How To Deal With Lupus Fatigue

Pain & Fatigue In Sle

Pain related to arthralgias and arthritis can occur in up to 95% of SLE patients during the course of their disease . Zonana-Nacach et al. found that pain among other psychosocial cofactors does contribute to higher levels of fatigue in these patients . In this study, patients subjectively estimated their pain attributable to SLE with 010 VAS, and fatigue was measured with the Fatigue Severity Scale . During their analysis, a significant positive association was found between levels of fatigue and self-reported pain attributed to SLE among other variables . Jump et al. studied correlations between pain, psychological distress and their association with fatigue in SLE patients. One hundred and twenty-seven participants completed questionnaires for fatigue, disease activity, pain and depression. As predicted, fatigue was the most highly rated symptom compared to other complaints, with higher scores seen on VAS for pain. When they conducted a correlational analysis, fatigue was moderately associated with pain intensity and depression .

Oral And Nasal Lesions

The large majority of lupus sufferers report the painful development of sores or lesions inside the mouth or nose. The mouth sores are very similar to canker sores, which can make eating, drinking, and speaking very painful. In the case of sores located within the nostrils, breathing may become restricted, and the patient may experience pain and tenderness when coming in contact with the lesions.

A related symptom can result from light exposure, or photosensitivity. Some people with lupus can develop lesions on their skin surfaces after prolonged periods in the sun, while others report that their skin problems seem to get worse after going outside on a sunny day. The link between lupus skin lesions and sunlight isnt fully understood by doctors, but the bottom line is that if you start to experience these symptoms, you should visit your doctor for an explanation.

Number Of Factors Can Contribute To Fatigue In Patients With Lupus

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?

Answer:

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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Who Does Lupus Fatigue Affect And How Does It Affect Them

An estimated 40% of Lupus patients experience persistent severe fatigue. Fatigue experienced by Lupus patients differs from fatigue experienced by healthy individuals. Lupus-related fatigue feels similar to having the flu and is not made better by rest or sleep. It can make everyday tasks, like showering, difficult and can be made worse by such tasks.

Plan Ahead And Prioritize Your Activities

• When you have to drive, group your errands so that you can rest afterward.
• Shop online and have items shipped directly to you.
• Prepare meals in advance arrange for help with chores.
• Be choosy about which activities and events you can attend and which you must regretfully decline. Remember, your health comes first.

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Physical Activity & Fatigue In Sle

Previous studies of patients with SLE have shown the impact of aerobic or muscle strengthening or supervised exercise strategies on improved health outcomes including fatigue , improved exercise tolerance and quality of life . When aerobic capacity is measured in the physiology laboratory, even patients with mild SLE struggle with performing daily activities and their performance is comparable to levels in individuals with severe cardiopulmonary and metabolic disease . SLE patients were found to be less fit with reduced levels of aerobic fitness and reduced exercise capacity including reduced muscle strength, reduced resting lung function, depressed mood, poor sleep quality and functional incapacity, and this physical disability correlated with increased levels of fatigue by a linear regression model . In one study of women with SLE that measured aerobic capacity with a bicycle ergometer exercise test during low-to-moderate activity, VO2 max was significantly lower in SLE females than levels predicted for sedentary women . Another study looking at SLE women and aerobic capacity supported the previous studys findings that aerobic capacity measured by peak oxygen consumption during the treadmill tests was decreased in SLE women compared to controls, was lower than expected for physiologic deconditioning and that this aerobic insufficiency was highly correlated with the perception of severe, activity-limiting fatigue in this population .

Coping With Lupus: A Guide

Having lupus can make everyday life challenging. When your lupus is active, symptoms like joint stiffness, pain, fatigue, confusion, or depression can make simple tasks difficult and sometimes impossible. Since these symptoms arent visible, the people around you may have trouble understanding how you feel.

Its important not to ignore the limitations that come with this disease. However, there are steps you can take to stay involved with work, relationships, and the activities you care about. Start by following these strategies to help you lighten the burden of your illness and maintain a fulfilling life.

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Who Can Get Lupus

Roughly 5 million people worldwide have some form of lupus. Nine out of 10 adults with lupus are women, and women of childbearing age are most likely to develop the disease. Women of color are also more likely to develop lupus compared with Caucasian women.

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If you answered yes, it might be time to talk to your doctor about adding BENLYSTA to your treatment plan.

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For people 5 years with active SLE or active lupus nephritis on other lupus medicines. Not for people with severe active central nervous system lupus. Serious side effects may include death, life-threatening brain infection , and certain cancers. Tell your doctor …

BENLYSTA is a prescription medicine used to treat people with active systemic lupus erythematosus or active lupus nephritis who are receiving other lupus medicines. Its unknown if BENLYSTA is safe/effective in children under 5 years when given in a vein or under 18 years when given under the skin. BENLYSTA is not for people with severe active central nervous system lupus.

Before receiving BENLYSTA, discuss with your healthcare provider if you:

Common Symptoms Of Lupus

Health Check Certified By: Dr. Gerald Morris

Lupus is an autoimmune disease, which means the body attacks its own cells and organsincluding the skin, joints, heart, lungs, blood, kidneys, and brainbecause it cant differentiate between foreign germs and viruses and healthy cells.

When the bodys immune system turns on itself, the inflammation, pain, and swelling thats so familiar to lupus sufferers can become a permanent and painful part of everyday life.

However, with the proper diagnosis, treatment plan, and management, lupus sufferers can reduce symptoms and live more comfortably. Here are the 15 primary symptoms of lupus

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Disease Activity & Fatigue In Sle

One would suspect that having SLE, a chronic disease, itself would contribute to fatigue, but findings have been more conf licting, with some showing significant positive association , and others with weak or no association . Wang et al. studied the relationship between fatigue and disease activity in the SLE population using the Systemic Lupus Erythematosus Disease Activity Index and fatigue using the FSS. No significant correlation between FSS and Systemic Lupus Erythematosus Disease Activity Index were found, and they concluded that fatigue in SLE patients does not correlate with disease activity . Another study demonstrated that fatigue symptoms do not correlate well with any of the laboratory measures, but physicians rating of disease activity correlated well with patients fatigue . Tayer et al. investigated the contributions of disease status, feeling of helplessness and depression to fatigue in SLE patients. Eighty one SLE patients underwent clinical evaluation with the Systemic Lupus Activity Measure and completed self-reported questionnaires on psychosocial data, depression, feelings of helplessness and fatigue. The authors concluded that SLE disease status predicted fatigue at two different time points in the longitudinal analysis, independent of depression and helplessness, by using hierarchical multiple regression analyses .

Take Care Of Your Skin

• Ask your doctor about the use of corticosteroid creams for skin symptoms.
• If you are bothered by the way a lupus rash looks on your face or if you have scars from lupus, you can try makeup, such as Covermark, to cover the rash or scars.
• Stay out of the sun, especially when the sun’s rays are the strongest, usually between 10 a.m. and 4 p.m. If you must be in the sun, cover your arms and legs, and wear a hat. Make sure to use a broad-spectrum sunscreen that has a sun protection factor of 50 or higher. Put more sunscreen on after swimming, sweating, or toweling off.

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Fatigue Is An Almost Universal Problem For Lupus Patients And One Of The Most Common Symptoms Of Lupus Many Research Studies Show That A Whopping 90 Percent Of People With Lupus Experience Some Level Of Fatigue Which Can Totally Disrupt Their Lives

An afternoon nap does the trick for some people, but sleeping too much during the day can lead to insomnia at night. It may be hard to do, but if you can remain active and stick to a daily routine, you may be able to keep your energy levels up.

Many different factors are responsible for the severe tiredness many patients experience and this makes it difficult to give advice on how to combat this debilitating complication of lupus. Fatigue can be influenced by anaemia, depression, pain, quality and/or quantity of sleep, severity of illness, as well as flares, medications and stress, so other possible causes should also be ruled out.

Although exercise may be the last thing you want to do if youre feeling tired, it can actually boost your energy levels. Research from the lupus unit has clearly shown that regular gentle exercise is beneficial in combating fatigue. Our results also show that gentle/low impact exercise will not damage your joints or cause your lupus to flare. Click here to see our article on exercise.

Another recent piece of research from the our lupus researchers has shown that keeping your weight down significantly improves fatigue. There are no specific dietary recommendations but our research has shown the low glycaemic index diet to be very beneficial to lupus patients. Click here to see our article on weight loss.

Sleep & Fatigue In Sle

Other studies supported the finding of increased unrestorative sleep in SLE patients by showing high frequency of primary sleep disorders including sleep apnea and abnormal limb movements during sleep in SLE patients, as well as increased daytime sleepiness due to sleep fragmentation and more arousals . One study assessed 100 women with SLE and their sleep quality by utilizing the Pittsburgh Sleep Quality Index , a questionnaire that assesses sleep quality and disturbances over a 1-month period. Completed questionnaires reflected moderate-to-severe sleep impairments in 56% of the SLE population. Cumulative damage, disease activity, functional disability, pain severity, use of prednisone, depressed mood and lower levels of exercise participation were all positively correlated with poorer sleep quality .

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Factors Associated With Fatigue

• SLE patients aerobic capacity is often decreased compared to healthy controls and studies have shown improved health outcomes including decreased fatigue from increasing physical activity.
• Obesity is prevalent in the SLE population, with a BMI above 30 kg/m2 associated with worse depression and fatigue.
• A bidirectional relationship exists between fatigue and poor sleep, with SLE cohorts usually experiencing more sleepwake disturbances and unrestorative sleep.
• Depression has been consistently associated with fatigue and anxiety and mood disorders have been correlated with fatigue in SLE patients compared to healthy controls.
• Suboptimal levels of vitamin D have been reported in the SLE population, with vitamin D deficiency correlating with worse fatigue.
• There is a positive correlation between pain intensity and fatigue in the SLE population.
• No significant associations were found between corticosteroids or NSAID use and fatigue severity.
• Coexisting fibromyalgia, thyroid disease and anemia may also affect fatigue in SLE.
• Conflicting theories exist, with one side showing positive correlation between SLE disease activity and fatigue, and the other arguing for weak or no association.

How Can I Get Better Sleep

Try these tips to improve your sleep and feel better throughout the day.

Make your bedroom a good place for sleep

A calm and relaxing environment will make it easier for you to get a good nights sleep.

• Keep your bedroom cool and dark. If bright light outside your window is keeping you awake, blackout curtains or shades can help.
• Choose a comfortable mattress, pillow, and bedding.
• If distracting sounds keep you up at night, try a white noise machine or a fan.
• If your pets tend to wake you up during the night, have them sleep in another room.

Create a bedtime routine

Following the same routine every night is the key to sleeping well.

• Make time to relax before bed. Activities like reading, journaling, or taking a warm bath can help you fall asleep faster and sleep better.
• Its best to stop eating an hour or 2 before bedtime. If you do eat a bedtime snack, choose something light and bland, like applesauce or crackers.
• Avoid drinks with caffeine, like soda or coffee, before bed. Keep in mind that black or green teas can also contain caffeine.
• Try to turn off electronic devices like your computer, tablet, smartphone, or TV 30 minutes before bedtime.
• If you cant sleep, try the 15-minute rule: If you lie awake in bed for more than 15 minutes, get up and relax in another room until you start to get sleepy.

Can alcoholic drinks help me sleep?

Create a morning routine

Plan your naps

Get moving

Learn more about exercise and how it can help you manage your lupus symptoms.

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Fighting Lupus Fatigue And Boosting Energy

Fatigue is one of the most common symptoms of lupus. In fact, most people with lupus have fatigue at some point in their illness.

âWhen lupus hit, it was like running into a wall at 80 mph,â says Ann S. Utterback, PhD, a broadcast voice specialist in Virginia who was diagnosed with lupus in 2006. âI had been very active my whole life, and the fatigue just knocked me flat. Most days I have about four good hours.â

Experts arenât certain what causes the fatigue of lupus. In some patients it may be caused by fibromyalgia, a syndrome of widespread muscle pain and fatigue. About one-third of people with lupus have fibromyalgia. In other cases, the fatigue can be caused by another condition, such as anemia or depression. Fatigue can also be a side effect of medication.

If fatigue hinders you, there are ways you can try to increase your energy with lupus. This article offers five key ways to cope with fatigue and boost your energy levels.

What Can I Do To Control My Lupus Symptoms

The best way to keep your lupus under control is by following your treatment plan and taking care of yourself. These steps can help.

• Learn how to tell that a flare is coming.
• See your doctors regularly.
• Limit the time you spend in the sun and in fluorescent and halogen light.
• Get enough sleep and rest.
• Build a support system made up of people you trust and can go to for help.

Despite your best efforts to follow your treatment plan and take good care of yourself, you may have times when your lupus symptoms are worse. Talk to your doctor about ways to relieve symptoms when this happens.

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What Is Lupus Nephritis

Lupus nephritis is a complication of lupus that causes the immune system to attack and inflame your kidneys. This inflammation can make it difficult for the kidneys to function properly.

Lupus nephritis symptoms may not be apparent in the early stages. Its important to let your doctor know of any lupus nephritis symptoms you may experience after being diagnosed with lupus.

Common symptoms of lupus nephritis include:

• Sudden and unexplained swelling, especially in the extremities or the eyes
• Blood in the urine

• Elevated blood pressure
• Foamy or frothy urine

This list is not all-inclusive, and BENLYSTA may not help with all of these symptoms. Consult your doctor to see if BENLYSTA is right for you.

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