Summary of a presentation at the Living with RA Workshop at HSS
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.
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.
About the Living with RA Workshop at HSS
Reviewed and Updated: 11/10/2009 00:00:00
Summary written by Diana Benzaia.
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