If you have been handed a diagnosis of lupus, chances are that you have lots of questions. Sadly, this disease is not a simple one with simple answers. Unfortunately, you can’t just take a medication and make it all disappear.
Since this disease doesn’t really have any clear-cut signs and symptoms that other people can see, many times your friends, family, and co-workers may have a difficult time understanding just how sick you really are.
In many cases, this condition takes a while to officially be diagnosed- but you know that there is something wrong.
Lupus comes in many different shades. It doesn’t matter your race, age, ethnicity, or sex- it can affect you.
One of the reasons it is so hard to diagnose is that there is no specific set of symptoms- it affects different people in different ways and can masquerade as different diseases.
However, there is good news! You really can find help and fight this disease. Just learning about it is a great first step.
Ask lots of questions. Talk about it with your physicians, your friends, and your family. Those who are actively seeking answers to their questions are much more likely to find them.
This article will help guide you in getting started on your journey.
What Exactly is Lupus?
This is an autoimmune disease. You already know about your body’s immune system- it is an army of with lots of soldiers and the job of it is to fight off foreign substances such as viruses and germs.
However, when it comes to autoimmune diseases, you immune system is completely out of control and instead of attacking the germs, it begins to attack healthy tissues.
You can rest assured that lupus is not contagious- you won’t catch it from being around someone who has it. Additionally, it is not related to AIDS and it is not a form of cancer.
However, it is a disease that affects many different parts of your body and everyone will react differently to it.
One individual may experience fever and swollen knees, while someone else may be exhausted all the time and have problems with their kidneys. On the other hand, someone else may have rashes.
Lupus involves skin, lungs, joints, brain, heart, and/or kidneys and if you do have this condition, you may have two to three parts of your body affected. In most cases, one person is not going to have all of the symptoms.
Three Main Types
There are three main forms of lupus. They are as follows:
Systemic Lupus Erythematosus
This is the most common type of this condition and is sometimes referred to as SLE or sometimes simply, lupus. The term “systemic” refers to the fact that many parts of the body are involved. The symptoms of SLE can be very serious or very mild.
Discoid Lupus Erythematosus
This form of lupus typically affects the skin, causing a red rash to appear or the skin to change color on the scalp, face, or somewhere else on the body.
This form of lupus is caused by medications and resembles SLE, but the symptoms are much more mild. In most cases, when the medication is stopped, the disease will disappear.
Men are more at risk for this form because most of the time, procainamide or hydralazine cause it and those are used for treatment of the heart in men.
Signs & Symptoms of Lupus
This disease is often quite difficult to diagnose because it is usually mistaken for other conditions. Due to this fact, it is often referred to as the “great imitator.”
In addition, the signs and symptoms of this condition are different from one person to the next. Some individuals have just a few of the symptoms while others may have more.
Some of the most common signs of this condition are as follows:
- Unexplained fever
- Red rash/change in skin color- when on the face, often takes the shape of a butterfly
- Chest pains when taking a deep breath
- Swollen, painful joints
- Unusual hair loss- usually on the scalp
- Difficulty concentrating/memory difficulties
- Sensitivity to the sun
- Swollen glands
- Being tired all the time
- Purple/pale fingers/toes due to stress/being cold
- Low blood count
Some of the other signs and symptoms include hallucinations, unexplained problems with kidneys, repeated miscarriages, and unexplained convulsions.
When the symptoms of lupus appear, it is referred to as a “flare.” The signs and symptoms of the condition often come and go. You may experience a rash and swollen joints one week and the next, nothing at all.
Most of the time, the symptoms will flare up after you’ve had a difficult day at work or been working out in the sun.
Even if you are on medication for this condition, there will still be times when your symptoms will be worse than others. The best thing to do is learn when a flare is coming so that you can be prepared.
Many times, when a flare is coming, the individual will experience extreme tiredness, experience pain, have a fever or rash, get a headache or experience dizziness, and even have stomach discomfort.
There are ways to prevent a flare such as limiting the time you spend in artificial light or the sun, and making sure you get plenty quiet and rest.
How to Prevent a Flare
As I have mentioned, there are things you can do to prevent a flare:
- Learn to know when one is coming- educating yourself is key
- Discuss prevention measures with your physician
- Set realistic priorities/goals for yourself
- Have a healthy diet
- Limit the amount of time you’re spending in artificial light/the sun
- Get plenty of quiet time and rest
- Learn some coping skills to help deal with stress
- Do moderate exercise when you can
- Create a support system- surround yourself with those you trust and are comfortable sharing your struggles with
Causes of Lupus
There is no known cause for lupus and no known cure. However, it is known that lupus is manageable. Physicians have observed that this condition does seem to run in families, so it is possible that the condition is hereditary.
However, simply having the genes doesn’t really mean that you’ll have the disease. Environment, stress, specific medications, and sunlight can trigger symptoms in some. Research is being done to try to figure out why this is.
Who is at Risk?
The truth is that anyone can get lupus, no matter your age, sex, ethnicity, or race. However, it is clear that more women than men will develop this disease and African American women are much more likely to have it than other ethnicities. White women have the lowest occurrence of this condition.
African Americans and Latinos usually will develop this condition much younger and will have more symptoms when they are diagnosed.
Additionally, their symptoms are usually much more severe than in white people. African Americans usually have more occurrences of strokes and seizures and Latinos typically have more heart complications. It is not understood why there are some that have more problems than others.
This disease occurs most often in women between the ages of 15 to 44, which encompasses the typical child-bearing years. Some scientists have stated that its possible hormones play a role- but on the other hand, it is important to keep in mind that men and older individuals can also develop it.
Less common are diagnosis of children under the age of 15, with the exception of babies that are born to women with the condition. These children are likely to experience liver, skin, or heart problems as a result of this condition.
However, this is not to scare women who have the disease- it is possible to have a normal pregnancy and a happy, healthy baby with the proper care.
As we have said, there are really no clear cut symptoms of lupus and it affects everyone differently, so how can you find out if you have this condition?
Tell your physician about the symptoms and issues you’re experiencing to help him/her to understand what is going on. Your personal medical history will provide the physician with vital clues to your condition. Try to find a checklist of the signs/symptoms and have your friends/family help you complete it for your office visit.
Your physician will examine you and look for rashes/other signs that there is something going on.
Lab testing of blood/urine
your physician will most likely collect blood and/or urine samples to test the activity of your immune system.
A biopsy is when a portion of tissue is removed and examined under a microscope, which will show whether or not an autoimmune disorder is present.
What will the Physician Do?
If you suspect that you have this condition, you should go see your physician as soon as possible. He/she will collect your medical history and run the proper tests.
Many times, people suffer with this condition for a very long time before they find out they have it.
It is vital that you discuss your symptoms and signs with your physician so that you can get a diagnosis.
Chances are, your primary care physician will direct you to a rheumatologist, which is a specialist that treats joint/muscle diseases such as lupus.
In some cases, a dermatologist, or physician that specializes in treating skin conditions, may be involved in diagnosis and treatment of your condition.
However, remember that there is no single test that will determine if you have the disease- your physician will need to run several tests.
Using Medications to Treat Lupus
Keep in mind that this disease affects everyone differently and treatment will depend upon the symptoms that you are experiencing. Your physician may suggest you take aspirin or something similar to treat fever and swollen joints.
If you have a rash, he/she may prescribe a cream. If you have more serious issues, he/she may prescribe chemotherapy, biologic, or antimalaria medications or even corticosteroids.
Your physician will determine the best course of treatment based upon the symptoms you are experiencing.
If you experience complications with your medications, make sure to notify your physicians. Also, before you start using medications prescribed, let him/her know if you are taking any vitamin or herbal supplements, as some medications don’t interact well with these.
Coping with Lupus
In order to cope with your condition, you will need to figure out what works best for you. It may be that the rheumatologist has the best course of action available.
Additionally, there are other health professionals that will be able to help you to cope with the various aspects of the condition, such as dieticians, occupational therapists, psychologists, and dermatologists.
You may notice that exercising with a physical therapist will help you to feel better physically.
The most important thing about treatment is to make sure that you follow up with your team on a regular basis even when you’re not in the middle of a flare.
When you have to deal with a long-lasting disease that doesn’t have any clear-cut explanations and treatments, it can be very difficult on your emotions.
Those around you may not understand the way you’re feeling. You should know that anger and sadness are very common. If you are experiencing depression, consider medication and counseling.
Individuals who have this condition should understand that their energy is very limited and therefore, they must manage their time and energy wisely.
Take time to discuss your fatigue with your medical team and some good ways to combat it. Many times, you will notice that you feel much better when you’re getting adequate rest and you’re taking your medication like you should.
Keep the following in mind
- Pay close attention to what your body is saying- be sure that you stop or at least slow down before reaching exhaustion
- Spread out your work/activities and learn to carefully pace yourself
- Never blame yourself for the fatigue you’re feeling- it’s just part of your condition
- Consider going to counseling or joining support groups, which will show you that you’re not in this alone
- Consider reaching out to friends/family for some support- if they don’t understand, try to educate them
Keeping yourself healthy is much more difficult when you have this condition. However, you must do it.
You must listen to what your body, mind, and spirit are saying to you. Keep in mind that chronic diseases can be quite stressful and different people cope with stress in different ways. Some of the ways to cope with the stress are:
- Keep yourself involved in social activities
- Practice meditation and/or yoga
- Set your priorities for how you spend your time and energy
Another way to deal with lupus is exercise such as:
Range of motion/stretching: this will help to relieve any stiffness you’re experiencing as well as encourage normal joint movement. This will help you to increase or at least maintain your flexibility
Strengthening/weightlifting: this will help you to increase or keep your muscle strength, which will help to support and protect your joints
Aerobic/endurance: this will help to improve your cardiovascular fitness, overall function, and help with weight control
One word of caution: individuals with this condition should speak with their physicians before beginning an exercise program- especially if you’re not already active.
One other thing that might help is to learn all you can about the condition. Those who are well-informed are able to help plan their treatment and therefore, report experiencing less pain.
Also, they are much more likely to stay active, have higher self-confidence, and visit the doctor less frequently.
Researchers are looking into what is causing this condition and the best ways to treat it. In fact, the National Institutes of Health are very supportive of research on this condition. The research is looking at the following issues:
- Individuals who test positive for specific antibodies are more likely to experience more severe flares and in some individuals, prednisone can prevent those
- Cleaning out dead cells from the body may not work well for those with lupus and learning more about this process could lead to new treatments for this condition
- Researchers are also beginning to learn the roles of different immune cells involved in lupus, which can help to find new ways for treating this condition
- There are some specific proteins that have been identified in patients that indicate details regarding their kidney disease
- Specific genes could cause individuals to have more serious complications
- Since lupus is more common in women, researchers are studying hormones that could play a role