Diagnosing lupus can be difficult
The human body is an amazing thing. The ability to stand and move, to walk, with little thought, without injury; these are complex processes. How about the body’s efficiency at fighting off the billions of bacteria we come into contact with, all the dangerous possible infections, necessary to keep the body healthy?
It’s a wonderful system, although extremely complex. As any efficiency engineer can tell you, the more complex a system becomes, the more opportunity for things to malfunction. That is why we have doctors!
What happens when this complex system malfunctions, and, specifically, what are some of the more common ways that problems can develop? Such a discussion could last for many more pages than this publication, but let’s confine it to the topic of autoimmune conditions.
These are problems in which the immune system attacks the body because it confuses it for something foreign. There are many autoimmune diseases, such as rheumatoid arthritis, but this dialogue will be confined to a disease called lupus, more specifically systemic lupus erythematosus.
The term lupus has been used to identify a number of different immune diseases, many of which have similar clinical presentations and lab findings, but SLE is the most common type of lupus. People are generally referring to SLE when they say lupus.
So what is systemic lupus erythematosus? As the name suggests, this is a systemic condition, which means that it affects the whole body. The last term that makes up the name refers to the redness that is part of the rash that commonly develops.
According to the Lupus Foundation of America, at least 1.5 million Americans are living with diagnosed lupus, although they believe that the number of people who actually have the condition is much higher, since many cases go undiagnosed.
Therein lies the intriguing part of this disease, which is the variability in presenting symptoms, as well as how many different systems in the body are affected. It’s quite a “laundry list” of organs and structures that can become the source of pain or difficulties.
In order to make this more real to you, the reader, let’s look at a real-life patient who was (eventually) diagnosed with systemic lupus erythematosus. In this example, a young woman, pregnant with her second child, developed fatigue, anxiety and heart palpitations. A diagnosis of stress was made. Thankfully, the symptoms faded. Two years later, she began experiencing abdominal pain, which was said to be due to gall bladder problems. She was prescribed a low-fat diet, and instructed to exercise more. Several years later she became pregnant again, and an entirely new constellation of problems developed, including premature contractions, headaches, and swelling of her legs. Bed rest was recommended, and she went on to have a normal delivery of a healthy baby.
Our patient began experiencing new and puzzling symptoms shortly thereafter. Her ankles and knees began to swell. She had joint pain in her ankles, knees, elbows, wrists, and fingers, causing her to have difficulty climbing stairs. Rest and over-the-counter pain medication relieved her symptoms, but rest was difficult to come by, due to the responsibilities of caring for a family and working full-time.
Winter came, and she noted a new and painful intolerance to the low temperatures, whereby her hands and feet became stiff, painful and discolored when exposed to cold. It is during this period that she was referred to a rheumatologist who ran a variety of lab tests.
The specialist suspected lupus, but was not certain, adding to the frustration of our subject who felt no one was listening to her complaints. Her friends and family were mystified, especially since she looked as if nothing was wrong with her. The following summer, a strange, red, raised rash developed after spending some time outdoors.
Although it cannot be said that this story had a happy ending, she did eventually see another rheumatologist who made a definitive diagnosis of SLE. Obviously, this provided the patient with a certain amount of relief to at least know what her condition was, and that it was not all in her mind. Oral steroid medication, followed by an anti-inflammatory medication, were prescribed and provided her with noticeable relief.
An important facet of a conversation on SLE is that it is a life-long chronic disease, and there is no cure. Someone with SLE will have phases of worsening symptoms, alternating with periods of mild ones. The exact cause of SLE isn’t known, but several factors have been associated with the disease. On occasion, there appears to be an environmental trigger which can initiate an episode of worsening symptoms that can include sun exposure, some viral infections, physical or emotional stress, as well as increased levels of particular hormones.
Because SLE affects women more than men, and women may experience more severe symptoms with their menstrual periods, many medical professionals believe that the female hormone estrogen may play a role in causing it. However, more research is still needed to prove this theory.
Lupus symptoms are ones which can be associated with many other diseases, which makes diagnosis tricky. Symptoms can vary and can change over time. Some of the symptoms may include those mentioned above: severe fatigue, joint pain, joint swelling, and headaches. The appearance of a rash on the cheeks and nose, called a “butterfly rash”, does not have to be evident to make the diagnosis, but is commonly noted.
Other findings include hair loss, anemia, and blood-clotting problems. A sensitivity to cold, in which the fingers turn white or blue when cold, which is generally termed Raynaud’s phenomenon, can also develop. Other symptoms depend on the part of the body the disease is attacking, such as the digestive tract, the heart, or the skin.
Most people with lupus are able to live a normal life with appropriate treatment, but, as mentioned, no cure exists. The goal is to ease symptoms. Treatment can vary depending on how severe your symptoms are and which parts of your body SLE affects.
Some options include anti-inflammatory medications for joint pain and stiffness, as well as steroids to minimize the immune response. Also available are disease modifying drugs or targeted immune system agents. These can have some nasty side effects, and are reserved for more severe cases.
No diet-based treatment of SLE has been proven effective. Patients with lupus should be reminded that activity may need to be modified as tolerated. Specifically, stress and physical illness may precipitate SLE flares. Additionally, persons with this disease should wear sunscreen and protective clothing or avoid sun exposure to limit photosensitive rash or disease flares.
If you have some of the symptoms discussed above, but the cause has not yet been determined, talk with your doctor about SLE as a possible cause. Sometimes a specialist may need to be consulted. There is much that modern medicine does not yet know: one example is how to cure this condition.
Even arriving at a diagnosis can be difficult. But there is a considerable amount of satisfaction in knowing exactly what is causing your symptoms. This is a real, verifiable disease, and with appropriate treatment, a full and enjoyable life is possible.
Editor’s note: Dr. Conway McLean is a podiatric physician now practicing foot and ankle medicine in the Upper Peninsula, having assumed the practice of Dr. Ken Tabor. McLean has lectured internationally on surgery and wound care, and is board certified in both, with a sub-specialty in foot orthotic therapy. Dr. McLean welcomes questions, comments and suggestions at firstname.lastname@example.org.