

  • eyes ­– dryness, pain, redness, sensitivity to light and impaired vision
  • mouth – dryness and gum irritation or infection
  • skin – rheumatoid nodules (small lumps under the skin over bony areas)
  • lungs – inflammation and scarring that can lead to shortness of breath
  • blood – up to 60% of people with RA develop anemia, a lower than normal number of red blood cells4
  • heart and blood vessels – inflammation of blood vessels
  • lymph gland swelling
  • nerve inflammation, such as carpal tunnel syndrome, neuropathy

BUT WAIT, RA GETS MORE COMPLICATED: SYMPTOMS AND CAUSES

Rheumatoid arthritis can be complex. The specific reasons why some people develop it and others don’t remain unknown. However, the medical community does know what may increase the risk and likelihood of developing the disease, such as having more levels of what’s called “rheumatoid factor” in your blood (more on this below).

In addition, while RA is considered a chronic condition – meaning it has no cure and will never fully “go away” – how severe the symptoms get differ from person to person, and flares may wax and wane. For example, when the disease is more active (called disease flares), symptoms become worse. When symptoms disappear, either on their own or with treatment, patients go into remission.3

Causes of Rheumatoid Arthritis

Since RA is an autoimmune disorder that attacks one’s own body tissues, researchers are focusing on why these mistakes occur.5

One factor that may play a role in the development of RA is that many people with the condition have higher levels of an antibody in their immune system: enter “rheumatoid factor” or RF for short. Low levels of this antibody can be present in healthy individuals or in people with other inflammatory conditions, but individuals with RA have higher levels of RF, as well as another antibody, the anti-CCP antibody. Both antibodies are signs of hyperactive immunity; doctors use them to help confirm the diagnosis of RA.

Despite the unknowns about the causes of RA, there are some risk factors for developing this condition:6-10

  • Certain Genes: Rheumatoid arthritis could be hereditary. According to the Arthritis Foundation, researchers have shown that people with a specific genetic marker called the “HLA shared epitope,” which controls immune response, are five times more likely to develop RA than those without the marker.
  • Gender: As noted, RA affects women way more than men (75% compared to 25%) although we don’t know why. Since female patients are more likely to get RA, some researchers believe that female hormones play a part in the development of the disease. Others speculate that the disease affects both sexes equally but that women tend to experience more symptoms.
  • Infections, bacteria, and/or viruses: Getting sick can act as a “trigger” to activating the genes noted above, according to the American Academy of Orthopedic Surgeons. This causes the immune system to act inappropriately and produce substances that attack the joint instead of protecting it.
  • Obesity, stress, and environment: These factors, as well as the body’s response to stressful events, such as physical or emotional trauma, could also play a part in the development of rheumatoid arthritis. Research has also indicated that environmental factors such as exposure to cigarette smoke, air pollution, insecticides and occupational exposures to mineral oil and silica may play a role in risk as well.

 

WHAT ELSE TO EXPECT WHEN LIVING WITH RHEUMATOID ARTHRITIS

Living with rheumatoid arthritis may impact your life in different ways. If you’re stiff and in pain, you may not want to go to the grocery store or pick up a child or grandchild for example. If your hands and wrists hurt, you may not want to garden or cook.

Along with joint stiffness and pain, some people feel as though their quality of life has diminished. They may be exhausted, struggle with sleep disturbances, sexual dysfunction, or depression (more on mental health below). Others may have to manage overlapping conditions like fibromyalgia.

 

HOW TO TREAT RA

Like every chronic disorder known to humankind, managing rheumatoid arthritis effectively begins with early and appropriate treatment. We can’t underscore this enough. According to the ACR, people who receive early treatment intervention have a better chance of improving their lives sooner, are more likely to lead an active life, and are less likely to need joint replacement therapy caused by excessive joint damage.11

Above all else, it is important to seek out a rheumatologist – a doctor who specializes in arthritis and autoimmune diseases – who can help develop a treatment plan for your individual needs and therapy goals.

There are a number of treatments that your doctor may recommend based on the severity of your symptoms and how long you’ve had RA. No matter the approach, the goals should be to stop the inflammation causing the disease, relieve your symptoms, prevent further joint and organ damage, and improve your overall health, per the Arthritis Foundation.

To accomplish these goals, your doctor may start with a standard treatment approach which involves using aggressive therapies to rapidly reduce inflammation and get the disease under control (called treat-to-target).12-14

But don’t get scared off by the word “aggressive” – these therapies generally include a range of medications, such as:

  • corticosteroids (such as prednisone)
  • a class of drugs called disease-modifying anti-rheumatic drugs (DMARDS, such as methotrexate, hydroxychloroquine, sulfasalazine, and leflunomide)
  • biologic DMARD agents (such as adalimumab, certolizumab, etanercept, golimumab, tocilizumab); and
  • a relatively new class of drugs called Janus kinases inhibitors (JAK inhibitors) (such as tofacitinib, baricitinib, upadacitinib).

Your doctor may prescribe one or a combination of these medications at the beginning of your treatment. When deciding which medications to use, he or she will likely consider how long you’ve had symptoms, how severe your symptoms are, any potential side effects, and any preferences you may have, such as cost. Blood tests and joint X-rays can help determine disease severity and therapy.

Once the disease is under control, you may be able to reduce your medication dose. Recent data suggests that individuals in RA remission or with low disease activity may even be able to go off their medications. However, this should be a decision you make with your doctor and he/she will likely still want to monitor you for symptom flares.15

Along with keeping your symptoms low or at bay (in remission), an important part of any care plan will likely include complementary or alternative interventions to keep your symptoms under control. For instance, your doctor may encourage physical therapy, exercise, acupuncture, and/or mind-body techniques.

In some patients, prolonged inflammation from uncontrolled disease may cause bone deformities that may require surgical intervention to repair damaged joints. Your rheumatologist may confer with you and an orthopedic specialist about the different types of surgery that may best work to correct your particular problem. 

WHY YOUR MENTAL HEALTH MATTERS WITH RA

When  pain reduces your ability to get around or do the things you love, it’s normal for emotions to get the best of you. Depression is not uncommon in people with rheumatoid arthritis. Studies show a significantly increased risk of depression in people with RA, particularly in women and people older than 30 years of age.16,17

Research also shows that people with RA and depression may experience a lower quality of life and higher disease activity than those without depression. Moreover, some people with chronic conditions, including RA, may be an increased risk for having suicidal thoughts.18

The pain management community is just beginning to focus on the impact of chronic life on mental health. So it’s important to be proactive and tell your doctor if and when you’re feeling depressed or anxious. Treatments – from medication to talk therapy – can help.

 

SELF-CARE MATTERS TOO; HERE’S HOW TO TAKE CHARGE OF YOUR RA

Self-care may have been co-opted by bougie candle companies, but true self-care is one of the most important things you can do to stay healthy overall and to minimize the painful symptoms of rheumatoid arthritis.

The Arthritis Foundation lays out a number of self-management tips for both your physical and emotional needs.19 Along with the complementary interventions described above, other habits include:

  • Staying active. Exercise is important to strengthen muscles to support your painful joints and keep them mobile. Start with low impact exercises like swimming and gradually work into more activity.
  • Managing fatigue. When your sleep is interrupted from pain or stiff joints, fatigue may set in during the day.  Exercise, drinking enough water, eating well, reducing stress, addressing your mental health, and resting when needed are all good strategies for reducing fatigue. If these aren’t enough, your doctor may suggest additional medications to manage anemia, help with sleep, or increase your energy levels (eg, antidepressants). When your symptoms are flaring, you’ll need to pace yourself and take breaks throughout the day.
  • Try an anti-inflammatory diet. Some suggest trying the Mediterranean diet which includes fish, nuts/seeds, fruits/vegetables, olive oil, and beans, although the evidence for benefitting RA is weak. See if it works for you. More on anti-inflammatory foods for pain.

 

Becky’s RA Journey: Becky Tomlinson learned how to manage her RA pain with an integrative pain management program

 

WHAT CAN I DO RIGHT NOW?

  1. Tame an RA Flare. Try hot and cold packs to decrease pain sensation; ask for help with daily tasks that are too difficult to do during a flare; balance rest and activity; try deep breathing relaxation exercises.20
  2. Check in on your mental health. Seek out resources to help with emotional difficulties, such as the National Alliance on Mental Illness (NAMI), Anxiety and Depression Association of America, or Depression and Bipolar Support Alliance.
  3. Find an experienced rheumatologist. The ACR allows you to search by zip code. You can also contact the ACR – the US association of rheumatologists.
  4. Prep for your next doc visit.  Write down questions to ask your doctor; use a diary to track your symptoms; document what activities make you feel worse or better, and which activities cause pain.
  5. Be an Advocate. ­Help others with RA by participating in a number of activities, including “Tell Your Story”, volunteering, or joining advocacy ventures.

 

CRUSH THE STIGMA

Many people lump all types of arthritis together. When they hear “rheumatoid arthritis,” they don’t know if or how it is different from osteoarthritis (OA) or psoriatic arthritis (PsA). As someone living with rheumatoid arthritis, you are in a good position to educate people on the differences. Although all three of these conditions can have overlapping, there are important differences.

Like RA, psoriatic arthritis is an autoimmune disease that causes damages to joints – but PsA also damages the skin by causing your body to make too many skin cells. This leads to psoriasis. Also, people with PsA have joint swelling, stiffness, and pain that typically starts in different parts of the body than RA. Instead of the fingers/toes in RA that affect both sides of the body, psoriatic arthritis can also affect the back and pelvis joints and often affects only one side of the body.21

Osteoarthritis is not an autoimmune disease but a condition in which the joint cartilage breaks down over time causing swelling, stiffness, and pain. Joint pain and stillness typically fade within 30 minutes of walking, whereas in RA these symptoms can last longer. People with osteoarthritis may also have joint pain in individual joints, whereas those with RA are affected on both sides of the body.22

 

FAQs

What are the first signs of rheumatoid arthritis?
The early signs of rheumatoid arthritis often include the gradual onset of tenderness, swelling, and pain around the joints. Usually a number of small joints of the hands and feet are involved. Joints can feel tender, warm and swollen, with stiffness typically worse after inactivity or in the morning. Fatigue, loss of appetite and fever may also be present. Symptoms that last for six weeks or longer indicate a likely diagnosis of rheumatoid arthritis.

Where in the body does RA usually start?
Rheumatoid arthritis usually first affects the smaller joints of the hands and toes, and as it progresses affects the wrist, knees, ankles, elbows, shoulders, and hips. Symptoms typically occur on both sides of the body.

What does rheumatoid arthritis pain feel like?
Pain associated with RA can feel like a sprain or broken bone – when these areas of the body are touched or pressed, you may feel pain. You may also feel stiff in the morning or when getting up from the couch, or feel as though you need an energy boost. Some people with RA have difficulty breathing due to inflammation or scarring in the lungs, or experience itching on the skin, due to the disease itself or the medications you may be taking.

Updated on: 08/12/20
Continue Reading:
Foods for Pain Relief: How An Anti-Inflammatory Diet Can Help Manage Chronic Pain Conditions
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