Fatigue is the most common and disabling symptom experienced by those with autoimmune disorders. According to the Lupus Foundation, approximately 80% of those with lupus experience fatigue. I disagree, lol! I have never heard of someone with lupus that didnt experience fatigue! I have read several prominent rheumatologists say that they feel fatigue is about 100% in lupus.
Exhaustion, for us affected by Lupus is a permanent part of life. It is just as much a part of me as the fact that I have 2 feet. It will not go away..no matter how much I beg, plead, or wish it to. I have had SLE and other AI disorders for 23 years, and I do not remember what it is like to live life without my constant passenger of fatigue. Over the years it has worsened and evolved into a more severe exhaustion. But I have also gotten much better at dealing with it and accomodating my life around it without beating myslf up so much. I grieve for my inability to be spontaneous, to go about life without carefully planning each day. And I do so long to quell my fatigue with refreshing sleep. But, there is no sense wringing my hands, as it will not change a thing to just feel sorry for myself--and it actually will make me even more tired! It is very important for us to have understanding about what our daily struggles are about. Please share this with your family and friends. It is my hope that this will help you to minimize your sources of fatigue that are controllable, and learn to recognize the cues your body is telling you to address your level of fatigue. This will serve to give us all some empowerment.
1. Daily exhaustion
This is the inherent fatigue that I attribute to the inflammatory, autoimmune nature of Lupus and the other autoimmune disorders I have such as Rheumatoid Arthritis, Sjogren's, and Polymyositis, to nme a few. It never goes away, and can vary from day to day but is always there. Pain levels definitely increase this, as can the weather (too hot, too cold, or major weather changes that I can "feel" in my bones) Think what it feels like to function without having any sleep for 2 days. That is the blanket of exhaustion that is the basis for daily living with autoimmune illness. All of the following are added to this basic fatigue.
2. Overdoing fatigue
If I push myself too far and ignore the cues my body is sending me to stop and rest, my body will fight back. When I do more than I should, the result is an immobilizing fatigue. It comes on after the fact, i.e., do too much one day and feel it the next. If I push myself today, I very likely will have to cancel everything tomorrow and most likely a few days after that. An extended period of doing more than I should will almost certainly cause a flare.
3. Crumple and collapse fatigue
This complete exhaustion comes on suddenly, and I have to stop whatever I'm doing and sit (or lay down) as soon as possible. It can happen anywhere, at any time. This fatigue feels like I have just run 26 miles and worked out using weights strenuously..my muscles will literally shake from any effort. My brain loses its ability to compute anything—even simple tasks are impossible to figure out. I am unable to match socks, or even to care for my basic needs..as my body and brain are on total disconnect. I cannot complete a thought, and lists do not help..as I will most likely either not remember to look at them, or I will not be able to understand what is on them. Others can notice this fatigue, even though I may try to hide it with incredible effort. If I do not heed the warnings from this fatigue, I will end up in a major flare. And many times I will anyways.
4. Peanut butter fatigue
This fatigue is present when I open my eyes in the morning and know that it is going to be a particularly bad day. This tends to happen more in the cold weather, and seems to coincide with Raynaud’s symptoms. It feels like every effort I make to move is as if the air is made of thick peanut butter. My muscles and joints hurt, and doing anything is like walking with heavy weights. That super sore and heavy feeling you get from working out too strenuously..multiplied x 10! This fatigue prevents me from exercising on days when it is present, as even a little walking will make it much worse, and actually will increase my level of exhaustion. The best thing for me to do with peanut butter fatigue is heat, rest, and gentle stretches.
5. Flare exhaustion
Flare-related fatigue is the mother of all exhaustion..an unpredictable state of increased fatigue that can last for days or weeks. It can actually be all of the above types combined. There is no way to put off, or not heed this fatigue..or I will literally collapse. (Has happened) This is like someone who has had no sleep for about 3-4 days, then ran a marathon, lifted weights strenuously, and took sleeping meds..but didn't sleep! In addition, a flare brings multiple other symptoms that add to the exhaustion..pain, GI problems, like nausea, vomiting, diarrhea, abdominal pain, headache, etc. I have no choice but to rest..I will literally sleep 12-20 hours in a day during flares. Rest is vital, as is communication with my physician, as undetected infections can also disguise themselves with a flare and this fatigue. Once a flare starts, it is impossible to tell how long it will last, or how severe, and which bodily systems will be affected.
The following issues will add to the above fatigue, so be sure that you are in touch with your physician regarding them, to minimize the effect on your level of exhaustion.
*Stress (well doh)
*Depression and Anxiety
*Thyroid problems...make sure your dr has checked these at least once a year. 3-4 times a year if you are on thyroid medications.
*Anemia (This is common with Lupus)
*Low vitamin d levels
*Congestive heart failure
*Other concurrent conditions (Diabetes, Rheumatoid Arthritis, MS, etc.)
The following medications can cause or contribute to fatigue:
*Cold and allergy meds (allegra, benadryl, dextromethorphan)
*Muscle relaxants (flexeril, zanaflex, soma, robaxin, etc)
*Narcotic pain medications (percocet, vicodin, tramadol, morphine, dilaudid, eyc.)
*Other pain medications (lyrica, neurontin)
*Blood pressure medications (lopressor, labetalol, zestril, norvasc, procardia, lasix, bumex, atenolol, etc)
*Prednisone (acts as a stimulant, preventing sleep.Talk with your Dr about dosing earlier in the day)
*Antidepressnts (paxil, zoloft, prozac, celexa, lexapro, trazodone, elevil, remeron, seroquel, abilify, effexor, cymbalta, etc)
*Anxiety Medications (valium, ativan, xanax, klonopin, buspar, vistaril, etc.)
*Migraine prevention medications (elavil, topamax, depakote, inderal, etc.)
~Jenn Schoch <3 Facebook.com/Lupusandme