Neurological symptoms of systemic lupus erythematosus (SLE) are not uncommon. These symptoms include:
- Brain fog
- Sensory problems (such as challenges with eyesight, hearing, or smell)
- Anxiety
- Depression
- Headaches
- Insomnia
Lupus causes these symptoms because of inflammation damage to the heart, lungs, and circulatory system. Damage to these organs interferes with the flow of oxygen and nutrients to the sensitive tissues of the brain and nervous system.
Other organ systems can impact the nervous system too. The cells and structures of the nervous system itself can come under attack. In both instances, the nervous system becomes compromised and neuropsychiatric symptoms occur.
One of these symptoms is fatigue. Fatigue is a state of extreme tiredness where energy levels are low. In this state of malaise, small tasks like getting out of bed, showering, and walking feel as though they take more effort.
Fatigue can be measured using a self-assessed fatigue scale, and is a well-known symptom of lupus and other autoimmune diseases.
Fatigue has many different causes making it difficult to medically diagnose. One of the better-known mechanisms is neurological. In autoimmune diseases like MS, which directly attack the nervous system, you can actually see fatigue in action on a brain scan. Impulses take a less efficient or roundabout route to travel from the brain to the body. Every action takes more energy to transmit and activate, and this adds up. Inflammation may cause nerve signals to lose efficiency in lupus, too.
How are Fatigue and Neurological Symptoms Related?
An article in the Lancet goes deeper into the connection between neurological symptoms and fatigue:
“Chronic fatigue is a typical symptom of neurological diseases, and is most disabling in multiple sclerosis, postpoliomyelitis, poststroke, and in chronic fatigue syndrome.”
The article goes on to describe how various parts of the nervous system may be involved in propagating feelings of fatigue. Possibly linked elements include the central nervous system, the parts of the brain related to the senses and perception, and the neuromuscular junctions (where the nervous system interacts with the muscles).
The neuromuscular junction theory is particularly interesting. It speculates that more energy is required to activate and control the muscles, which may cause both muscles and nerves to become tired faster.
Structure and Metabolism
Structure and metabolism changes caused by lupus and lupus-related inflammation might be a key cause of fatigue in lupus and similar diseases. They cause changes in cell behavior or disruptions to the way that the cells work leading to fatigue. Specific altered areas include:
- Mitochondria
- The energy-producers of the cell
- Inflammation can disrupt the organelles – little organs – in the cell. Nerve cells (axons and ganglia) and muscle cells need a lot of energy, and may be more affected by a mitochondria issue.
- Neurotransmitters
- The signaling molecules that allow nervous system cells to communicate and coordinate with each other
- Improper communication between nervous system cells may cause fatigue along with other symptoms of lupus. These are also effected by exercise.
- Direct nervous system or circulatory system damage from immune system attacks
- This can cause damage to the circuits that the neurons use to communicate with each other as well as other organs in the body. The communication becomes less efficient, and thus requires more energy.
- All of the above
With inflammation disrupting mitochondria and neurotransmitters, and physical damage making an already difficult situation worse. Studies of prevalence of neurological symptoms and fatigue in patients with SLE have shown a link between the presence of neurological symptoms and both reported symptoms of fatigue and fatigue severity.
The exact mechanisms will depend on the symptoms of each individual person’s lupus. And, they may not be the only factors in play.
Different Types of Fatigue in Lupus
Aside from structural or metabolic changes that affect the nervous system and its supporting systems, there are a few other factors in lupus fatigue. Each has its own symptoms, mechanisms of action, and treatment.
Insomnia, Sleep, and Fatigue
Insomnia, narcolepsy and other sleep issues are a common symptom that many Lupus Warriors struggle with daily (or nightly). You can read more about them here. These issues have many causes, including:
- Pain
- Anxiety
- Dietary issues
- Stress
- Hormone levels
- Kidney or gastrointestinal issues
- Temperature sensitivity
- Medication side effects
All sleep-related symptoms have one thing in common, however: they all influence energy levels and brain and body function. Sleep-related problems can contribute to fatigue, which can in turn affect sleep cycles and energy levels further. In essence, fatigue and sleep problems contribute to each other.
Taking care of sleep symptoms can help with fatigue. You can find a few tips for how to go about doing that, here.
Physical Fatigue
Motor neuron damage directly affects the ability of the muscles to respond to commands from the brain. However, a group of sensory nerves called “Proprioceptors” might also affect how much effort it takes to move or act.
Proprioception (also known as kinesthesia or orientation) is our sense of where our body is in our environment. It is a sense that we do not often think about. Still, it is important for movement and, if it is impaired, it makes moving around much clumsier and more difficult (if not dangerous).
Proprioception, just like other senses (such as touch, taste, smell, and sight) uses sensory neurons to provide feedback to the brain about the location of the limbs and the body. These neurons can be damaged or interfered with by lupus. Even slight damage could make movement require more energy to maintain coordination of the limbs and body. This increase in energy need leads to physical and mental fatigue.
Dopamine and Fatigue in Lupus
Dopamine is a major neurotransmitter, responsible for regulating many different processes throughout the body. These processes include, but are not limited to:
- Mood regulation
- Nausea and appetite
- Cognition (including concentration and motivation)
- Movement (as a neurotransmitter involved in communicating between motor neurons)
- Circulatory system and kidney function
- Immune system regulation
Many of these dopamine-requiring functions are heavily related to lupus symptoms and to fatigue alike. One of the possible explanations of fatigue, the “dopamine imbalance theory,” is that inflammation may affect dopamine levels in the body. This could be by interfering with the production of dopamine in the brain. Or the ability of the neurons to sense dopamine.
Changes in dopamine levels would send all of these systems out of whack, causing or contributing to fatigue. Some support for this theory is that treatment with antidepressants or medications that affect dopamine can help with fatigue.
Treating Neurological Fatigue
Most treatments for neurological fatigue target the tiredness aspect, using stimulants to create a feeling of increased energy. Modafinil mofetil, a “wakefulness-promoting” medication, is one such medication that has been tested for treating nervous system-related fatigue.
In a 2018 study, researchers found little evidence of effectiveness against fatigue, and several study participants experienced adverse symptoms (though it is unclear whether these were from Modafinil or from their disease). Other studies also did not support its use, but Modafinil is still under consideration.
As suggested by the research, stimulants may not be the most effective way to treat fatigue. Medications that treat issues in the heart (or circulatory system), reduce inflammation, block pain, or improve kidney function may be able to help with fatigue.
Physical Therapy and Treatments
Physical therapy aimed at increasing the sensitivity of proprioceptive neurons (or motor neurons) is another potential treatment strategy. Through strengthening exercises, movement becomes less energy-intensive and the body is able to overcome damage within the system more easily. This reduce fatigue overall.
If you are experiencing fatigue and neurological symptoms, these treatments are worth considering. Lifestyle changes such as increased exercise and healthy diets have also proven useful, along with mindfulness training and other strategies. Talk to your lupus treatment team about the possibilities.
And know, you aren’t alone in experiencing fatigue and other symptoms of lupus.
28 thoughts on “Fatigue and Neuropsychiatric Symptoms of Lupus”
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Very informative and useful article. It helped me understand some of the sensory issues I am having with my lupus. I just wish that more professionals such as physical therapist could understand the depth in which lupus affects a patient. I was in a really nasty flare on a day I was evaluated by a physical therapist. My balance was off, my hearing and sight was as well. He wrote in his notes that I was being dramatic. But in truth it was my proprioceptive sense that was out of whack. I never finished my therapy sessions after reading that. My lupus has really affected my brain. But I feel most professionals don’t understand lupus at all.
And don’t forget the seziures!!!!! I had grand mal Seziures from the time I was 11 mo.old-30 years old!!!! I’m 61 now,but even though the seziures have left (only because I found the proper medication that controls it),I have headaches,tiredness,and ear trouble!!!!!
What sort ear problems are you experiencing?
Have most symptoms but keep testing negative for lupus. What should I speak to my drs about? Would like to get on some preventative medication
Don’t give up..document every Dr.visit..it has taken me 20 yrs to get treatment ..a stroke and kidney failure later..I am now on chemo ..hang in there
Have symptoms Go untreated feel misunderstood by drs
I have lupus the drs just don’t understand the pain. They always look at you like your being over dramatic or lying. I hate it !, I just want help
From the above comments I believe I would find a different rheumatologist. I’ve suffered for 20 years with SLE Lupus and have it all and many more rare things. Was diagnosed in 2 days. If you have a great rheumatologist they will understand and know how to treat. I suffer tremendously and you will too but that’s Lupus. There is medication to help and control the disease. Wish you well.
This fatigue is so bad I can’t move
I was just diagnosed with lupus my hand and feet hurt bad I can’t sleep at night ..I’m scared I don’t know what else may happen to me..I have no insurance so I’m going to a low income clinic..someone please tell me more
I have had symptoms for 20 plus years. Other than a postitive Ana test my blood work dosent show anything. 3 years ago the rheumatologist another de sent me to said the positive Ana test is because I had Graves’ disease 25 years ago. After I hit menopause every symptom I ever had and a lot more came on me where I couldn’t function. My nurse daughter saw my face one day and said mom you have lupus look at the butterfly rash on your face. I have had that many times. I looked up lupus and I had all the symptoms. I have been to the ER for chest pain and nerve pain. I have had a biopsy on one of the spots on my skin. It wasn’t cancer. My fingers have turned blue. Hair loss burning joint pain mostly in my knees and Sometimes I can’t walk because of my foot pain.There is not one symptom I have read for lupus that I have not had. Why is my blood work not showing it? My regular dr says I have it and put me on meds but the rheumatologist has never called me for an appt. it’s been a month. I think it’s because my blood work didn’t show anything. Are there other test besides blood work? Also I have this weird pain in my groin area. Does anyone else have that?
Yes i have it bad in my groin. It hurts reallybad. My head hurts the most. The back and side of my head feels like pressure. Like someone is squeezing my brains out.
I was diagnosed with SLE Lupus and also experience intermittent groin pain. I used to associate this with an old injury however know realize that Lupus makes sense for a lot of symptoms I have experienced over the years
I finally got diagnosed after years thinking it was just me they did a kidney biopsy to determine sle and slowly deteriorated my kidneys every flare up weaken my kidney on dialysis now-can’t take the fatigue and brain fog
Dear Paula,
First off, I am so so sorry you are going through all of this. They say autoimmune disorders are a journey and they are so right. It is not a fun one though. It sounds like you have Lupus, I am not a doctor but listening to you it sounds like it. The key is to find a great rheumatoid doctor, if you don’t like the one you are with keep “shopping”till you find one with a heart! This is SO important! Even if it takes several tries. I know that this is scary but you can do this, you are not alone. Find some support groups on line so you can find people to talk to.
Also, you do not necessarily need to have positive blood work. This is a myth. If you show all of the other signs, that is enough for the doctor to call it as the disease.
Again, find support, start reading up about how you can help yourself through diet, start taking small walks.
And rest when you can and don’t feel guilty about it.
Talk to your family amd let them know you don’t feel well so they can help you out around the house.
All the best to you.
And always remember, you are not alone, we are all with you.
Your Lupus buddy,
Kitty
Any competent rheumy will tell you that lupus is a clinical diagnosis. They have to follow you and monitor you for years to begin to develop accurate diagnoses. Find one who will listen to you and stick with that one.
I was diagnosed with SLE Lupus and also experience intermittent groin pain. I used to associate this with an old injury however know realize that Lupus makes sense for a lot of symptoms I have experienced over the years
Excellent article. I never new my narcolepsy was related to my lupus.
In 2017 I started having a lot of symptoms all at once. My hair started coming out and I lost half my hair. I had severe dry eye. Along with that, I had and still do have tremors, pain in my neck and the back of my head, and joint pain. My n a was a little on the high side and it was a speckled pattern. I still have no diagnosis. I was on Plaquenil for a year, but I had to go off of it because of eye problems. The doctors keep sending me for MRIs on my neck and it shows arthritis. I have migraines. After almost four years I still don’t have a diagnosis. Does anyone else have tremors? If I have pain, the Tremors get worse. My rheumatologist said I have a connective tissue disease but he is on the fence as to whether I have lupus or Sjogren’s.
I have had ?? Lupus for 21 plus years. My first rheumatologist did the lab tests & they were positive. However he later called it “ connective tissue disease”. For insurance purposes. He said insurance would more likely cover tests for connective tissue disease than lupus. That didn’t happen. He did put me on plaquenil and I have been on it all these years. Years later &:different rheumatologists I had a skin biopsy that show dermatomysis. Eleven years ago I had problems breathing. Was in hospital for a week. Different doctors tried to tell me I had legionnaires, Lyme s disease all kinds of other things. Finally got a good lung dr who diagnosed inflammation in lungs with fluid around lung from guess what. Lupus. Put me on IV steroids & prednisone and immediately I was better. Also put me on another med can’t remember. I have always had extreme fatigue. Night sweats, aches & pains. Feels like the worse case of the flu shortness of breath Gerd is a big problem for me. Now at age 77 I am having tremors on my left side & symptoms of dyskinesia . Saw a neurologist who did exam & ordered MRI & DAT scan where they put a dyes into your brain to check dopamine levels for Parkinson’s. (Parkinson’s does run in my family). He said he thinks I have Parkinson’s. Dopamine levels are very low. So he started me on carbidopa levodopa. My question is is it really Parkinson’s or are the decreased levels of dopamine from inflammation from lupus. If so will new med help or make it worse. Also side effects of new med are dyskinesia which will be worse than the tremors I now have. Any advice?
I have been diagnosed with SLE since 2009. However, started having rheumatoid arthritis at age 15. Have always had certain kinds of Odin all through the years. You said your doctor is in the fence as to whether you have lupus or Sjogrens? I just want to let you know that Sjogrens is a part of lupus. The dry eyes and dry mouth and dry skin are Sjogrens and lupus. There are so many things that are a part of lupus. I also have Reynauds which is a part of lupus. This is where your fingers and ties are very sensitive to hot and cold, turning blue and numb when cold, swelling when hot. I would suggest reading all you can about SLE, get to know the disease and it’s symptoms. There is so much involved with it.
Is there s genetic link? My brother has lupus, i have Graves disease, lately ive had terrible headaches, and severe depression
Yes! Genetic predispositions are there, usually get triggered by a virus.
I have tremors also and have lupus
Interesting article! Have Lupus most recently experience is extreme fatigue with breathing issues!
I have lupus along with fibro. not sure what else. But I do have brain fog quite often and I am tired alit. Also chronic sleep disorder was diagnosed with that 30 years before ever knowing anything about lupus. Sleep is so bad that sleep aides Dr he as given doesn’t work have tried so many that I spend nights in living room as not to bother my partner so he can rest, but really his meds knock him out probably wouldn’t affect his sleep. Ty for letting me speak.
I found this article very interesting, thanks for sharing
Five years or so ago I started having the red butterfly rash on my face lasted on and off for a year and a half. It’s started up again recently. I also feel sick with headaches, pain in joints and muscles, fatigue, nausea. Can’t think straight. I have been diagnosed with fibromyalgia years ago. But wondering if I should talk to my doctor about lupus.