**I have updated this post with some new information about fatigue from another website as well. The new updated information is in the lower half of this post. 2019**
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. I have permission to reprint it here.
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
Updated information from another website called: https://kaleidoscopefightinglupus.org
Lupus Fatigue: Causes, Treatment and Managing Expectations Reprinted with permission
It is easy to oversimplify fatigue as merely the feeling of being really tired, especially if you don’t have chronic illness or autoimmune disease. I may say that I feel fatigued after a hard workout at the gym after my muscles have been stretched to their limits and beyond, but I can recover from that quickly with a hot shower. As an individual with lupus, however, you know first-hand what it is like to experience true fatigue and feel like there’s no quick-fix.
Fatigue is more than just a desire for a shot of espresso in the morning or the need to hit the sack a little early to make up for a late night out. Fatigue can be a physically and emotionally debilitating conundrum – one that is not easy to solve and it goes beyond curling up on the couch with a throw blanket and a good movie waiting for of sleep to take its course. Fatigue can mean that sleep itself is illusive.
In their article “Fatigue in Systemic Lupus Erythematosus,” researchers Grace Ahn and Rosalind Ramsey-Goldman note that approximately 53-80% of individuals with SLE report experiencing fatigue as one of their main symptoms. According to the Mayo Clinic, fatigue is the feeling of “unrelenting exhaustion” that is “profound and isn’t relieved by rest.” It can grossly affect your ability to function day-to-day and experience a good quality of life. Fatigue is a loss of energy you may fear you’ll never recoup. Therefore, fatigue is not only physically draining, but can be emotionally devastating as well.
Getting to know yourself and your limitations, however, and developing the patience and skill to cope with fatigue will give you the control you need back in your life so that you can cope with whatever life throws at you. The ability to manage your time and energy can have profound effects that reach well beyond coping with autoimmune disease and can give you hope.
What are the causes and symptoms of lupus fatigue?
Ellen Greenlaw of WebMD states that “experts aren’t exactly sure what causes the fatigue of lupus.” You may actually be your own best expert in understanding what completely wipes you out, though having an idea about what affects your energy level may not make it that much easier to find a solution on your own. Experts speculate that certain medications or even overlap diseases such as fibromyalgia, anemia, kidney issues, or depression can be the cause of fatigue. Ahn and Ramsey-Goldman refer to studies that indicate how an insufficiency or deficiency of vitamin D may also contribute to feelings of fatigue.
Lupus fatigue can manifest itself both physically and/or emotionally. You may physically feel like your bones and joints are exhausted and worn down from constant pain and inflammation. You may feel emotionally fatigued from the stress of having lupus, the difficulties in coping with the changes to your life that a diagnosis brings, or the guilt you may struggle with because your role in your family or at work has drastically changed.
All of this can understandably cause a significant amount of anxiety and depression.
Your cognitive function can also be affected by fatigue as you may experience lupus brain fog. You may find yourself not being able to think as clearly, quickly, or coherently as you did before your lupus diagnosis and this can be both frightening and frustrating. It’s also a vicious cycle because the more fatigued you become, the more you may experience brain fog – and vice versa.
What does the research say about managing lupus fatigue?
In 2014, researchers Melissa Cunningham and Hon Yuen surveyed much of the published literature surrounding the treatment of fatigue in lupus patients. The information they found highlighted nine strategies for managing fatigue and created a ranking system for their effectiveness. It is important to note that they did not work directly with patients or researched each strategy themselves; they just surveyed the published articles and compared the results:
Psychosocial Intervention: This kind of treatment includes such things as cognitive behavioral therapy, counseling, psychotherapy, biofeedback and even socially engaging with your support system and stress management. While each can have many positive effects, it was difficult to find evidence for specifically helping with fatigue.
Exercise: Studies show that aerobic exercise may significantly help reduce fatigue.
Diet: Making changes to your diet such as eating foods low on the glycemic index and low in calories can have many positive impacts how you feel, and these can indirectly help with fatigue – though it is not seen as a treatment.
Vitamin D Supplementation: As I mentioned earlier, vitamin D – or a lack there of – can potentially impact your energy level, however, this survey did not see a direct, significant impact on fatigue by itself.
N-acetylcysteine (NAC): NAC is an amino acid, which inhibits autoimmune inflammatory processes. NAC taken orally each day was shown to improve fatigue after 1 to 3 months.
Dehydroepiandrosterone (DHEA): DHEA (thank goodness for acronyms!) is a natural steroidal hormone that has many functions in the body – one of which is to moderate the immune response. Patients with lupus often have low levels of DHEA and this may relate to increased fatigue. However, the research evidence has not been able to show that it helps with lupus fatigue.
Belimumab: Belimumab (e.g. Benlysta) is a manufactured antibody that attacks a particular protein that occurs at high levels in patients with SLE. This protein stimulates the B-lymphocytes, which in turn lead to the autoimmune response of lupus. The research confirms that belimumab treatments significantly reduce lupus fatigue, but these treatments are very expensive.
Ultraviolet-A1 Phototherapy: Long-wavelength ultraviolet radiation (UVA-1) has been shown to suppress the immune system and has been a therapy for SLE. It also seems to have some effect on lupus fatigue.
Acupuncture: Cunningham and Yuen recorded that 93% of individuals with lupus across 13 studies said that they experiencing less fatigue as a result of acupuncture, though the levels of measurable improvement using fatigue tests were much lower. They also state “acupuncture is not recommended for SLE patients with advanced visceral organ involvement.”
Of these nine treatments, aerobic exercise and the belimumab therapy seemed to show the best potential for directly treating fatigue. However, as Cunningham and Yuen note, “SLE-related fatigue is a complex phenomenon” and is not necessarily one-size-fits-all. Each treatment has its own possible side effects and costs that must also be taken into account. Still, the information above may be helpful when discussing fatigue treatment options with your healthcare practitioner.
Combating and Coping with Fatigue
Here are some other ways you can potentially combat and cope with the seemingly unrelenting nature of lupus fatigue:
Treat any underlying illnesses – Speak to your healthcare practitioner about your fatigue in order to either rule out – or treat – any underlying illness that may be going undiagnosed such as kidney issues, anemia, thyroid disease, or fibromyalgia.
Rest – Ahn and Ramsey-Goldman acknowledge that up to 91% of individuals with lupus experience sleep disturbance making it imperative to discuss any sleep challenges you have with your healthcare practitioner to make sure you are getting optimal sleep.
Prioritize activities – While an invitation to go to lunch with a friend sounds tempting, think about what you need to accomplish before and after that visit to make sound decisions around where you need to spend your energy. Don’t be afraid to speak up and advocate for yourself if you need downtime.
Track fatigue – Start tracking the days you feel fatigued to see if you can recognize patterns. Even if you can’t see a pattern initially, you’ll have an accurate record of your symptoms to bring with you to your next healthcare appointment. You will be able to advocate for yourself more confidently as well as give your practitioner the information she needs.
Practice patience and acceptance – Be patient with yourself and know that you will have good days along with the not-so-good ones. Pushing yourself beyond your limits isn’t going to do anyone any good … especially you!
Be open and honest about how you are feeling – This means with yourself as well as with others. Don’t be afraid to tell someone you’re just not up for a lot of activity today or that you need help with chores around the house. Read “The Dynamics of Relationships – Lupus, Family and Support Systems” for more information on how you can express yourself.
Keep healthy – Maintaining a healthy weight and eating a healthy diet will give your body and mind the support they need for holistic well-being. Quick drive-thru meals chosen in haste can actually do more harm than good. Opt for plenty of fruits and vegetables, whole foods with low sodium, stay away from too much sugar, and consume alcohol and caffeine in moderation or abstain from them altogether. Other ideas for healthy eating can be found in this blog article.
Acute feelings of fatigue can make everything seem and feel worse. It is no wonder how debilitating and exhausting dealing with lupus on a daily basis can be. Living in-tune with how you are feeling both physically and emotionally – both the good days and the bad – can be the key to opening the door to discussion with a trusted healthcare practitioner about ways you can combat these feelings of overall malaise in order to strengthen mind, body and spirit.