Thanks to the blog “Purple Thoughts” for this entry. I have read it before and it is well worth printing here. Hope it educates and explains it better than I can.
THE TOXIC FATIGUE OF LUPUS
BY GLORIA ROSENTHAL
Almost all lupus patients have heard the phrase “But you don’t look sick” and we cringe inside, knowing the speaker’s words do not convey the speaker’s true meaning: “You can’t be so sick if you look so well”.
The fatigue that comes with lupus elicits the same reaction. Try to explain the feeling to a friend and the response is often “I get tired, too”. I want to pounce on those words and say “tired? You get tired? I want to screech that the fatigue that comes with lupus is as unrelated to a “tired” feeling as a hang nail is to a broken arm. Calling toxic fatigue a tired feeling is like saying a major flood is a minor trickle of water.
So let’s talk, first about what lupus fatigue is NOT. It is not a tired feeling. It’s not a “want to take a nap” feeling. It’s not a “lazy day, think I’ll take it easy” feeling. It’s not a “wish I didn’t have to do this” feeling. What it is: is a full-body exhaustion that makes you feel as if you have no bones, that if you didn’t have skin wrapped around your body, you would melt down into nothingness like the Wicked Witch of the West. Or that you are a melting candle, except a candle has a wick and there is nothing in your body that feels that solid. On the other hand, your bones can feel so heavy that lifting your arms to wash your hair in the shower is a chore akin to a weightlifter hefting a 200 pound barbell. His task is easier, though, because as soon as he puts the barbell down, he’s through. But after you’ve soaped your hair, you have to rinse it. That means those bone-weary, heavy arms must be raised again and after the shower, these “barbells” must be toted around all day long for they cannot be discarded like the weight-lifters toys.
Eating too, is an exhausting habit, especially restaurant dining. There must be something in the atmosphere and a three course meal that makes the lupus body say. “Hey hold on there, why are you lifting a fork so many times?” or “You broke off one piece of roll and now you want to exert that physical activity again for another piece?”
Am I exaggerating? Of course, but just enough to get a point across, a point that the fatigue that accompanies lupus is not like any other feeling. It is indescribable, but I know that as these words are read by my fellow lupoids, heads will bob up and down in instant recognition, though that frantic activity (head bobbing) will create yet another bout of exhaustion.
How do I handle this extreme exhaustion? If I’m home, I get into bed when it hits though the toxic feeling that accompanies the fatigue makes me think that once I do that, I will never be able to get up again. However, experience tells me I will come out of it and will feel better when I do. I never refer to this melting away as a nap; it’s my afternoon “coma” and my husband tells me it is almost impossible to wake me. If he must do so, it some times takes ten minutes of gentle shaking (and maybe one minute of bulldozing tactics).
If I’m not at home when it hits, and I push through it from sheer will, it will be with me for the rest of the day. Even if I give in to it later, even if I crawl into bed after it has been with me for hours, I will not shake it. Years of dealing with it has taught me why this is so: the fatigue that comes with lupus hits hard and wants to be pampered but it knows, better than I do, just how much coddling it needs. If I bow to it, I’ll revive. If I don’t, the fatigue shakes its finger in my face and says “Okay kid, you asked for it; now it’s the rest of the day for you”. And so for the rest of that day, I am that wicked witch, that melting candle, that weightlifter. I try to work around it. I tell my good friends they have to pick up for lunch out. If I drive to them in the morning, later, with fatigue as my passenger, I will have a foot that’s too weak to depress a brake and arms not strong enough to turn a wheel. Some people understand, some never will. Perhaps this will help the ordinary fatigued person see that there is nothing ordinary about lupus exhaustion. I’m glad I’m finished here, because my body is warning me that a bout is coming and I’d better be going. My bed looks inviting and my fatigue will thank me for “putting it there” by giving me a few good hours later on.
Reprinted from News & Views Number 45 – March 1995 Lupus UK.
European Lupus Erythematosus Federation
For a print friendly version click here THE TOXIC FATIGUE OF LUPUS
This information is from the following webpage: http://kidney.niddk.nih.gov and discusses the basics of kidney involvement and lupus. It is informational and just shows the basics. If you have questions, please discuss them with your doctor.
What is lupus nephritis?
The causes of SLE are unknown. Many factors may play a role, including
- gender—SLE is more common in women than men
- heredity—a gene passed down by a parent
- environmental causes
What are the symptoms of lupus nephritis?
Lupus nephritis may cause weight gain, high blood pressure, dark urine, or swelling around the eyes, legs, ankles, or fingers. However, some people with SLE have no overt symptoms of kidney disease, which must be diagnosed by blood and urine tests.
How is lupus nephritis diagnosed?
Diagnosis may require urine and blood tests as well as a kidney biopsy.
- Urine test: Blood or protein in the urine is a sign of kidney damage.
- Blood test: The kidneys remove waste materials like creatinine and urea from the blood. If the blood contains high levels of these substances, kidney function is declining. Your doctor should estimate your glomerular filtration rate based on your creatinine score.
- Kidney biopsy: A biopsy is a procedure to obtain a tissue sample for examination with a microscope. To obtain a sample of your kidney tissue, your doctor will insert a long needle through the skin. Examining the tissue with a microscope can confirm the diagnosis of lupus nephritis and help to determine how far the disease has progressed.
How is lupus nephritis treated?
Treatment depends on the symptoms and test results. Medicines called corticosteroids can decrease swelling and inflammation by suppressing the immune system. Additional immunosuppressive drugs related to cancer and drugs used to prevent rejection of organ transplants may also be used. In severe cases, your doctor may prescribe cyclophosphamide (Cytoxan, Neosar) or mycophenolate (CellCept). Newer experimental treatments include a drug called rituximab (Rituxan).
You may need one or more medicines to control your blood pressure.
You may need to limit protein, sodium, and potassium in your diet.
The U.S. Government does not endorse or favor any specific commercial product or company. Trade, proprietary, or company names appearing in this document are used only because they are considered necessary in the context of the information provided. If a product is not mentioned, the omission does not mean or imply that the product is unsatisfactory.
For More Information
Lupus nephritis is also classified as a glomerular disease. For more information, see the National Kidney and Urologic Diseases Information Clearinghouse publication Glomerular Diseases.
The National Institute of Arthritis and Musculoskeletal and Skin Diseases has online publications about Systemic Lupus Erythematosus and The Many Shades of Lupus (easy-to-read).
More information is also available from
National Institute of Arthritis and Musculoskeletal and Skin Diseases
National Institutes of Health
1 AMS Circle
Bethesda, MD 20892–3675
Phone: 1–877–22–NIAMS (226–4267) or 301–495–4484
This publication may contain information about medications. When prepared, this publication included the most current information available. For updates or for questions about any medications, contact the U.S. Food and Drug Administration toll-free at 1–888–INFO–FDA (1–888–463–6332) or visit www.fda.gov. Consult your doctor for more information.
National Kidney and Urologic Diseases Information Clearinghouse
The National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) is a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the National Institutes of Health of the U.S. Department of Health and Human Services. Established in 1987, the Clearinghouse provides information about diseases of the kidneys and urologic system to people with kidney and urologic disorders and to their families, health care professionals, and the public. The NKUDIC answers inquiries, develops and distributes publications, and works closely with professional and patient organizations and Government agencies to coordinate resources about kidney and urologic diseases.
Publications produced by the Clearinghouse are carefully reviewed by both NIDDK scientists and outside experts.
This publication is not copyrighted. The Clearinghouse encourages users of this publication to duplicate and distribute as many copies as desired.
I got my first issue of the “Lupus Now” magazine today in the mail and read it cover to cover. It was a great read all the way through! I found an interesting tidbit that I can relate to most days. It says in the magazine that lupies are more prone to being unsteady on their feet and are rather clutzy because of this instability. Wow! They know me!
Not long after reading this magazine, I found myself at a park with six of my grands. My daughter, who is an accomplished photographer (family only for now) was taking pics of them in various places and poses, individually and together. She yelled at me to come over to this tree she was working near with all six of the kids when I found myself literally tripping over nothing and falling hard to the ground.
Needless to say, I am bruised tonight. It could have been worse, much worse. You see I have osteoporosis in my spine from the years of long term high dose steroid use in combatting the lupus. It brought home to me that I really do have to be more careful because in a blink, I could sustain a serious injury and be totally out of commission for a long time.
Ok, it can happen to anyone. However, it is ironic to me that not long after reading that article, it happened to me. Go figure.
On the positive side, the pictures turned out great! Who needs Olan Mills when I have a capable daughter with an artistic flair and she takes much better pictures than most. If you have my fb page, you will see some of her work.
This problem or fog is something many of us have had to learn to live with. We all have different ways to cope. I personally keep all my appointments in my blackberry and if it is not in there, it doesn’t get done. I need to start making lists too, since I start one thing and then divert to another, then another until I forget what I originally was doing. It can be very frustrating knowing something is “in there” but you cannot access it. Your family and friends may think you are wierd, but this is a legitimate manifestation of those who suffer from lupus. This article is well written and helps explain more about it. Enjoy!
This information was obtained from www.lupus.org.
Memory Loss and “Lupus Fog”
The term “lupus fog” is almost universally known to people with lupus. The phrase reflects the difficulty that you may have in completing once-familiar tasks, such as remembering names and dates, keeping appointments, balancing your checkbook, or processing your thoughts. Properly termed “cognitive dysfunction” or “cognitive impairment,” this inability to recall information can be extremely frustrating. These symptoms may come and go, but may also be continuous, making school or work difficult or even impossible in extreme cases. People with both lupus and fibromyalgia are even more likely to experience cognitive problems.
If you are experiencing these signs of confusion and memory loss, you may benefit from the skills of a cognitive therapist, either a psychologist or speech-language pathologist. These professionals can help you develop coping techniques and strategies to improve concentration and overcome these difficulties. These techniques may include puzzles, games, biofeedback, using a daily appointment calendar, balancing activities to avoid stress, etc. Cognitive therapists can also explain how to use memory aids and decrease distractions.
These tips may help ease the frustrations of cognitive impairment caused by lupus.
- Pay attention when receiving new information. Repeat it or write it down. Verify any details.
- Focus on one task at a time.
- Take good care of your body; exercise, eat well, and get enough sleep.
- Learn memory techniques, such as associating a person’s name with an image, or repeating the name several times in conversation.
- Try to stay organized. One helpful hint is to use a year-long calendar notebook so that all appointments, plans, contact information, and reminders can be kept in one place.