Tuesday, October 30, 2012

Lupus and Fatigue

     Fatigue is a major problem when living with lupus, it can have a major impact on one's life.  Dealing with debilitating fatigue can make the smallest of chores seem completely impossible.  Waking up feeling like you haven't slept in days is very hard physically and emotionally.  I like to explain that having lupus is like having the flu everyday, if healthy people could imagine what it would be like to live on their worst day, everyday for the rest of their lives.  Never feeling refreshed, rested or pain-free.  The pain that lupus causes the body day in and day out can also contribute to the unrelenting fatigue. Most people with SLE also have other conditions and diseases that contribute to the fatigue.  

Understanding Fatigue in Lupus - and What Can Be Done


Special Report
Roberta Horton, LCSW, ACSW
Director, Department of Social Work Programs
Hospital for Special Surgery

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.

SLE Lupus Foundation

Facing Lupus Fatigue

May/June 2007
The fatigue of lupus can’t be ignored. It’s much more than just feeling tired. It can make getting out of bed every morning seem like climbing a mountain. Ordinary tasks, like cooking dinner or doing the laundry, can seem impossible.
Fatigue is a symptom that others can’t see, which means they may not understand how bad you feel. Even worse, you may feel like no matter how much rest you do get, the fatigue will never go away.
If you have this kind of fatigue, talk to your doctor to find out if there is an exact cause, and if it can be treated. What you eat, your exercise routine, and your ability to cope with stress are all things that can worsen—or reduce—fatigue.
With lupus, medical conditions such as chronic inflammation, anemia (a blood disorder), and certain medicines often make fatigue even worse.
Your nurse or doctor will suggest ways to better manage fatigue. And here are a few extra tips from us. Call us if you have any questions.
Get Rest
Sleep is crucial for a person with lupus. Aim for 10 hours a night, and see if you feel better. A 15-minute nap during the day can also help, but longer naps may make you feel sluggish when you wake up, and can make it harder to fall asleep at night.
It seems like the opposite would be true, but exercise that gets your muscles moving and makes you sweaty can actually lessen fatigue. Studies show that people with lupus who exercise often feel more energetic as well as more hopeful and happy about life. Stronger muscles and bones are an added benefit.
Work Can Work For You
If you are used to working long hours, or getting up early for work, you may need to change your schedule. Fatigue can be worse at the beginning and end of the day, so think about working part-time, or coming in later and leaving later in the day. If possible, mix mini-breaks in to your work day rather than taking one long lunch hour.
Easier at Home
Talk to your spouse, children, or roommate about sharing chores around the house in ways that split things fairly, but give you the jobs that don’t add to your fatigue.
Pace Yourself
At the start of each week, make a schedule to be sure you’ll have a balance of rest and activity. Each morning, go over what you have to do for the day. If you think you’ll be too tired, try to reschedule. It’s better to be rested and enjoy your time out, rather than over doing it and feeling worse.
Stress makes it even harder for your body to heal itself. Stress-relievers such as massage, yoga, and acupuncture can reduce fatigue in some people with lupus.
Reach Out
Feeling alone or depressed can make lupus fatigue even worse. Reach out to your friends or spouse. Studies have shown that people with lupus that communicate well with their spouse, and feel in control and good about themselves, are less likely to feel fatigued. If you’d like help in finding new ways to talk to your spouse or friends and family, call the Cooperatives. An outreach coordinator can help you in many ways.

"How can I explain lupus fatigue to my family and friends?"

Dear Jessica,

I need help explaining what lupus fatigue feels like to my family and friends. Sometimes they think I’m just being lazy. Do you have any suggestions?


Dear Jill,
So many of our patients have fatigue, and like you, they say that since they don’t usually look sick, it’s hard for friends and family members to really “get” just how wiped out they are.
To make matters worse, lupus fatigue is not only unpredictable but can be maddeningly hard to describe. Some people think of fatigue as simple tiredness, when that’s not it at all, as you know. How many times have you heard, “Just push yourself a little harder?”
When I ask our patients to explain what lupus fatigue feels like, they make comparisons. “Fatigue feels like a heavy stack of metal sheets sitting on my chest –-hundreds of pounds worth,” said a young woman at a recent support group. For her, fatigue is an extremely heavy force that she cannot move, no matter how hard she tries.
Others say that the fatigue of lupus feels like they have been drained of all energy…as if something vital is suddenly missing. All the light bulbs inside have burned out at once. A bundle of balloons has popped, and suddenly fallen to the ground. “I feel limp like a rag doll or a puppet whose strings have been cut,” one support group participant said.
There is one way of describing lupus fatigue that I often share because it’s so visually clear and concrete. It’s called the Spoon Theory, and it explains how a person with lupus fatigue must be choosy about what he or she does since on some days, there are very few rations of energy (spoons) to go around. Read the theory here. You might want to consider trying it the next time you are telling a friend how you feel.
Regardless of how you may describe your fatigue, one thing remains constant: it’s not about lack of effort. “No matter how hard I try, I just cannot get out of bed, and I really want to,” is something I often hear. It’s an important thing to note. You are definitely not being lazy.
Do you have ways of describing fatigue, or “comparisons,” that you think others might like to hear about? Tell us about them in the comments section below.

The Spoon Theory video by Christine Miserandino
Written Spoon Theory by Christine Miseradino
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
Cartoon image of Christine Miserandino holding a spoon
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
© Christine Miserandino
*We have English, Spanish, French and Hebrew translations of “The Spoon Theory” available.

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