About Lupus

Easing Joint and Muscle Pain

For many people, joint pain and stiffness are the first symptoms of lupus, or a sign that a flare is coming on. Joints in the hands, wrists and feet get stiff and painful to move, sometimes so much so that it is hard to get up from a chair or button a shirt. The shoulders, knees and ankles also get stiff sometimes. A doctor called a "rheumatologist" specializes in treating these achy joints ("arthralgias") as well as swollen and painful joints.

Why do people with lupus get pain and stiffness in their joints?
When lupus is active, there is inflammation (increased heat, swelling, and pain) throughout the body. As part of this inflammation, a thin lining in certain spaces around the joints grows and thickens. This change in size causes pain and swelling in the joints as well as tendons and special fluid-filled sacs that normally lessen rubbing between body parts. Inflammation also can lead to the release of body chemicals that break down bone and destroy a type of very hard connective tissue called cartilage.

Is this pain and stiffness the same as arthritis?
No, since the bones and joints do not (usually) get damaged permanently, as they do with arthritis. But the pain and stiffness of lupus can still be very difficult to deal with, and some of the ways of handling arthritis work well for lupus.

Are muscles affected?
Two out of three people with lupus at some point complain of muscle aches. Often these aches are between the elbow and neck, or between the knee and the hip. While the aching can be intense, the muscle does not actually weaken, which is good. The muscle can also get inflamed (reddened, warm, swollen), although this is less common. A separate illness called fibromyalgia, which involves extreme muscle pain and tenderness at particular body points, sometimes happens at the same time as lupus.

How should pain and stiffness be treated?
Some over-the-counter anti-inflammatory drugs, such as ibuprofen, aspirin, and naproxen, may lessen pain and inflammation. Some people get relief by putting heating pads on painful areas or taking warm showers and baths to lessen stiffness. Others feel better with cold packs. Find what works for you, but also always check with your doctor.

What is the best way to handle a joint that is very stiff, tender, and inflamed?
Try resting and lifting up the joint (pillows and blankets are good props) as much as possible. Avoid putting weight on it. Warm showers or baths can lessen stiffness. Stay away from activity that increases pain, tenderness, swelling or makes your muscles "burn." A "physical therapist" (or trained friend) can gently move the inflamed joint to prevent extreme stiffness, but check with your doctor first. An "occupational therapist" can help with ways for coping and getting your strength back if tasks such as cleaning, bathing, and cooking are hard to do.

Is it important to keep joints and muscles healthy?
Resting and protecting joints are very important, but exercise keeps the muscles, bones, and tendons that make up the joint as healthy and strong as possible. So avoid weight-bearing exercises if you have joint pain, but also look for ways to stay active, such as gentle yoga or walking 30 minutes daily. Keeping active helps to control weight, boost energy, and put you in a better mood. Do what you can during a flare, and try to exercise more as you start to feel better.

Are there other kinds of joint problems in lupus?
Although much less common, other joint problems are possible, such as damage to the hip joint (possibly leading to severe arthritis), tendonitis, carpal tunnel syndrome, and the development of small lumps in the joints of the hands. Ask your doctor for more information about how to handle these problems.

Reviewer: Mark Jarrett, M.D.

Easing Aching Joint and Muscle Pain in Lupus

By Mark Jarrett, MD
Staten Island University Hospital, Staten Island, NY

Is it common to develop joint pain and stiffness with lupus?
Up to 90 percent of people with lupus struggle with joint pain (arthralgia) and stiffness. For many, the discomfort is among the first symptoms of the disease. It often shows up in the small joints of the hands, wrists and feet, making it uncomfortable to walk and interfering with simple tasks such as buttoning a shirt or chopping vegetables. As the disease evolves, some people experience pain in other joints such as the shoulders, knees and ankles. Arthralgia is sometimes referred to as lupus arthritis, although the bones and joints usually don't suffer permanent damage.

Why are joints affected by lupus?
As part of the inflammation involved in active lupus, the thin membrane of connective tissue called the synovium that lines certain joint spaces (for example, in the knees, hands, hips) grows and thickens. This change in size and associated inflammation causes pain and swelling not only in the joints but in the tendons and fluid-filled sacs called bursae that normally serve to reduce friction between body tissues. Connective tissue inflammation also can prompt the release of chemicals capable of eroding bone or destroying cartilage.

Is muscle pain common with lupus as well?
Two-thirds of people with lupus complain of muscle aches (myalgia), typically between the elbow and neck or the knee and hip. The muscle doesn't actually weaken, although in about 15 percent of people with lupus it become inflamed at some point, a condition called myositis.

What can be done to ease the pain and stiffness of lupus?
A doctor first needs to determine what is causing your discomfort, and rule out other possible causes. You may get some relief by applying heating pads to painful areas or taking warm showers and baths to lessen stiffness. Alternatively, try cold packs — this helps some people. If the joint is severely inflamed, handle it very carefully. Rest and elevate it (pillows and blankets are good props) as much as possible, and avoid putting weight on it. Also stay away from activity that increases pain, tenderness, swelling or the sensation of increased heat. A physical therapist or friend (he or she should get trained) can gently move the inflamed joint to prevent extreme stiffness. Finally, anti-inflammatory medications often help with pain and to reduce inflammation; ask your doctor for guidance.

Will the discomfort go away?
Usually, yes. Once you feel better and your physical condition has improved, start on an exercise program. This is ultimately worth it because while resting and protecting joints are extremely important, exercise is vital for keeping muscles, bones, joints, and tendons strong and healthy.

What are the primary areas of research in lupus—and is the cardiovascular system one of them?
With no major new treatment approved in more than 40 years, lupus needs a breakthrough. Researchers have made significant headway recently, however, reporting exciting findings in terms of how the disease works and what can be done to treat it. Among the discoveries are a deeper understanding of the genetic links to lupus and enhanced recognition of how lupus attacks the brain, kidneys, and skin. And several promising advances have also been made in figuring out lupus heart disease. Researchers have learned a lot more about immune system abnormalities that target this organ and have greater insight into biomarkers (predictors) of atherosclerosis. There are also improved techniques for early detection of heart disease, and more options for drug treatment.

Are companies developing new drugs to treat lupus?
Yes, finally. Several pharmaceutical companies are developing new medications. An online search will generate information on these companies and their drugs. You also can find websites that report new drug findings, such as www.LupusNY.org and www.LupusResearchInstitute.org.

How can I help advance research and drug development?
As a person with lupus, you can directly help in advancing lupus science—and simultaneously help yourself—by participating in a clinical trial. A clinical trial is a research project that evaluates the safety and effectiveness of medical treatments, drugs, or devices in human beings. The Food and Drug Administration (FDA) requires that such trials be performed before a product can be prescribed to patients. For information on clinical trials in lupus, try visiting the following websites: www.clinicaltrials.gov; www.LupusResearchInstitute.com; www.centerwatch.com.

What is the outlook for people with lupus?
There isn't a cure yet, but every year now researchers are gaining promising new insights into this disease and uncovering promising treatments. Just twenty years ago, only 40 percent of people with lupus were expected to live more than three years following a lupus diagnosis. Now, with earlier diagnosis, refinements in treatments, and careful monitoring, most people with lupus can look forward to a normal lifespan. More than 80 percent of people diagnosed with lupus in 2005 will live for 10 years or more.