Wednesday, February 28, 2024

How To Explain Lupus Fatigue

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Etiology Of Fatigue In Sle

What Is Lupus?

The etiology of fatigue in the SLE population is multifactorial and is associated with physical activity, obesity, sleep quality, depression, anxiety, mood, cognitive dysfunction, vitamin D deficiency/insufficiency, comorbidities such as fibromyalgia, or related to the SLE disease itself or the treatments used to manage SLE.

Sore And Stiff Joints

Inflammation associated with lupus can cause stiffness, swelling, pain, and warmth of the joints, most commonly in the fingers, hands, elbows, ankles, and toes. Most people with lupus will experience joint inflammation at some point, says Caricchio. For many people, joint pain is one of the first symptoms of the disease that theyll notice and report.


Understanding Reactions To Stress

Some people think we’re emotionally incapable of dealing with stress, because a stressful situation will generally make symptoms worse. Sometimes, it can trigger a major symptom flare.

The important thing to understand is that we all respond to stress both emotionally and physically. A physical response, in everyone, can include a rush of adrenaline and other hormones that help kick your body into overdrive so you can deal with what’s happening.

People with fibromyalgia don’t have enough of those hormones, which makes stress very hard on their bodies. That’s why it can kick up symptoms.

Also, when we talk about “stress” we usually mean the emotional kind, which can come from your job, a busy schedule, or personal conflict. A lot of things actually cause physical stress, such as illness, lack of sleep, nutritional deficiencies, and injuries. Physical stress can have the same effect on fibromyalgia as emotional stress.

Think of what it’s like to wake up to a phone call or a frightening noise in the middle of the night when you’re in a deep sleep. Now imagine feeling that way every time you’re running late for work or you have to swerve to avoid a traffic accident, only it lasts for anywhere from hours to days. Then imagine you poured boiling water on your lap at the same time. That’ll get you pretty close to what people with fibromyalgia go through.

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Common Questions To Expect

Your doctor will ask you a series of questions to understand what may be causing your fatigue. These questions may be followed up with blood work or other tests to rule in or rule out related conditions called comorbidities. Common questions include:1

  • How well do you sleep?
  • How many hours can you work before you hit the wall?
  • What do you try to do every day?
  • How often do you feel exhausted? How long does it last?
  • Is there something you want to do but cant because of how tired you feel?
  • Have you had to give up activities you enjoy because youre too tired?

How Serious Is Sle


The seriousness of SLE can range from mild to life-threatening. The disease should be treated by a doctor or a team of doctors who specialize in care of SLE patients. People with lupus that get proper medical care, preventive care, and education can significantly improve function and quality of life.

Learn what you can do to manage lupus.

Also Check: How To Combat Chronic Fatigue

What Tips Do You Have For Explaining How Lupus Affects Your Everyday Life

Living with lupus is not always easy. When explaining what lupus is to people, I usually say its an autoimmune disease that affected my kidneys Kyra

I have to say that this is one of the hardest parts of having lupus. Most people have heard of it but have no clue what it is. If I am to be very honest, a lot of the time, I dont explain it to people. My close friends and coworkers are aware, but even they dont have a full grasp on the disease unless theyve done their own research. The easiest way to explain it is to first talk about what an autoimmune disease is. Then I like to tell them the symptoms that I personally suffer from, and that not everyone with the disease is the same. I also think its important to remind people that just because I look okay doesnt always mean I feel okay. Some days are really good, and some are really bad. I think the people who mean the most to you and are supportive of you are the ones who really need to know what you are going through. Justin

I could give a full description of what lupus is and how it affects just about every part of your body, but many people wont care or still wont understand. So, I just tell them to imagine having the flu every day of your life. And also waking up every day with the uncertainty of not knowing whether or not youll be able to make it through your day without fatigue, joint pain, digestive issues, headaches, etc. Amber

Talking about lupus with the people in your life

Can A Person Die From Sle

Causes of premature death associated with SLE are mainly active disease, organ failure , infection, or cardiovascular disease from accelerated atherosclerosis.10 In a large international SLE cohort with average follow-up of over 8 years during a 19582001 observation interval, observed deaths were much higher than expected for all causes, and in particular for circulatory disease, infections, renal disease, and some cancers. Those who were female, younger, and had SLE of short duration were at higher risk of SLE-associated mortality.11

Using death certificates for US residents, SLE was identified as the underlying cause of death for an average of 1,176 deaths per year from 20102016.12 SLE was identified as a contributing cause of death for an average of 2,061 deaths per year during that 7-year-period.13

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Get Enough Rest To Prevent Fatigue

Most people do best with at least seven to eight hours of sleep each night. If you have lupus you may need even more sleep.

âItâs important to develop good sleeping habits,â says Jolly. âIt can really make the difference in getting a good nightâs sleep

  • Take time to relax before bedtime. A warm shower or bath can help.
  • Avoid alcohol and food or drinks that contain caffeine after dinnertime.
  • Donât watch TV right before bedtime because it can be distracting. Read a book instead.

If there are times when you know you wonât get a full nightâs sleep, you may need to plan to make it up the next day.

âI canât go out on a work night like other people my age. If I donât get at least eight hours of sleep, Iâm useless the next day,â says Brown. âSo if thereâs something I want to do in the evening, I have to plan for it by setting aside time to sleep the next day.â

Even with a full nightâs sleep you may need to take several rest periods throughout your day. âSome people may need to plan short periods of rest after each activity,â says Jolly. âThis gives your body time to catch up and can make a big difference in how you feel.â

Pleuritis And Pleural Effusion

What is Lupus?

Inflammation of the lining surrounding the lungs, or pleuritis, can occur in people with lupus. This can cause symptoms such as chest pain and shortness of breath, says Luk. The pain can worsen when taking a deep breath, sneezing, coughing, or laughing. Pleural effusion, or fluid around the heart and lungs, may also develop and can cause shortness of breath or chest pain, says Caricchio.

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The Difficulty Of Explaining Lupus Fatigue To Others

Learning to live with lupus fatigue for nearly five years has been one of my greatest challenges, both physically and mentally.

Initially, it was like someone flipped a switch in the middle of the night. I woke up the next day and realized sleep hadnt rejuvenated me or boosted my energy levels. Suddenly, I was unable to recharge. I had to rethink everything I once knew about the concept of energy.

Fatigue is a regular subject of my columns because I struggle with it frequently. Since 2016, I havent spent a day without it. The lethargy ebbs and flows. Some days are better and easier than others, but its always present.

Adjusting to life with fatigue has been an arduous battle that Im still fighting. Part of me is consciously trying to adjust, rest, and be patient with my body. But theres also a part of me that still cant accept that Im restricted in a way other people arent.

True to my all-or-nothing personality, youll either find me taking it slow and easy or throwing myself over the edge with everything I have. Ideally, I would find a happy medium, but at this point in my life, Im still jumping from one extreme to another.

Why do I do this? Why do I hide away half of myself from the outside world?

There is another reason I dont disclose my tired side to anyone outside my inner circle. Its difficult for people to comprehend that fatigue is a spectrum.

Why Does Lupus Cause Weight Gain Or Weight Loss

Many people with lupus may experience weight loss. This can be caused by the medications that are used to treat lupus or from the discomfort of the disease itself. On the flip side, some people may gain weight if they find that they are inactive due to joint pain. Its important to maintain a healthy diet when you have lupus. Talk to your healthcare provider and possibly a nutritionist to determine the best diet for you.

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What Are The Different Types Of Lupus

There are several different types of lupus. Systemic lupus erythematosus is the most common. Other types of lupus include:

  • Cutaneous lupus erythematosus: This type of lupus affects the skin cutaneous is a term meaning skin. Individuals with cutaneous lupus erythematosus may experience skin issues like a sensitivity to the sun and rashes. Hair loss can also be a symptom of this condition.
  • Drug-induced lupus: These cases of lupus are caused by certain medications. People with drug-induced lupus may have many of the same symptoms of systemic lupus erythematosus, but its usually temporary. Often, this type of lupus goes away once you stop the medication thats causing it.
  • Neonatal lupus: A rare type of lupus, neonatal lupus is a condition found in infants at birth. Children born with neonatal lupus have antibodies that were passed to them from their mother who either had lupus at the time of the pregnancy or may have the condition later in life. Not every baby born to a mother with lupus will have the disease.

Number Of Factors Can Contribute To Fatigue In Patients With Lupus

Pin on Living With Lupus and Fibromyalgia ~ INVISIBLE ...

Dear Mayo Clinic:

One year ago, at the age of 33, I was diagnosed with lupus. I am taking medications to help with flares, which are reasonably controlled, but I am exhausted all of the time. Is this just a part of the disease, or is there something that can help with fatigue?


Fatigue is a major problem in 50 to 80 percent of lupus patients and can be quite disabling. The specific cause, however, varies from person to person, with many potentially treatable conditions. Identifying what’s causing you to feel run down much of the time is a good starting point.

Lupus is an autoimmune disease, meaning the immune system attacks the body’s own tissues and organs, causing inflammation and damage. Lupus can affect any system in the body, but the skin, joints, lungs, kidneys and blood are most often affected. Because lupus can affect so much of the body, it’s important that you work with a rheumatologist a specialist in the diagnosis and treatment of arthritis and other inflammatory joint conditions and/or a specialized care team familiar with lupus.

It is also important to recognize that poor quality sleep, fibromyalgia and depression are common causes of fatigue in patients. Living with the unknowns and emotional stress of a chronic disease such as lupus can cause a person to become clinically depressed. If you have feelings of hopelessness or general sadness, or if you have a loss of interest in daily activities, let your rheumatologist know.

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How Lupus Is Diagnosed

Lupus, also called systemic lupus erythematosus, is not always easy to diagnose because it can be similar to other conditions.

Symptoms include inflammation of different parts of the body including the lungs, heart, liver, joints and kidneys.

The GP will usually do some blood tests. High levels of a type of antibody, combined with typical symptoms, means lupus is likely.

You might be referred for X-rays and scans of your heart, kidney and other organs if the doctor thinks they might be affected.

Once lupus is diagnosed, you’ll be advised to have regular checks and tests, such as regular blood tests to check for anaemia and urine tests to check for kidney problems.

Lupus Fatigue: Causes Treatment And Managing Expectations

The unrelenting exhaustion of lupus fatigue affects up to 80% of those living with SLE. Read on to learn what the medical community has to say about its causes, symptoms and some of the best ways to cope with this extremely common and sometimes debilitating condition.


Fatigue is more than just a desire for a shot of espresso in the morning or the need to hit the sack a little early to make up for a late night out. Fatigue can be a physically and emotionally debilitating conundrum one that is not easy to solve and it goes beyond curling up on the couch with a throw blanket and a good movie waiting for of sleep to take its course. Fatigue can mean that sleep itself is illusive.

In their article Fatigue in Systemic Lupus Erythematosus, researchers Grace Ahn and Rosalind Ramsey-Goldman note that approximately 53-80% of individuals with SLE report experiencing fatigue as one of their main symptoms. According to the Mayo Clinic, fatigue is the feeling of unrelenting exhaustion that is profound and isnt relieved by rest. It can grossly affect your ability to function day-to-day and experience a good quality of life. Fatigue is a loss of energy you may fear youll never recoup. Therefore, fatigue is not only physically draining, but can be emotionally devastating as well.

What are the causes and symptoms of lupus fatigue?

What does the research say about managing lupus fatigue?

Combating and Coping with Fatigue

In Conclusion


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How To Work With Your Doctor To Understand Fatigue

While fatigue is a common experience, Dr. Berman believes both patients and healthcare professionals do not know enough about how to manage fatigue well.

Dr. Berman said doctors generally do not do a good job addressing their lupus patients’ concern about fatigue because many other important medical issues seem to take priority during each appointment. One way to make sure they are addressed is to talk about it at the beginning of the appointment. Here are some of the questions she asks her patients to get an idea of what to discuss with your doctor:

Dr. Berman said it’s important to help your doctor prioritize during your visits. She suggested writing down the top one or two issues you want to talk to your doctor about and bringing them up in the beginning of your visit, so it can focus the appointment.

In summary, there are several ways your doctor can help you manage your fatigue. The first is to look for and treat any other medical conditions that may be contributing to it. Secondly, it is important to examine your current medications and the possibility that one of them is contributing to fatigue . In addition, if you are suffering from insomnia, your doctor may want to prescribe a sleep agent. Some doctors may add an “activating” medicine, such as Wellbutrin or Provigil, to improve your ability to function with fatigue. In some situations getting more exercise may be beneficial as well. Again, talk to your doctor about your individual case of lupus and fatigue.

How Is Sle Treated

What is lupus?

Treating SLE often requires a team approach because of the number of organs that can be affected.

SLE treatment consists primarily of immunosuppressive drugs that inhibit activity of the immune system. Hydroxychloroquine and corticosteroids are often used to treat SLE. The FDA approved belimumab in 2011, the first new drug for SLE in more than 50 years.

SLE also may occur with other autoimmune conditions that require additional treatments, like Sjogrens syndrome, antiphospholipid syndrome, thyroiditis, hemolytic anemia, and idiopathic thrombocytopenia purpura.1

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Effect On Other Body Systems

Lupus can also affect the following systems:

Kidneys: Inflammation of the kidneys can make it difficult for the body to remove waste products and other toxins effectively. Around 1 in 3 people with lupus will have kidney problems.

Lungs: Some people develop pleuritis, an inflammation of the lining of the chest cavity that causes chest pain, particularly with breathing. Pneumonia may develop.

Central nervous system: Lupus can sometimes affect the brain or central nervous system. Symptoms include headaches, dizziness, depression, memory disturbances, vision problems, seizures, stroke, or changes in behavior.

Blood vessels: Vasculitis, or inflammation of the blood vessels, can occur. This can affect circulation.

Blood: Lupus can cause anemia, leukopenia or thrombocytopenia .

Heart: If inflammation affects the heart, it can result in myocarditis and endocarditis. It can also affect the membrane that surrounds the heart, causing pericarditis. Chest pain or other symptoms may result. Endocarditis can damage the heart valves, causing the valve surface to thicken and develop. This can result in growths that can lead to heart murmurs.

You Can Then Talk About What Lupus Is:

  • Lupus is an autoimmune disease. In some ways, lupus represents a kind of allergic reaction by the body, in which the immune system sees the bodys own healthy tissues and cells as foreign.
  • Lupus is a chronic disease. This means that anyone who develops lupus will have lupus for the rest of his or her life. As with other chronic illnesses such as diabetes or asthma, there is no cure for lupus yet. However, there are medications and lifestyle adjustments that help most people live active and productive lives in spite of these illnesses.
  • Lupus has many different symptoms, and because of that it affects each person differently. Lupus can cause a mild skin rash or achy joints, or can involve the kidneys, heart, lungs, brain, or other internal organs. What most people do not realize, however, is how much effort it may take you to function day-to-day when you have to cope with extreme fatigue, chronic pain, memory loss, medication side effects, and/or visible skin lesions.
  • Lupus is unpredictable: It is a disease of flares and remissions . Knowing that lupus is unpredictable may help other people understand your physical and emotional ups and downs as well as the changes that you may have to make to schedules, plans, and commitments

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