"Ask Jessica!" Introducing a New Advice Column from Our Director of Social Services

In her first post, Jessica responds to a frequently asked question: "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?

Jill
NYC

 

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.


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Ask Jessica!
Do you have questions on how to successfully cope and manage your lupus life? Twice a month, Jessica Rowshandel, our director of social services, will post answers, advice, and feedback that you can use right away—and may select yours to feature. Send your questions to her at jrowshandel@lupusny.org or post them in the comments section below.

 

Disclaimer:

Jessica Rowshandel, MSW is the S.L.E. Lupus Foundation’s Director of Social Services. She is not a physician. The advice provided is for educational and informational purposes and the Foundation does not recommend or endorse any particular treatment or therapy. Lupus is a very individualized illness; consult a health care professional before making any decisions about your care.

 

 

Comments

Hey there. This is possibly a

Hey there. This is possibly a hijack on my part. I haven't been officially diagnosed with lupus yet. I have been diagnosed with overlap syndrome with rheumatoid arthritis and possible lupus. I think I know exactly what you mean about being so exhausted. It's like your energy level just falls through the floor and you become a virtual zombie. Actually, I was REALLY glad to find out that being so tired was a symptom. I used to wonder if I was just really lazy and in horrible shape because of it - but I should have known better. I do SO much better on my good days. As it is though, I still get irritated with myself for letting my apartment get messy and for not being able to focus as much as I would like to at work. That just isn't like how I used to be. Another thing that I wanted to add to this little discussion: keep in mind when those people who want you to try harder DO convince you to push yourself too far that you will pay for it - if not that day, then the next one and possibly longer. I am reaping the rewards of that one today, but I did it all by myself. Guilty as charged your honor *grin*. Ah well, I'm still learning my limits, but all in all, I'm dealing pretty well. This CheshireCat's smile will be the last thing to disappear. Good night all!

Limits

I do not have lupus, but I have fibromyalgia and Multiple Sclerosis. I TOTALLY get the learning your limits thing. I push too hard and pay the price. I want to do so much with/for my husband and 7yr old daughter that I push. They both understand (to a point) when the fatigue hits, but unless you experience our kind of fatigue, I don't think people really do. The Spoon Theory really really helps explain it. I have found fellow spoonies since! Good luck!!

Lupus Fatigue

I have systemic lupus & fibromyalgia. The best description for the fatigue for me is that I feel like I got run over by a Mac Truck. Everything hurts, muscles, joints, hair...& even my teeth hurt. It feels like someone unplugged my electric cord or removed my battery. It is so overwhelming & feels as though your Life Energy has been drained out. You can't think straight, or find your words to speak. Your joints & muscles are all screaming at once...just getting up to go to the bathroom is exhausting. Picking up the telephone is exhausting. Getting dressed is impossible. It is so overwhelming you often wonder if this is what it feels like to die. Fighting it only makes it worse. So, you just give in to it & hope & pray it will pass in a few days...or weeks.

sle and fibromyalgia

I fully unerstand your ordeal. I am 46 yrs old and I used to be extremely active at one time.

I also have SLE & Fibromyalgia. Yes it is very difficult for our loved ones let alone strangers to understand our extreme exhaustion.

The only thing that we SLe sufferer's have to try and do is educate our loved ones as well as many other people because unfortunately, They cannot see the inside of our bodies thus far, the typical comments such as: " Oh but you don't look sick " and my personal favorite: " Why are you so fat?"

Having said this, I right away go into my medical mode by informing these people that just because we don't look sick, does not mean that we are not at all. As far as the fat comment, I also tell people that this Illness takes it's toll on our joints, we suffer from severe tendonitis, eye conditions and vital organ conditions as well so we are taking alot of medications to prevent flares and inflammation which I call my favorite Lupie Drug, Prednisone!

Until our loved ones and friends could understand the full extent of SLE, You and I as well as thousands of our Lupus family members will have to keep taking the step of educating everyone,

Until then, when you feel exhausted, try taking hot bath soaks, along with keeping up with your meds and rest as often as you can when your body is feeling this way.

Take care and I am sure on your side always. So let us fight together ok?

Living with Lupus

I have Lupus I feel so much like how Joy explained Lupus. I was diagnosed with Lupus and Fibromyalgia in 2004 I was 40 years old. It took years of living in pain and in and out of wheel chair and running to doctors and not knowing what is wrong with me. My body is like it is ran over buy a truck and over and backed up on. It hurts to do anything I don't sleep well. I have bladder problems. I have sleep apnea. Serjyns sorry for spelling. I have OA Arthritis all over my body. I have diabetes my doctor said he belives it is because of Lupus. I caught the diabetes early thank God. I itch all the time from meds I take a lot of meds for Lupus and fibromyalgia when I dont take them then I am worse off and cannot even move my arms so I deal the best way I can. My knees are shot nothing I can do except try surgery both knees replaced. I am 46 and my body is like a 90 year old. People in there 80s walk faster then me. I am in a wheel chair again cause of my knees. Some times I ask why am I alive living like this. I have a wonderful husband who loves me and takes care of me I am younger then him I should be taking care of him.

This disease can take over any ones life for some reason the Wolf likes me. I may have Lupus but I don't own Lupus I live with Lupus but it does not own me. I am more then Lupus I am a human being, a child of God, I care and I love, and I have dreams just like you. I am no different then anyone else except I have had to learn how to live life differently then I used to. I used to dance ballet and Jazz and now I am in a wheel chair and hardly get around. Once I get my surgery on my knees I hope to be walking daily and my dream is to get on toe shoes one more time just to be able to do it again. I want to travel I want to love and share and live life to the fullest. I am no different then anyone else. You cannot catch Lupus some people seem to stay away from me as if they can catch it you cannot catch it.

I invite you to visit me at my website
http://www.angelfire.com/me5/angellady95/angelladyintro.html
it is called "Angellady's Place" I would love to hear from you. It is on Angel Fire. Also above near my name you can click on it. Life is good it is my choice how I look at it. How I react to the situations in my life I have my good days and bad days I have days I am so happy and grateful to God and some days I feel like God take me. But for the most part I want to live to the fullest and fulfill my dreams. I want to spread the message of Love, the Love of God.
We are all blessed.

Question

I wrote the above but for got to put my name and the question.
Boy Lupus and Fibromyalgia affects my memory I for get things and words,
I forget names and for get what I am doing. What can I do to help my memory with out taking medicine? Also I feel like my legs and arms are not part of me I can feel them but they are numb and my arms too. It seems to be getting worse. What do you think about it? Also I am told I have been in remission from Lupus since January 2010 so it has been a year and I seem to be feeling worse.
Thanks for being here for us.

re: Lupus

I have just been diagnosed with Lupus SLE and have been experiencing not just the fatigue, but other symptoms, pertaining to my shoulders, arms, hips, legs and feet. My neurologists said I had some minor nerve damage on my left side-just don't know what that means. Worried that this minor nerve damage is just the beginning of whats to come. I thought Lupus symptoms were come and go, but I have been suffering for months, with no relief in sight it feels. Any suggestions?

Some people don't have

Some people don't have clearly defined life threatening flares and complete remissions you read about,....some tend to be more steady and stable,....bad yes but not as bad as many. Its very scarey at first as you wonder what will happen to you next and read all the potential bad effects of the disease and treatment. However, I found that with time I matured in the disease, ....meaning as the years have gone by I've gotten tougher and more confident,....and have really reclaimed my life. I'm still just as sick, still have horrible pain and fatigue,....but I don't feel nearly so bad about it. I have accepted that I have limitations,...not gracefully, but I've accepted it. I spend my time and energy how I like,....sometimes I pay a heavy price,...but its my choice.

Good for you Lori!

Good for you Lori!