Pain Management

An In-Depth Look at Lupus

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WHAT IS LUPUS?

Lupus (often labeled Discoid Lupus, Subacute Cutaneous Lupus, or Systemic Lupus Erythematosus) is an autoimmune disease that causes swelling or inflammation in various areas of the body. Our immune system produces proteins called antibodies which protect the body from viruses, bacteria, and germs. However, when someone has an “Autoimmune Disease” it means that their immune system has trouble distinguishing between invading and harmful things like bacteria and germs and the body’s healthy tissues. This can lead to the creation of autoantibodies that attack and destroy healthy tissue. These autoantibodies can cause inflammation, pain, and damage in various parts of the body. Lupus is usually chronic; meaning that the signs and symptoms tend to last longer than six weeks and often for many years. Lupus is a very unique and individualistic illness that affects everyone differently. Lupus can cause damage to your joints, skin, blood vessels, and organs. People with Lupus can have a wide range of symptoms. Some of the most commonly reported symptoms are fatigue, painful or swollen joints, fever, skin rashes, and even kidney problems. Typically, these symptoms may be spontaneous. When symptoms are present in a person with the disease, it is described as a flare. When symptoms are not present, the disease is said to be in remission. Lupus is not contagious, even through sexual contact. Lupus is not related to cancer in any way, but some treatments for Lupus may include immunosuppressant drugs that are also used in chemotherapy. Lupus is not related to HIV (Human Immunodeficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS, the immune system is underactive; in Lupus, the immune system is overactive. Lupus can range from mild to life-threatening and should be examined immediately by a doctor. Pending adequate medical care, most individuals with Lupus can manage their pain and lead normal lives.

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WHO IS AT RISK?

The Lupus Foundation of America estimates that 1.5 million Americans, and at least five million people worldwide have some form of Lupus; however, there have been no large-scale studies to show the actual number of people in the U.S. living with Lupus. More than 16,000 new cases of Lupus are reported annually across the country. It is estimated that around 9 out of 10 adults with Lupus are women aged 15-45. African-American women are 3X more likely to get Lupus than Caucasian women. It also happens to be more common in Latina, Asian, and Native American women. Men are at a higher risk before puberty and after the age of 50. Genetic factors play a large role in those with Lupus and the symptoms can be more severe for those who are not able to receive the proper care for their condition. Research has shown that people with Lupus who have a lower household income, a lower level of education, or less of a support system from friends or family often have worsened symptoms. The direct cause of Lupus is still unknown, however, researchers believe it could be anything from environment, genetics, hormones, medication complications, and/or issues with the immune system. Another factor may be biomarkers. Biomarkers are a very pertinent area of clinical Lupus research and are defined as molecules that reflect a specific biological or pathological process, a consequence of a process, or a response to a therapeutic intervention. They (biomarkers) can let the doctor know what is happening in the body or predict what might happen depending on something that can be reliably measured in tissues, cells, or fluids. Researchers have discovered several potential biomarkers. They are Anti-double-stranded DNA antibodies and complement C3a, which can be detected in a blood test. Protein in the urine is a sign of a biomarker and can determine if renal disease is present. C-reactive protein, which is made by the liver, is linked with disease activity and cardiovascular problems. C4d is a protein found in the blood that can indicate Lupus or kidney problems.

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WHAT ARE THE DIFFERENT TYPES OF LUPUS?

The broad term “Lupus” usually refers to Systemic Lupus Erythematosus (SLE), but this is only one type of Lupus. There are several types of Lupus.

  • Systemic Lupus Erythematosus (SLE) is accountable for 70% of all cases of Lupus. SLE can be mild, moderate, or severe and affects several areas of the body. Symptoms of SLE include: fatigue, sensitivity to the skin, hair loss, inflamed and swollen joints, fever, skin rashes, and even kidney problems. Your doctor will be able to diagnose you with Lupus based off of these symptoms.
  • Cutaneous Lupus Erythematosus (CLE) is a type of Lupus that primarily affects the skin but may also include hair loss and swelling of blood vessels. The skin conditions are very painful and can last for days or many years. Unlike Systemic Lupus, Cutaneous Lupus does not threaten the health of other organs and tissues in the body. It is rare, but in certain cases Cutaneous Lupus can turn into Systemic Lupus. This type of Lupus may also include lesions on the skin and can be diagnosed by a physician using a skin sample.
  • Discoid Lupus Erythematosus (DLE) typically just affects the skin with rashes or sores and can be found in the mouth, ears, and/or nose cavity.
  • Subacute Cutaneous Lupus Erythematosus (SCLE) accounts for 10% of Lupus cases and causes skin lesions on parts of the body that are exposed to the sun.
  • Drug-induced Lupus is triggered by the use of certain medicines. It usually goes away once the triggering medicines are stopped and symptoms of this type of Lupus are often mild.

 

HOW IS LUPUS DIAGNOSED?

There is no specific test to diagnose Lupus, and it may take months or years to reach an accurate diagnosis. Many symptoms of Lupus are similar to those of other diseases, and can come and go over weeks and months. In order to correctly diagnose Lupus, a doctor should be able to recognize physical or clinical evidence of the condition. Swelling of joints, protein in the urine, fluid around the lungs or heart, or a skin biopsy (test of a sample) are all evidential signs of Lupus. The doctor will also look at a person’s medical history and may ask questions about your family’s medical history as well. Most physicians use the American College of Rheumatology’s “Eleven Criteria” to rule out other conditions besides Lupus. At least four or more of the criteria must be met to make an accurate Lupus diagnosis. The criteria includes: Malar Rash (butterfly-shaped rash that typically appears on the face), Discoid Rash (red rash in the form of patches that appear on other parts of the skin), photosensitivity or an unusual reaction to sunlight, ulcers in the mouth or nose, arthritis in two or more joints (that includes tenderness, swelling or effusion), cardio-pulmonary involvement, Neurological disorders such as seizures/psychosis, renal disorder, hematologic disorders, and other immunological complications. Lupus may also cause problems in blood flow and restricted blood flow in the brain can cause dizziness, headaches, mood swings, and concentration problems.

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WHAT ARE THE SYMPTOMS OF LUPUS?

Signs and symptoms may appear suddenly or develop slowly. They may be mild or severe, as well as temporary or permanent. The signs and symptoms of Lupus that are experienced depend on which body systems are affected by the disease. Sufferers may experience arthritis-like symptoms like stiffness and joint swelling. It has been estimated that as many as 30% of Lupus patients may also have Fibromyalgia. 20% of Lupus patients experience severe, migraine-like headaches. The most common signs and symptoms include: fatigue, fever, joint pain, stiffness or swelling in joints, rashes that appear on the facial area, skin lesions when exposed to the sun, whiteness on the fingers and toes when exposed to cold environments or during stressful periods (Raynaud’s Phenomenon), chest pain, dry eyes, shortness of breath, headaches, confusion and memory loss. Lupus may cause hair to be brittle and break. Inflammation of the skin is often an early sign of Lupus that usually results in thinning of the hair and loss of eyelashes, eyebrows, facial hair, and body hair. Hair may grow back with treatment, however, permanent hair loss does occur when lesions form on the scalp. You should see your doctor at the first sign of anything that might be related to Lupus. It is important to seek treatment options as early as possible, so that you have a better chance at managing and controlling this disorder.

The digestive system extracts nutrients from the food you eat while doing away with waste products in your body. Lupus has the ability to affect the digestive system, often starting with oral problems in the mouth. People with Lupus are susceptible to lesions on the inside of the cheeks, the lower lip, and/or the roof of the mouth. Those with Lupus may also develop Sjogren’s syndrome. This is an autoimmune disease that attacks glands in the mouth and eyes, causing dryness in those areas. This is not good news, since a lack of saliva can create dental cavities and gum disease. The esophagus can become inflamed causing stomach acid to be forced back inside the esophagus (acid reflux) leading to heartburn, gas, and difficulty swallowing. Sufferers of Lupus often take nonsteroidal anti-inflammatory drugs (NSAIDs) for relief, but this can increase risk of ulcers in the stomach or where the stomach meets the bile duct, pancreatic duct, and small intestines. Inflammation can also cause fluids to build up in the lining of the abdomen. Symptoms include abdominal pain, nausea, fever, and constipation. Lupus patients have an increased risk for inflammation of the pancreas (pancreatitis). Digestive symptoms may also include constipation, diarrhea, and nausea. The kidneys may become inflamed and these issues are usually detected with a blood test. Inflammation from Lupus can cause an enlargement of the liver. People with Lupus are also at risk for developing jaundice and autoimmune hepatitis, which can lead to scarring of the liver.

LUPUS INCREASES RISK OF HEART PROBLEMS

Lupus can lower the body’s ability to make red blood cells, which can result in anemia. Lupus may also cause inflammation of the heart or blood vessels, interfering with blood flow. Unfortunately, this can lead to heart attack, infection, and tissue death. The Lupus Foundation of America states that heart disease is the leading cause of death for people with Lupus. Pericarditis is a condition in which the sac that surrounds the heart (pericardium) becomes inflamed. Chronic pericarditis can scar heart tissue and affect the heart’s ability to pump blood effectively. Inflammation of the heart muscle can cause an irregular heartbeat. Lupus may also cause a thickening of the surfaces of the heart valve (endocarditis). This increases risk for infection and formation of clots. Corticosteroids, which are often prescribed to treat Lupus, may increase the risk of hypertension, high cholesterol, and type II diabetes. They can also cause excess weight gain. Lupus sufferers may also have an increased risk of developing atherosclerosis caused by plaque, which narrows blood vessels and hinders blood flow. It may be difficult to breathe when the lungs or the linings of the chest cavity become inflamed and it can also cause shortness of breath and chest pain. Inflammation of lungs increases risk of pneumonia, adding to the long list of other damaging effects that Lupus can create.

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LUPUS CAN CAUSE EMOTIONAL EFFECTS

A lot of the symptoms that come along with Lupus can have alternative effects on the sufferer’s daily lives. Constant fatigue and pain can limit your level of activity and may cause problems in your social or occupational obligations. These issues may lead to depression, anxiety, and may also cause financial problems (especially if your occupational performance is reduced). At times, you may feel alone or isolated because others might not seem to understand what you are dealing with. At times, your fatigue may keep you from engaging in social activities, especially during flare ups. This can lead to further isolation and loneliness. Lupus can also affect your confidence in appearing in public and keep you from social activities, separating you even further from your social life and those you care about. Since Lupus is often an “invisible” disease, it may be difficult for others around you to understand what you are going through. Some may even doubt the severity of the disease or claim that it’s “all in the head.” This can create more stress in dealing with Lupus and can even cause problems in your relationships. You may feel as if you are neglecting others around you or the little things like housework or errands. These feelings can lead to deeper depression and may even affect the way you feel physically. Since there is no cure for Lupus, you may worry about the future, asking yourself questions such as: “Will I ever feel better?”, “Am I going to start feeling worse?”, or “What about the needs of my friends and family?” These are all valid questions, but the sheer worry of the situation can cause further stress, anxiety, and depression. Besides regular treatment options for managing Lupus, there are several psychological treatment options to consider. Speaking with a therapist or simply talking to a friend about your concerns can help you battle the psychological (and ultimately even the physiological) issues that arise from dealing with Lupus. Cognitive dysfunction (also known as Lupus fog) may also take place. This is usually described as forgetfulness or difficulty thinking and these “fogs” are often described as a “fuzziness” that often arises during flares or episodes of increased symptoms. This can be a frustrating feeling as you begin to worry about completing some of the simpler tasks of daily life. Anger and irritability often arise in those who suffer from Lupus, as well as moodiness and even unpredictable changes in personality. Others may see you as a different person, as though your personality has changed. This can be heartbreaking because you know that the person inside is still there; it is just a result of dealing with and managing Lupus pain.

LUPUS CAN INCREASE RISK FOR DEVELOPING OSTEOPOROSIS

Studies have found an increase in bone loss and fracture in individuals with Systemic Lupus Erythematosus. Women with Lupus may be nearly five times more likely than those without the disease to experience a fracture from osteoporosis. Lupus sufferers have an increased risk for osteoporosis for a variety reasons. Glucocorticoids are part of the feedback mechanism in the immune system which reduce certain aspects of immune function, such as reduction of inflammation. They are used in medicine to treat diseases caused by an overactive immune system, such as Lupus. The glucocorticoid medications often prescribed to treat Systemic Lupus Erythematosus can trigger significant bone loss. In addition, pain and fatigue caused by the disease can result in inactivity, which can further increase the risk of developing osteoporosis. Some studies show that bone loss in Lupus may sometimes occur as a direct result of the disease. What is of greater cause for concern is the fact that 90% of the people affected with Lupus are women who already have an increased risk for osteoporosis.

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THINGS TO AVOID AS A LUPUS SUFFERER

Various activities and consummation of certain foods/beverages can have a detrimental effect on individuals who have Lupus and should be avoided as much as possible.

  • One of which is ingesting garlic. Some studies have shown that garlic contains three distinct substances (allicin, ajoene, and thiosulfates) that greatly increase the efficiency of your immune system. While this may sound like a good thing, it actually is not because this enhancement of the immune system can be counterproductive for those with an autoimmune disease such as Lupus. The immune system of someone with Lupus is already overactive and increasing (or basically interfering with) your immune system functions can exacerbate your Lupus symptoms.
  • The sleep aid Melatonin is also something an individual with Lupus should avoid. Melatonin also makes an impact on your immune system which may worsen certain Lupus symptoms.
  • Those with Lupus are also more susceptible to infection, especially respiratory infections, which is why smoking cigarettes is highly warned against because of the damage done to the respiratory system; smoking can increase this damage substantially. It is believed that smoking cigarettes can increase the risk of pneumococcal pneumonia and chronic bronchitis. Researchers also report that passive smoking, or regular exposure to secondhand smoke, also increases these risks for contracting this type of pneumonia.
  • Some research also suggests that alcoholic drinks should be avoided as much as possible, since they not only have an effect on our immune systems but can also cause more complications and damage to the liver and its functionality.

IN CONCLUSION

Lupus is a serious, painful, and debilitating disease. Those who go through it, should seek any possible means of treatment as quickly as possible. At the first signs of any type of Lupus, it is crucial that you see your physician right away. Get a second opinion if you are unsure about a doctor’s first diagnosis. There is no shame in doing this since Lupus is a very difficult disease to diagnose. The symptoms may come and go, making them even more difficult to diagnose. If prescription medications do not seem to help (or make things worse) search for natural treatment options. There are several natural ways to manage pain and deal with Lupus safely and effectively. Some of these treatment options may include: cold applications, topical analgesics, supplements, acupuncture, massage therapy, cognitive-behavioral therapy, meditation and mindfulness training, and nutritional options that help battle Lupus and its symptoms. Speak with your doctor about these natural ways for treating your disorder. Together, you will develop a better game plan for dealing with Lupus. Keep an open mind when it comes to new treatment options, it never hurts to try something that could ease your pain and get you back to enjoying life again. If something doesn’t work out, move on to a new option. The point is to never give up hope or to give up trying. There may be times when you feel hopeless and lost, but if you continue to search for new and effective treatment options, you may find ways to effectively manage your Lupus and keep it from controlling your life.

REFERENCES

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