Adapted From A Presentation At The Sle Workshop
Fatigue is a very common complaint among those living with lupus. HSS Rheumatologist, indicates that research estimates 40% of lupus patients have persistent severe fatigue, meaning that the fatigue stays for a long period of time. However, in her practice she believes that almost 100% of people living with lupus experience fatigue at some point in the disease.
Accept Fatigue As A Condition Of Having Lupus
- Refuse to indulge in self-blame. It is not your fault that you have lupus.
- Make rest time a priority, and make sure your family knows why. If you rest now, you can participate later.
- Challenge yourself to ask for what you need. Asking for help will become easier with time and practice.
- Accept help thats offeredit will result in stronger bonds between you and those who care about you.
Eat Breakfast Every Day
Your mother likely harped on this when you were a small child. Guess whatMom was right. When you first wake up, your blood sugar is low. Eating a proper breakfast can serve as an energy booster. Skipping breakfast drains your energy, contributing to the fatigue problem. It’s important to eat nutritiously at every meal but focus on breakfast to start your day off right.
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Be Aware Of Medication Side Effects
While it is necessary for most arthritis patients to take medications to treat pain and other symptoms, drowsiness is a common side effect of many of these drugs. Pain medications, some NSAIDs, DMARDs, and tricyclic antidepressants are among the medications that list drowsiness as a known side effect. If the medications are part of a daily regimen, drowsiness may add to already-present fatigue.
Talking To Others About Lupus
Others wont be able to see most of the symptoms caused by your lupus. When symptoms like pain, fatigue, depression, or joint stiffness make your regular tasks more difficult, its important to know how to talk to those around you.
It may help to start by explaining what lupus is not. Let people know that is not contagious, nor is it like cancer or HIV or AIDS. Then explain what lupus is. Let them know that it is chronic, which means you will have it forever, and that it affects each person differently.
Your conversations with others about lupus may change depending on who you are talking to.
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Learn How To Control Stress
When a person is under excessive stress, breathing becomes more shallow, limiting oxygen that’s available to the body. Start breathing deeply to consciously ward off the effects of stress. Take 5 or 10 deep breaths when you feel stressed and fatigued. Breathing exercises and meditation are techniques you can practice any time practicing them will arm you with the tools you need to react to stress and fatigue.
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.
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Looking After Your Mental Health
Because of the pain, fatigue and disruption to life, lupus can cause anxiety and depression.
Its important to talk to someone you trust if youre feeling down or worried. This could be a friend, relative or a healthcare professional. Versus Arthritis has a helpline if youd like to speak to one of our trained advisors. Our helpline is open Monday to Friday from 9am to 8pm. Call free from the UK on 0800 5200 520.
Even if it doesnt affect the course of the condition, emotional stress can sometimes make lupus seem worse. Its not always easy, but there are things we can all do to help manage stresses in our life. For example you might want to try relaxation techniques such as meditation or mindfulness.
Your doctor may be able to refer you to a psychologist who can help with coping strategies.
Therapies such as cognitive behavioural therapy may help. This is a talking therapy that can help you manage problems by changing the way you think and behave. Its most commonly used to treat anxiety and depression, but can be useful for other mental and physical health problems.
Regular exercise can improve feelings of stress, anxiety and depression.
Why Does Lupus Cause Hair Loss
One of the complications of lupus can be damage to your skin and hair loss. People with lupus can develop scarring on their skin and scalp from rashes. This can cause your hair to thin and fall out. You could also experience hair loss as a side effect of some medications that treat lupus hair loss can be a side effect of steroids. If your hair is thinning or falling out, talk to your healthcare provider. Sometimes, changing your medications can help with this issue. Your provider might also recommend using gentle shampoos .
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Can Lupus Be Prevented Or Avoided
You cannot avoid lupus since the cause of it is unknown. However, you may be able to help prevent flares. Common triggers include:
- Lack of rest.
- Infections.
- Injuries.
If you take medicines to help manage lupus, do not stop taking them without your doctors approval. This can cause flares as well.
Knowing the things that cause flares can help you better cope with your symptoms.
Do A Mental Health Check
Check in with yourself to establish what mental patterns may be causing low energy levels. Anxiety symptoms include feeling worried, irritable, and nervous. Symptoms of depression include feeling sad, restless, and hopeless. Both conditions can lead to unhealthy sleep patterns and cause tiredness.
Consider seeing a therapist for talk therapy, known as cognitive behavioral therapy . This method helps you to get to the root cause of emotional issues so that they can be addressed and overcome.
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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.
How Is Lupus Diagnosed
The diagnosis process can be long and difficult for lupus. The symptoms that you might experience with lupus can overlap with those of other conditions for example, diabetes and arthritis. Symptoms of lupus may also take time to develop, adding to the challenge of diagnosing the disease.
Your healthcare provider will typically start with a family history to see if lupus runs in your family. Then, your provider will want to discuss any symptoms youve experienced. After talking to you about your symptoms, your provider will typically do some lab tests. These tests are looking for things like low blood cell counts, anemia and other abnormalities.
The provider may also do an antinuclear antibody test. This test looks for antibodies proteins in your body that defend against disease that could be a sign you have an autoimmune disease. People who have systemic lupus erythematosus usually test positive for ANAs.
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Research And New Developments
Versus Arthritis supports a wide range of projects that aim to prevent the onset of lupus, transform its treatment and ultimately find a cure.
New therapeutic approaches that target cells and molecules believed to be part of the cause of lupus are being used to help many patients. Further research studies should allow us to find out how these and other drugs can be used to the best effect.
Were currently funding research into many aspects of lupus, for example:
- A study, being carried out at University College London, is looking into the potential link between a lack of iron in the blood and fatigue in lupus patients. This could lead to the development of new treatments to combat fatigue.
- Research is investigating how messaging molecules influence the response produced by the body to rituximab. This could lead to new treatments.
- A pilot study is investigating if a medication called belimumab can be used to prevent relapses after rituximab therapy. This could eventually provide a new treatment option for lupus patients.
- Research is looking at why vascular disease often develops in people who have lupus. This could lead to the development of new drugs that could reduce the risk of heart attack or stroke in lupus patients.
- Research is helping us to understand how changes in a specific gene contribute to the risk of developing adult lupus, and which genetic factors lead to the development of lupus in children. This could help develop new treatments for children and adults.
Build Peace And Relax
CFS can be debilitating both physically and mentally. Suffering from persistent exhaustion, reduced brain cognition, chronic muscle and joint pain, stress, and even guilt takes a toll on the body, and psyche.
Long-term stress control and relaxation must be a vital portion of any protocol used to overcome chronic fatigue syndrome. While seemingly impossible, its imperative that sufferers of CFS do their best to effectively manage stress, and rest.
The Power of Rest
Rest means more than just sleep. Dedicate one day per week when you dont have any responsibilities or commitments. Truly commit to a full day of rest. This gives your body and mind a much-needed respite helping to fight stress, anxiety and exhaustion. Its also important during the week, if you are having a particularly difficult day, to not overtax yourself.
While regular exercise supports wellness and helps to diminish stress, individuals with chronic fatigue syndrome need to exercise at a controlled intensity. High-intensity workouts can leave you drained for several days.
Exercise Therapy
Exercise therapy has been shown to help with fatigue, mental clarity and depression in patients with chronic fatigue syndrome. According to a study released in the European Journal of Clinical Investigation, individuals with CFS were recommended to perform aerobic activities, at the clinic twice per month, in combination with at-home exercises for roughly 5-15 minutes in duration, five days per week.
Sleep
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I Improve My Quality Of Sleep
My fatigue is intensified by insomnia, which I experience as part of my lupus. If going to bed at the same time each night doesn’t fix the problem, I take melatonin and other over-the-counter sleep aids. I’ve also needed prescription sleep medication from my doctor. Be sure to consult your doctor before trying any sleep aids.
Are We Making The Right Choices In Foods To Fight Fatigue
The moment we feel low on energy or tired, we turn to caffeinated drinks or energy bars to perk up ourselves. A cup of coffee, a can of energy drink, a granola bar or some sugary snack looks so appealing when we are tired. But do these choices help? Doctors and nutritionists believe that they may provide initial energy high but soon the levels plummet, and we end up feeling more tired than before.
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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.
Fatigue Cause No : Sleep Apnea
Some people think theyre sleeping enough, but sleep apnea gets in the way. It briefly stops your breathing throughout the night. Each interruption wakes you for a moment, but you may not be aware of it. The result: youâre sleep-deprived despite spending eight hours in bed. Your doctor may order a sleep study to check for this.
Fix: Lose weight if youre overweight, quit smoking, and you may need a CPAP device to help keep your airway passages open while you sleep.
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Modifying Behavioural Components To Fatigue
Significant central fatigue warrants lifestyle changes, which may include rest periods and reduced workloads . However, the maintenance of physical activity is of paramount importance. The natural inclination of patients with central fatigue is to decrease physical activity. However, decreased physical activity over time will lead to cardiovascular and muscular deconditioning, which then makes physical activity even more difficult . Therefore, all patients need to be counselled with regard to maintaining an appropriate level of activity. In addition, an increase in activity should be attempted through the institution of a graded exercise program .
Chronic Fatigue Syndrome is a chronic illness characterized by extreme fatigue that lasts for more than six months. This fatigue cannot be explained away by an underlying medical condition. In fact, one of the diseases principle challenges is that its impossible to diagnose with laboratory tests. However, some professionals believe it is closely related to adrenal fatigue or system wide inflammation of the body.
The process for diagnosis usually begins with ruling out possible underlying diseases and chronic conditions until the only choice left is chronic fatigue syndrome. Left untreated, it decreases stamina, memory and concentration.
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 .
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If I Have Lupus Will I Pass It On To My Children
There can be a genetic factor to lupus. Your risk of having lupus increases if you have other family members with the condition. A mother with lupus can pass it on to her child. However, this doesnt always happen, nor does it happen often. Some women with lupus deliver a baby with the condition, while others do not. If you have a family history of lupus or have lupus yourself and are thinking about getting pregnant, talk to your healthcare provider.
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.
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