Social media drives me nuts. But I also find it amusing. And sometimes I’m even grateful for it because of the connections it allows me to maintain. Like the dear friend with whom I’d fallen out of touch, only to recently discover was diagnosed with lupus disease two years ago. Apparently, lupus disease is also similar to chronic fatigue syndrome (CFS) and fibromyalgia, just two of the conditions with overlapping symptoms that can muddy the waters when it comes to a diagnosis. With that in mind, it took a while for my friend to get her lupus diagnosis. In all my research and experiences with both CFS and fibromyalgia, one thing I have learned is that these and similar conditions are often very difficult to diagnose. In fact, many patients have multiple conditions at the same time. And, of course, lupus frequently shows up in the research of these conditions. But just what is lupus and how is it treated?
What’s in a Name?
It’s hard for me to hear the name “lupus” without linking it to the fictional “Professor Remus Lupin” from the Harry Potter series. In the story, Professor Lupin was a werewolf. So, it should not come as a surprise that the word lupus is Latin for “wolf.” The name is no mere coincidence, although it lupus as a disease has nothing to do with any disease or contagion from a canine. It is actually called “lupus” because of a 13th century physician “who used it to describe erosive facial lesions that were reminiscent of a wolf’s bite.” However, the reality is that lupus can damage any part of the body, including the skin, joints, and/or organs.
Sadly, lupus is an autoimmune disease. The Lupus Foundation of America explains that with lupus, the immune system cannot tell the difference between “foreign invaders” like the flu, germs, and bacteria from healthy tissues. In other words, the body begins to attack and destroy itself the way it would foreign invaders. Even though the physician didn’t intend it, associating this condition with a wolf that instinctively attacks and destroys was certainly appropriate.
Lupus Disease Symptoms
Fibromyalgia is sometimes referred to as an autoimmune disease as well. However, there is much debate over that. Nevertheless, it is easy to see why fibromyalgia and lupus disease, not to mention chronic fatigue syndrome, can be mistaken for each other and often overlap. Fibro patients will definitely recognize a lot of these common lupus symptoms:
- Extreme fatigue (tiredness)
- Painful or swollen joints
- Anemia (low numbers of red blood cells or hemoglobin, or low total blood volume)
- Swelling (edema) in feet, legs, hands, and/or around eyes
- Pain in chest on deep breathing (pleurisy)
- Butterfly-shaped rash across cheeks and nose
- Sun- or light-sensitivity (photosensitivity)
- Hair loss
- Abnormal blood clotting
- Fingers turning white and/or blue when cold (Raynaud’s phenomenon)
- Mouth or nose ulcers
The similarities between lupus and other conditions are frightening and frustrating. Indeed, so much so, that the Lupus Foundation adds: “Many of these symptoms occur in other illnesses. In fact, lupus is sometimes called “the great imitator” because its symptoms are often like the symptoms of rheumatoid arthritis, blood disorders, fibromyalgia, diabetes, thyroid problems, Lyme disease, and a number of heart, lung, muscle, and bone diseases.” No wonder it took so long for my friend to get a diagnosis. Not to mention a doctor who would take her symptoms seriously.
Treatments for Lupus
Like most of the conditions and diseases above, lupus has no cure. That means that healthcare practitioners will often focus on managing the symptoms to improve your quality of life. The Mayo Clinic recommends starting with lifestyle modifications, including sun protection and diet changes. The Lupus Foundation of America has an excellent resource regarding common diet questions for lupus patients. Some of these include avoiding alfalfa and certain ‘nightshade vegetables,’ such as potatoes, tomatoes, eggplants and peppers. The Mayo Clinic adds that some medications can be helpful. Especially immunosuppressive drugs that reduce immune response and steroids which can reduce inflammation and repair tissues.
It is important to note that you, the patient actually living with lupus and any related conditions, play an important role in helping your physician manage this disease. And if you haven’t been diagnosed yet, but suspect you may have lupus, be ready ahead of time for your visit. Have your medical history and medications list ready, be prepared to answer lots of questions regarding your symptoms, and arrive with a list of questions to ask they physician as well.
Are you suffering from lupus disease and/or multiple related conditions? Tell us what has worked for you.