Lupus is an autoimmune disease; there are two types of lupus, discoid lupus erythematosus and systemic lupus erythematosus. For today I will mainly discuss systemic lupus. Just like I explained in my previous column, an autoimmune disease is a response from an overactive immune system. The immune system mistakes healthy tissue in the body as a foreign invader, such as a bacteria or virus.
Discoid Lupus Erythematosus (DLE) is a chronic disease in which there is no cure. DLE causes inflamed red scaly or crusty lesions to appear on the skin. Primarily favoring the face, ears, and scalp, but they can show up on any part of the body. These lesions can leave behind permanent scarring especially when they appear in areas where hair grows like the scalp or face.
Systemic Lupus Erythematosus (SLE) is a chronic disease that can affect many organs such as the heart, lungs, brain, skin, kidneys, liver, and your eyes. While there has been much gain in the medical communities to help combat the disease, there is however no cure. SLE is sometimes referred to as the invisible illness because it can go undetected for years before a person can be diagnosed. It doesn’t always show up in blood work, and the symptoms can be so irregular that your primary care doctor may not catch the disease.
There is no one size fits all list of symptoms for systemic lupus. Symptoms vary from patient to patient as can the severity of the disease. Systemic lupus can cause joint and muscle pain, fatigue, and swelling, as well as stiffness throughout the body. These symptoms are often debilitating leaving some unable to care for themselves without help from others.
The joint pain can be a sudden stabbing shooting pain that lasts for seconds or minutes, it can be a dull constant ache, or a constant throbbing pain. Some may experience swelling of the hands and feet that make moving your fingers and toes difficult and make it hard to grip things in your hands. Stiffness can make everyday tasks seem impossible to complete. Walking, sitting, standing, and getting up and down take such effort when you feel like the tin man needing an oil can. Your joints and muscles feel as though they are glued to one another and won’t move. Imagine moving slowly and painfully to do your normal household chores. It really takes a lot of effort just to accomplish very little.
Systemic lupus is unpredictable due to flares that come and go as the disease is more active at certain times. Weather plays a huge roll in disease flares like humidity, rainy days, dampness in the air, and cold can all cause a flare. Because lupus is so unpredictable it can affect day to day life in very drastic ways. Making it difficult to know what your tomorrow is going to look like. Plans must change constantly, and you often will need to cancel on people and activities due to a flare, or sometimes fatigue can come out of nowhere. Fatigue is a very real part of the life of a lupus sufferer. You need to pick and choose the things to accomplish and weigh out the risk of over doing it. Doing too much today could cause someone with lupus to have to rest for several days.
Systemic Lupus is difficult to deal with, but with help from a rheumatologist, and lifestyle changes, one can learn to manage the disease. Many people live out their daily lives with lupus and are very successful at it. I must admit that it came as a shock to me being diagnosed. I have since learned what my limitations are and how to better cope with lupus. I hope you find this helpful at best, I look forward to breaking more autoimmune diseases down. The more we educate others the smaller our world becomes.
Signed a fellow warrior
Amy Archibald
