Lupus and Fatigue
Defining Fatigue
Fatigue is an integral aspect of living with lupus. Dr. Berman asked the group to define what fatigue means in their lives. A member said, "No matter how much I rest, I still feel tired. Even if I had a wonderful night's sleep."
"That is the perfect description of what fatigue means for those living with lupus," Dr. Berman told the group. While healthy people will come home from work after a hard day and be fatigued, she explained, after they sleep and rest, they are refreshed. That isn't the case for people living with lupus. For people who don't deal with lupus every day, "The best way for them to understand what fatigue and lupus is like is by saying its like dealing with the flu." Dr. Berman added. "Nothing you can do seems to make the fatigue any better. Also, over time the more and more you experience fatigue, the more chronic it becomes.
Dr. Berman defined fatigue as "an overwhelming, sustained sense of exhaustion and decreased capacity for mental and physical work." This is in contrast to chronic fatigue, which is defined as "unpleasant, unusual, abnormal or excessive whole-body tiredness, disproportionate to or unrelated to activity or exertion and present for one month." As a person living with lupus, you may experience fatigue from a slight exertion, such as showering or making breakfast. That is what distinguishes the fatigue someone living with lupus experiences from other people.
Fatigue is very a very common complaint among those living with lupus. Dr. Berman said 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.
Other Causes of Fatigue
Dr. Berman said there are many contributing causes of fatigue. She encouraged the group to think about lupus as an umbrella for your fatigue and think about other medical issues that may cause it, as well as social and emotional issues. Unfortunately, among doctors who do not specialize in lupus, there may be a tendency to blame everything on lupus itself. Dr. Berman said that can be dangerous, and described some other conditions to speak to your doctor about.
- Thyroid Problems: Issues with your thyroid can usually be attributed to an autoimmune problem; most doctors are good at measuring thyroid problems and addressing them.
- Stress: Dr. Berman said that doctors should really be asking their patients about stress as well. While she doesn't believe stress causes a disease, she believes it certainly doesn't help. Stress is usually something you can modify, so speaking to your doctor about your stress level may be a good first step.
- Depression: Being depressed definitely makes you feel tired and it can be a difficult cycle to break.
- Keeping a Routine: Dr. Berman said that even just the act of having a routine could cause fatigue, even among those who are healthy. She sometimes tells her patients that they are taking on too much and they need to modify their routine. She will suggest to her patients that out of a list of five things, cross off two immediately so that they can realistically manage it.
- Diet: Some people with lupus struggle with gastrointestinal issues and may be on restrictive diets. If you aren't getting the right amount of calories, or aren't able to digest the right amount of calories, you can become very worn down and this can impact your fatigue levels.
- Inflammation: Any time your body is experiencing excess inflammation, such as a fever, rash, joint pain, or muscle pain, you will feel more tired.
- Anemia: Anemia occurs when your red blood cell count gets low. This means that the amount of oxygen you carry will decrease, which will increase your level of fatigue.
- Infections: Since people living with lupus are sometimes on medications that suppress the immune system, they may be more likely to get infections. When infections happen, you are likely to be more fatigued.
- Insomnia: Not sleeping well is a cause of fatigue. You might not be sleeping well for a variety of reasons, including side effects from medications.
- Sleep apnea: This is a problem with not being able to get enough oxygen while you sleep. This means that you are not sleeping well, which can contribute to fatigue.
- Low Vitamin D Levels: Vitamin D is an important vitamin that your body gets in many ways, including from the sun. Low levels of vitamin D can cause fatigue.
Medications can cause or contribute to fatigue as well. Dr. Berman stressed that every person is different and therefore will experience medications differently. If you are doing well on your current medications, then there is no reason to believe you will not do well in the future. Below is a list of medications that may contribute to fatigue.
- Cold and Allergy Medication. While some people can get "hyper" from these medications, a lot of people feel very sleepy on them. If you need to take them to deal with allergy season, be aware these medications can contribute to your fatigue.
- Muscle Relaxants. Sometimes you may need to take muscle relaxants, but they can make you feel quite tired. Dr. Berman usually recommends to her patients that they take them at night so they don't interrupt your sleep cycle and you get the medication benefit. She stressed that you should speak to your doctor individually about that first.
- Blood Pressure Medications. While rare, these medications can have an impact on your fatigue.
- Anti-depressants. Medications such as Paxil, Prozac, Zoloft, and Cymbalta can contribute to feelings of fatigue in some people.
- Pain medications. This is the class of medication that Dr. Berman said she thinks most often contributes to feelings of fatigue, particularly narcotic pain medications.
- Prednisone. Many people living with lupus take prednisone regularly. It can act as a stimulant, causing insomnia and problems getting a necessary amount of sleep. Sometimes it may be wise to talk to your doctor about changing the dosage of it, or changing the time of day you take it.
Working with Your Doctor to Better Understand Fatigue
While fatigue is a common experience, Dr. Berman believes both patients and health care 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 issues seem to take priority during each appointment. She asked the group to think about questions they would like their doctor to ask them in order to better understand their fatigue. She then shared some of the questions she asks her patients.
- Did you get good nights sleep? Dr. Berman said this is a great question to ask because sleep is so important to fatigue. If you aren't getting good night's sleep, your doctor should be aware of this so they can monitor you. It is also important to keep in mind that certain medications may cause sleeping difficulties.
- How many hours after you get up are you working productively before you get hit with a wall of fatigue? This question can help you and your doctor track changes in your fatigue level over time. If at some point you used to be able to accomplish six hours of productivity, and currently you are only able to work for two hours, this can signal to you and your doctor that there may be some underlying issues.
- Is there something you aren't able to do that you would want to do (within the realistic limitations of your illness)? This is an important question because it helps your doctor know what your limitations are, and therefore can help direct the doctor in managing your fatigue.
- What are your daily activities? These questions help gauge how much energy you exert on a daily basis.
- How often do you feel fatigued? This question helps your doctor get a sense of what kinds of things might influence your fatigue. If you become fatigued for a week after vacuuming, that helps your doctor understand the impact of your fatigue.
- What are the consequences of your fatigue? If you are no longer able to engage in certain activities, or you are suffering emotionally as a result, this is important for your doctor to know.
- How do you cope with your fatigue? This is really important; your doctor wants to know what kinds of things you do to help manage your fatigue, and if you are able to rely on other people for help with it. If you are lacking a support system, your doctor may be able to offer you some support.
- Can you tell your doctor how bad your fatigue is? It is important to get a sense of how the fatigue feels to the patient, so doctors might want you to identify a number from 1-10 indicating how bad it is. Dr. Berman admits that there are no perfect tools to measure fatigue, but she likes to use a Visual Analog Scale that is used in other areas by rheumatologists (such as measuring joint pain) when assessing fatigue with her patients.
Dr. Berman says it's important to help your doctor prioritize during your visits. She suggests writing down your top one or two issues you want to talk to your doctor about and bring it up in the beginning 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 (or the amount used or time of day it's taken). 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. Again, talk to your doctor about your individual case of lupus and fatigue.
What You Can Do to Manage Your Fatigue
In addition to working with your doctor, there are things you can do on your own to help beat fatigue. Many of these techniques deal with managing your own expectations of what you should be able to do.
Dr. Berman stressed that you need to be kind to yourself while dealing with fatigue and that fatigue does not mean you are lazy! For example, when it comes to your to-do list and your housekeeping, allow yourself to cut down the list without guilt. Have your groceries delivered. Though this is more expensive, Dr. Berman said to try to think of it as putting money in your "energy bank." If having the groceries delivered can help you get through the day with your fatigue, it might be worth it.
You should also ensure you are following a balanced diet. Protein serves as long acting energy, while carbohydrates offer short-term energy. The foods that you eat can have a lot of impact on your body functioning, and the right diet can help with your fatigue. But again, everyone is different, and if you have lupus nephritis, some diets might not be appropriate for you, so talk to your doctor if you would like to try a new one.
It is very important to follow your body's clues for rest. If you need to take a nap during the middle of the day, then do it. By listening to your body, you will feel better and hopefully have more energy.
Cognitive behavioral therapy has been shown to be effective for managing fatigue. This is a therapy based upon the way you think about things - that the beliefs you have about things impact your behavior. The therapy aims to understand the impact of what may be some of "irrational" thoughts. For example, you might think that by not cleaning your house, you are a bad person. The therapy will work towards understanding what your beliefs are and then try to offer alternative thoughts that may improve your attitude, feelings, and emotional states.
Dr. Berman also stressed the importance of exercise. She said she understands that when people living with lupus are feeling really fatigued, they might not
feel like exercising is possible, but even just a little exercise will produce more energy. The key is that you have to have different expectations for yourself. For the exercise to be effective, it doesn't have to be strenuous. For people living with lupus, the idea is to maintain a low level of activity. This will improve your lung capacity. Exercising also has implications for reducing pain because of its release of endorphins.
For those living with lupus and suffering from inflammation, physical therapists emphasis the importance of stretching to improve the range of motion in your joints. Once you are at a certain level in your fitness, you can progress to strengthening your muscles. This can be done with light dumb-bells, or sometimes even household items like soup cans. The point is not to overexert your capability. For cardiovascular workouts, it is important to engage in low-intensity exercise, as it is less harmful to the joints. Waking on the treadmill is ideal. If working with a physical therapist is of interest to you, talk to your doctor. They can recommend a physical therapist that can design a program for you to exercise safely and effectively.
If you are still working outside your home, managing fatigue in the work place is important. Dr. Berman suggests taking frequent breaks. Sitting for long periods of time causes us to feel stiff, so getting up to stretch will help with stiffness by getting oxygen flowing to other parts of your body. Also, Dr. Berman suggested talking to your bosses and your human resources department to see if there are any accommodations that can be made for you to increase your effectiveness at work, such as ergonomic chairs, changes to your computer screen, and possibly adjusting your hours to start later in the day a few days a week.
Conclusion
Dr. Berman closed her talk by saying again that one of the best ways to manage fatigue is to be kind to yourself as you deal with it.
One of the hardest things she thinks her patients living with lupus face is that they really want healthy people to understand what they are going through. Unfortunately, the truth is that healthy people are never going to understand what your fatigue feels like, and that is okay. Dr. Berman stressed that just because others don't understand, it doesn't mean that what you are experiencing isn't valid.
Allowing yourself to have different expectations is important, and reminding yourself of that is one of the best tools in your toolbox to effectively deal with fatigue.
If you have lupus, you probably know how bad fatigue can be. It's one of the most common symptoms reported by people with lupus. Most lupus patients suffer with it. But exactly what causes this fatigue that goes far beyond just being tired?
A study done at Hospital for Special Surgery some years ago suggested that depression and sleep problems might contribute to fatigue in people with lupus.[1] But in the women studied, those who had lupus did not have more depression than those who did not. However, those who had lupus took longer to fall asleep - and slept for longer periods of time.
Over the years, other researchers have also tried to figure out how sleep and depression might play a role. Others have suggested that lack of exercise might be involved - because exercise can actually give you energy when your muscles get fit.
New Research
A Canadian group of researchers explored the question and reported at a meeting of the American College of Rheumatology.[2] They studied 100 women with lupus. The women were given a series of different tests to look at:
- the type of their fatigue,
- how bad their fatigue was,
- how bad their pain was,
- whether they were depressed - and if so how badly,
- how well - or poorly - they slept,
- how much physical activity they did in their leisure time,
- whether they were satisfied with the support they received from family and friends.
Finally, the women were examined by a doctor to see the level of their lupus disease activity and the impact lupus already had on their bodies.
What They Learned
As in other studies, they found that people with lupus have much more fatigue than others.
Fatigue can be influenced by everything they explored and more: depression, pain, quality of sleep, quantity of sleep, exercise, severity of illness, and satisfaction with your social support network - as well as flares, medications, and stress. And it varies from one patient to the next.
Because fatigue arises from so many different factors, they said treatment should try to find out what factors were involved in the patient being treated - and treat all of them to get at the fatigue. These factors can be treated - modified - changed.
Two Types of Fatigue
One thing that was different about their study was that they separated physical fatigue from mental fatigue. Many other studies have just looked at "fatigue" as one thing.
Think of physical fatigue as "I'm too tired to stand up," or "I just can't walk another block." That's easy to recognize - and you should listen to it. Rest. Sit down or just collapse in bed for awhile.
Mental fatigue can be more difficult to get a grasp on sometimes. "I can't think straight" or "I can't concentrate" or "I keep rereading this paragraph again and again" may be mental fatigue. Or it may be a sign of the cognitive (thinking) difficulties that are part of neuropsychiatric lupus. So any changes in your thinking or concentration should be reported to your doctor - because a change in medication may help. In the meantime, again, rest. Put the book down. Veg out in front of the TV. Cuddle up with your pet. (Studies have proven that stroking a pet can be very relaxing.) Or take a nap.
Physical Fatigue
It was not a surprise that people with more pain and poorer sleep were more likely to have physical fatigue.
Lots of research - in people without lupus - has shown exercise helps reduce depression. But this study had an interesting surprise. Only the lupus-fatigued women who did not score high on depression tests seemed to be helped by exercise. Lupus-fatigued women who were depressed did not get an improvement in physical fatigue from exercise. Does this mean you shouldn't exercise? No! You need exercise for heart fitness, muscle strength and to keep up your energy. It may even help your physical fatigue - because a finding from one research study doesn't apply to everyone.
But look to other means as well. Talk with your doctor about ways to improve your sleep and lower your pain level, especially by reducing your disease activity.
Mental Fatigue
The factors most related to mental fatigue were slightly different. They were clearly:
- greater pain severity - again, talk with your doctor about how to reduce your pain level;
- higher levels of depression - ask your doctor about referral to a licensed psychotherapist such as a social worker or psychologist. In some cases,r antidepressant medication may also be useful.
- lower satisfaction with social support networks - talk with family and friends about what you need from them. Often they may not be aware of how you are feeling inside. Let them know what can help. Establishing an understanding together of the impact of fatigue and how to problem-solve around this is important.
How Do You Cope
Fatigue is profound. It touches you to the core. It can totally disrupt your life. Fatigue itself can be stressful and fatiguing. Because you cannot "see" fatigue, and it can change so much from hour-to-hour and day-to-day, your fatigue can also be confusing to those with whom you live and work. But it's not something you can point to like a swollen joint or a rash. You can be exhausted with fatigue and your friend or family member says, "You look great."
This can be very frustrating. You feel that others just don't get it. Over time, see if you can learn to respond comfortably and assertively to such comments. "I wish I felt as great as I look - but I'm really fatigued right now, and it's important that I rest and take care of myself."
Those words may not be right for you - but you need to find the words that are. Because when fatigue hits, you need to let go and rest. Give in to fatigue when necessary - so you can spring back. Take that temporary break - so you can stand up and think clearly later. Whether it's an hour later or a day later doesn't matter. You will find the right moment. And only you can. Because lupus fatigue is different for everyone - what causes it, when it hits, what helps, when it goes.
Be kind to yourself, work with your doctor, and you will find the path that's best for you. Just don't give up.
Note: Although this talk was presented in a workshop on rheumatoid arthritis, its message applies to people with many types of systemic rheumatic disease, including lupus (SLE), fibromyalgia, scleroderma, and others.
Overwhelming fatigue….just the phrase itself sends sufferers of autoimmune disorders into a chorus of affirmative head nods. Whether the fatigue stems from Lupus, MS, Rheumatoid Arthritis, Fibromyalgia or Chronic Fatigue Syndrome itself, the debilitating feeling of completely “running out of steam” is universal. Just like every person is an individual, no case of autoimmune fatigue is the same. Some people experience long periods of incapacitating fatigue while some even endure months of it. The key is to be familiar with your body and work with it. For instance, on the days that you are symptom free, you can schedule more activities and on those days where you have unrelenting symptoms, you can plan fewer activities. Feeling tired all the time can lead to stress and depression so it is vitally important that you plan your coping skills in advance. Here are a few tips to help you through those days.
Keep a journal of your symptoms
On the first sign of autoimmune fatigue, take careful note of what you did previously. For instance, were you under a bit more stress than usual, did you eat differently or forget to take your medication? By diligently maintaining your journal, you may be able to recognize a pattern. Note the times of day when you feel fatigued and speculations on what triggered it.
Get a good night’s sleep
This is easier said than done in a Spoonie’s day to day life. When you have an autoimmune disorder, pain may keep you from falling asleep easily, or it may awaken you during the night. Disrupted sleep inevitably results in day fatigue. Try to develop a nighttime routine and not deviate from it.
Prioritize your time and energy
There may be times when you feel more fatigued than others, and you will have to deal with limitations to your energy. Your energy is a commodity that you must protect and sometimes ration out. This may involve saying no to lower-priority activities that take up too much of your energy. When you’re feeling exhausted, foregoing some activities is necessary to get the rest you need.
Ask for help
Asking for help may be difficult at first, because autoimmune disorders are not always visible, you may be afraid that co-workers and friends will perceive you as lazy. It is very important to recognize that asking for help actually benefits everyone. Allowing someone to assist you in completing an activity may yield more time to spend with loved ones.
RA Fatigue
Most people think of arthritis as just pain, stiffness, and achiness in one or more joints and having difficulty with activity related to those joints, because that's what osteoarthritis (the most common type of arthritis) is all about. It's a localized condition in the joints.
But there are more than 100 different forms of arthritis, and rheumatoid arthritis (RA) is the most common form of systemic arthritis. Systemic means it's not localized but affects your entire body. Although the most common symptoms of RA are joint pain, swelling, stiffness, warmth, and redness, there are many other things going on in the body that cause you not to feel well - and to suffer with fatigue.
What is fatigue in rheumatoid arthritis?
It's easier for people to think of joints as causing problems than to think of fatigue and the other intangible things that give RA patients trouble. That's because fatigue is not something you can put your finger on. It's a sense that you're not feeling up to par, that you're slowing down. Nothing else may be wrong that's obvious to you or your physician. You may or may not have joint pain or stiffness at that moment. But the fatigue is there.
Patients sometimes compare the fatigue of RA to recuperating from the flu - as if they're trying to keep up and can't do it. But that's not quite all of it. There's something more that's hard to define. The fatigue of having a systemic rheumatic disease is unique and can be very difficult for patients and those around them.
When people ask, "How are you?" and you say, "I'm fatigued," they ask, "What do you mean?" Well, it's not just being tired or feeling that you want to sit still. It's something deep inside that's slowing you down - maybe slowing your thinking or initiative. It's something telling you that you don't feel quite right.
Can RA fatigue be measured?
So far, no. It's an intangible symptom that, despite great effort, physicians have been unable to define nor directly measure. But we can indirectly measure it by its impact on daily activities and state of mind, which varies from patient to patient - and changes for any one patient over time. But enough people have complained about fatigue over time that we know - and you know - it's real and its impact is profound.
Why might RA patients have this fatigue?
Consider the rheumatoid factor and other antibodies found in people with RA. Those are not just found in joints. They are found in blood throughout your body. That's an indicator that something is awry throughout the body.
Why is fatigue so difficult to cope with?
It might be easier to have a disabling condition that happens and then is stable; it stays the same, and you develop coping mechanisms to deal with it because you know what to expect and people around you know what to expect.
But that's not the way RA works. Big fluctuations occur randomly. One day you feel fantastic and can do everything you and others expect of you. The next day you can't even get out of bed. And every time that happens, you have to reestablish your coping mechanisms - both functional (who will prepare the meals, take care of the family, etc.) and psychological (how do I get through this with my feelings intact).
It's often easier to get through those fluctuations when you can pinpoint the problem - "These knees are swollen and painful" - than when the problem is as intangible as fatigue, which can occur in the absence of physical symptoms. Fatigue can be "hard to believe," especially when you've been feeling so well just before it hits. So, all too often, because you can't "see" it, you belittle fatigue. "Is it that I did too much yesterday or didn't get enough sleep last night, or is it my disease acting up again? And if it is my disease, do I really want to acknowledge that? Can I ignore it, push it aside and just keep going?" And that's exactly what you sometimes do - push it aside in order to feel like the person you were before you got this disease. Acknowledging the fatigue, and responding to this intangible sign of disease, is difficult - but essential.
How can you master fatigue?
The key to living successfully with the fatigue of RA is developing strategies - physical/functional coping strategies, as well as psychological coping strategies.
- You have to acknowledge that fatigue exists and that it's something you can't necessarily control or predict. If you have to take time off just to feel better, that's okay - because anyone else experiencing this type of disease would expect to be allowed to do the same thing. So you have to allow yourself to feel this way. There's nothing wrong with saying that fatigue is having an impact on you - that even though you are not in pain, your disease is still dragging you down and you're not feeling well.
- You have to acknowledge that fatigue won't necessarily be easily understood by people around you, because you don't have obvious physical symptoms. When it's "just" fatigue, it's tough for others to understand, and you may not even want to tell them. You may fear that they will think you're lazy because they don't see anything wrong with you. You have to be prepared for responses like, "I'm tired too." And you need to think about and decide what your own level of comfort is in responding to such comments - whether or not you want to share with them the details of your systemic disease and why your fatigue is so different from their tiredness.
- You have to remember that fatigue creates a feedback loop: when you're fatigued and can't keep up, you may get frustrated and angry, especially if you don't acknowledge your fatigue. So people around you may respond both to your physical slowness and - or - your emotional reactions to your fatigue. That's one of the ways your fatigue may cause problems with social and work relationships. And those problems may include very close family members who supposedly know what RA is and what it means. Indeed, conflicts may be more apt to arise when you don't give in to fatigue and admit that you don't feel well. So it may be better to be open with yourself and those around you and simply say, "I have to bow out of this social engagement" or "I can only stay for a limited period of time" because "It's important that I rest and take care of myself."
- You have to learn to find balance and compromise, which may lead to opportunities you had not considered. The art of mastery for living with a chronic disease is compromise. But it's important to remember that you are not alone in that, although your challenges are greater. Life involves compromise for everyone. Fatigue is one of the many things that you have to allow for as we seek balance, whether that's with work, school, or social relationships. Here are some important ways we can find balance and compromise.
- Adapt to your situation with appropriate changes. If fatigue is having too much of an impact on our work, we may have to change jobs or take time off. But if it's what you really want to do, you can often find ways around it. I've never met anyone who would say that the life they are living is the one they might have envisioned for themselves 10 or 20 years ago. If your RA is such that you can no longer figure skate, well, you can find new interests. There are always ways to adapt. Remember the old saying about "When life gives you lemons, make lemonade." Sometimes fatigue can even bring rewards when you search out new opportunities and learn to find joy in new things that you would have not have considered doing in the absence of RA - whether that's in your career or in hobbies.
- Give in to fatigue when necessary - so you can spring back. The only way you're going to be able to work and continue to be a productive member of society is to give in to fatigue. By giving in, I don't mean giving in to the disease. I mean periodically giving in to the fatigue - to rest and do whatever is necessary so that you can improve as quickly as possible and get back to your life and doing the other things that you enjoy. That's part of finding the balance, because one aspect of dealing with fatigue is maintaining your normal lifestyle in between the periods when you have fatigue.
- Work with your doctor to assure balance in medication benefits and side effects. Some of the medications you take (especially steroids) can cause a host of side effects, and fatigue is one of them. So both the disease and your drugs can affect your lives. It's important to maximize the benefits of your medications while minimizing their side effects. That's why, for example, folic acid is often prescribed for people taking methotrexate. This is a juggling act that you have to work out with your physician.
- Get enough sleep. Sleep disorders are very common among people with RA and other systemic rheumatic diseases, such as lupus. Often, sleep problems are due to discomfort or to medications such as steroids. Sometimes taking a drug to help induce sleep will improve fatigue and your overall sense of well-being.
- Get help with depression. Are you depressed because you feel fatigued, or are you fatigued because you feel depressed? Or is it the whole gestalt of living with this unpredictable disease and the adjustments it requires? Don't get caught in this catch-22. Discuss it with your doctor. Sometimes, a low-dose antidepressant, given at night, can help sleep, ease the discomfort of fibromyalgia-like symptoms, break the vicious cycle, and have a positive impact on your sense of well-being.
- Exercise is essential. Keeping your muscles conditioned makes every activity easier and less tiring. And the endorphins generated by vigorous exercise - even brisk walking or, even better, exercise with light weights - can help reduce fatigue. Even when you feel awful, go through range of motion exercises every day. Don't do impact exercise when joints are inflamed, but continue with range of motion exercise. You can even do exercise while sitting in a chair. Exercise is something proactive that you can do without someone else's help - to help yourself feel better physically and psychologically.
- Set up your home to make life easy for you. Start in the kitchen, keeping everything your use often within easy reach. Then do the same in your bathroom and bedroom. This may require major reorganizing. Don't set up for when you feel good; set up for the difficult times.
- Establish a work schedule that works for you. If you have morning stiffness, maybe it's better to start work later. You don't have to be like everybody else because there's no such thing as "everybody else" anymore. With computers and faxes, you can have a full-time job at home and only go to the office for special meetings. Today, you can tailor your work to your life - and you won't be alone in doing it.
- When traveling, plan ahead and anticipate. Travel can be tiring for anyone; when you have RA, it can be worse. If you're crossing time zones, ask your doctor and plan how you will have to change your medication schedule. Take a pillow for your neck to avoid stiffness. Know what little things will make it easier for you, whether that's a cold pack or a hot pack to toss in the airplane's microwave, so your RA won't have as much of an impact on you when you get to your destination.
- Budget energy wisely. Guard energy.
- Have a regular schedule. Or go to bed early.
- Do gentle modified stretching or yoga.
- Nutritious balanced snack such as protein bar and fruit.
- Get the best sleep at night possible.
- Get the best bed possible.
- Use heat to fight fatiguing pain.
- Eat on a regular schedule.
- Eat enough protein.
- Take small naps.
- Go until you collapse.
- Relaxation or meditation techniques.
My RA fatigue fighting favorite tips:
- Alternate periods of activity and rest.
- Check for deficiencies such as iron or vitamin B-12.
- Treat the disease as aggressively as possible.
- While resting, plan for what you’ll do when you are more able.
- Fruit juice & sympathy.
- Check for side effects of medicines. Take them at the best time of day to avoid fatigue.
- Accept the reality that the list will not be accomplished today.
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