Meeting Others With Lupus
Lupus is a difficult condition to live with and throws up many challenges, especially during periods of life when you may need more energy.
Meeting others with lupus doesnt necessarily remove these challenges but it can help you to cope with them by sharing your thoughts and concerns with someone who understands. You may have access to an education programme through a lupus nurse specialist or you may wish to meet others through patient support groups such as LUPUS UK.
Treat Underlying Conditions That May Cause Fatigue
âFatigue with lupus is sometimes caused by an underlying medical problem, such as anemia, fibromyalgia, depression, or a kidney or thyroid problem. And in some cases, it can be a side effect of medication,â says Meenakshi Jolly, MD, MS, director of the Rush Lupus Clinic and assistant professor of medicine and behavioral medicine at Rush University. âIn these cases, we can often treat the fatigue by treating the condition or changing the patientâs medication.â
Ask your doctor to check if your fatigue may be related to another condition or a medication. If it is, find out about treatment.
Get Regular Exercise To Boost Energy
Although working out may be the last thing you want to do if youâre feeling tired, exercise can actually boost your energy level.
âI started walking as soon as I could,â says Adam Brown, who was diagnosed with lupus in 2007, at age 23. âI couldnât do much at first, but as soon as I started walking my energy level really jumped. Then I started walking everywhere, and my problems with fatigue literally went away.â
Although Utterback still deals with fatigue, exercise has helped her as well. âWhen I exercise, I can add another good hour to my day,â she says. âAnd when I donât exercise, I definitely feel worse.â Because she experiences joint pain, Utterback usually exercises in a heated pool, which is easy on her joints. But she also walks and lifts weights.
âItâs important to get as much exercise as you can tolerate,â says Jolly. âFor some people that may mean just a short walk, while others may be able to do a whole exercise routine. The key is to find whatâs right for you. Listen to your body and let it be your guide.â
Donât be afraid to push yourself a bit. âSome days I really donât want to go to the gym, but I force myself to go anyway, because I know Iâll feel better once I exercise,â says Utterback. âOne of the biggest mistakes Iâve made is not exercising when I feel really lousy. Iâve learned that if I can get on the treadmill and just do a few minutes, I end up doing more and feeling better.â
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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 .
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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Discoid Lupus And Fatigue
Discoid lupus causes symptoms other than skin lesions. Discoid lupus and fatigue are closely related, as people with discoid lesions can also experience systemic lupus. Systemic lupus also causes chronic pain and inflammation, fever, weight gain, weight loss, mouth sores, shortness of breath, dry eyes, chest pain, anxiety, easy bruising, memory loss and depression.
You May Feel Extremely Exhausted
When your lupus develops fatigue, you can feel extremely tired. Chronic fatigue will take tired step to step. After a long time, you dont have enough energy to do anything you like. You even cant go out or you may only get off the sofa. Especially, you will be too exhausted after completing your work or study. In fact, the thing you can do all day is sleep.
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Medication & Fatigue In Sle
Reports suggest that medications used to treat SLE may themselves be associated with fatigue. One study showed that fatigue scores did not differ significantly between SLE patients taking corticosteroids and those who were not taking corticosteroids, but patients taking NSAIDs reported significantly higher fatigue scores compared to those who were not. Pain scores were reported to be higher among those patients taking NSAIDs, but when corrected for pain as a contributing factor for the fatigue scoring, the difference was no longer apparent. Also the use of psychotropic medications such as antidepressants or anxiolytics did not make a significant difference on the reporting of subjective fatigue between those taking and those not taking these medications .
Ways To Manage Lupus Fatigue
Be open about your fatigue and how it affects you
- At doctor appointments, explain how fatigue affects you. Ask for lupus fatigue resources, and ask your doctor to support your efforts.
- Bring someone close to you to your next appointment.
Listen to your body and understand your limits
- Aerobic exercise is an effective non-drug treatment for lupus fatigue. High-impact exercise isnt a mustwhats important is doing some kind of movement and/or strength-building activity every day. Look for exercise classes designed for your fitness level.
- Alternate daily activities with short periods of rest. But be aware that sleeping during the day could interfere with your nightly sleep pattern.
- Plan your energy use so that todays essential tasks are done, while the rest wait until tomorrow.
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.
Accept fatigue as a condition of having lupus
Make adjustments in your life that will help you live better
- Join a support group to learn more fatigue-fighting tips.
- Establish good sleep patterns and a healthy diet.
- Smoking reduces your available energy by restricting blood flow to your heart and lungs. If you smoke, make a commitment to stop.
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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 .
What Are The Symptoms Of Lupus
Lupus can affect many parts of the body, including your joints, skin, and organs. It depends on the kind of lupus you have. Symptoms can develop quickly or slowly. They also can come and go and be mild or severe.
Not everyone who has lupus has the same symptoms. Common symptoms of lupus may include:
- Fever.
- Sensitivity to the sun or light.
- Joint pain or swelling.
- Chest pain with deep breathing.
- Trouble thinking, and/or memory problems.
- Kidney problems.
Many people also have symptoms that affect their skin and hair, such as:
- Red rashes, often on the face and in the shape of a butterfly
- Mouth ulcers.
Lupus may also cause symptoms that affect the blood and blood vessels:
- Low blood count.
- Pale or blue fingers or toes from cold or stress .
Less common symptoms include:
- Weight loss or weight gain.
- Dry eyes.
- Hallucinations.
- Repeated miscarriages or other infertility problems.
Children can have the same symptoms of lupus as adults. The most common symptoms in children are:
- A red, butterfly-shaped rash over the bridge of the nose and the cheeks.
- Low red blood cell count .
- Low white blood cell count .
- Severe brain or kidney problems.
It is common for lupus symptoms to come and go. Often, they may disappear for a period of time called remission. You may get new symptoms all of a sudden. When symptoms appear or get worse, its called a flare. You may have swollen joints and muscle pain one week and then no symptoms at all the next week.
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Obesity & Fatigue In Sle
The prevalence of obesity in SLE is between 28 and 50% . Few studies have documented associations between diet and nutrient density with SLE and/or fatigue, although adverse associations between obesity and fibromyalgia, functional capacity based on the difficulty performing activities of daily living and inflammatory markers have been noted in SLE . Data from LUMINA, a multiethnic SLE cohort study, showed that 28% of the patients were obese, with a BMI of 30 kg/m2 and above, and that this was associated with worse depression and fatigue . Another study showed a prevalence of obesity of 39% and demonstrated a positive association between obesity and higher levels of fatigue in the SLE cohort . Obesity and SLE are both inflammatory diseases with evidence of increased TNF- levels in SLE and evidence of increased C-reactive protein and IL-6 levels . Higher concentrations of both C-reactive protein and IL-6 increase concerns that these patients may be at higher risk of developing vascular disease. Identifying obesity as a cause of fatigue and poor quality of life in SLE is important, because this risk factor can potentially be modified.
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.
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The Cycle Of Fatigue And Cognitive Dysfunction
In those with , , the story of and is what Dr. Melanie Harrison compares to the story of the chicken and egg. Each symptom directly impacts the other and can wreak havoc upon the human body by forcing one to endure an ongoing cycle of confusion caused by exhaustion, which is caused by confusion, which is caused by exhaustion, and so on. Such a scenario is hard for individuals to live with and difficult for physicians to diagnose.
Among the general population of the United States, fatigue is the main complaint in over ten million doctor visits, or one quarter of all visits annually. This is largely because the condition itself is so dynamic many patients suffering from fatigue often complain of physical fatigue, where joints and bones are just worn out, while others describe more of a psychological fatigue that results from the . Still others complain simply of mental fatigue, when their mind is hazy or not operating as clearly as they believe it should. At different times and in different ways, just about anyone can suffer from one or any combination of these ailments.
Fatigue, especially related to autoimmune diseases like lupus, is often persistent, Dr. Harrison says. Its very intangible, but you know the difference – especially those with lupus know the difference. Its not the same thing as just having a cold, its not the same thing as just not getting a good nights sleep.
Study Limitations And Continued Research
Although not mentioned by the researchers, the study presents some limitations. Firstly, the gene variant was introduced into mice, so researchers must use caution in translating the results to humans.
Secondly, the gene was discovered mainly in one person, meaning that further testing should confirm the presence of this gene mutation in other people who have lupus.
When asked to comment on the study, honorary consultant rheumatologist with University College London Hospitals in the United Kingdom, professor Mike Ehrenstein, was optimistic about the study. He was excited about the potential treatments it could lead to.
He said, This study shows that TLR7 mutations can cause lupus or at least juvenile lupus. Often children with lupus have more severe disease and the genetic contribution may be greater than in adults.
The link between TLR7 and lupus goes back more than 15 years, and companies have inhibitors in development so hopefully, we will hear soon about their efficacy. Interestingly hydroxychloroquine, a drug commonly used to treat lupus may partly work inhibiting TLR7.
Prof. Mauri noted that research could further focus on the actions of the B-cells:
Understanding the genetic causes of lupus could also open up new treatment options for people with the disorder.
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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.
