Brain symptoms are the least acknowledged and most misunderstood symptoms of lupus. But over 50% of patients experience some sort of brain symptom in the course of their disease.
Neuropsychiatric symptoms happen when lupus affects the brain, spinal cord, or any of the other systems of nerves in the body. The symptoms can show up in many different ways, but what all of the symptoms have in common is that they can influence almost every aspect of a person’s life. Given how prevalent they are and their effects, it’s hard to believe how infrequently doctors consider these symptoms a priority. People with lupus who have neurological symptoms might find themselves disbelieved or, at best, believed but not helped.
So why is it that physicians tend to think people are “pretending” to be sick? The last thing I want in my life is criticism from someone on the outside looking in. FYI: I hate hospitals and terrible doctors with a passion that burns so deep. Chronic illness(es) are not fun nor are they a “figment of the imagination.”
I feel the same way you do, @JD. But hard as it may be to believe, there are people out there who pretend to be ill. Maybe it makes them feel better psychologically to have someone make a fuss about them. Maybe they just want attention. Whatever the reason is, they end up making life harder for those of us who really are sick.
My sentiments exactly. It took me years to find a doctor who would listen.
JD, Ditto! Ditto! Ditto!
It’s maddening when this happens. I feel like I’m having trouble focusing when a lupus flare involves brain function. I am at work trying my best and thinking I’m doing okay. The next day or two the mistakes start to show up in the data base, orders and notes that I make. It makes me sad and I keep thinking that work may lose patience with me at some point. I don’t want to go on disability though.
I was in the same position as you several years ago. I was working in healthcare. I found my brain fog and memory problems were so exacerbated by the stress of physical and mental fatigue from my job that I would forget important things. Toward the end I forgot how to run a biopsy machine is been running for years. I had my manager take me off of biopsies and did other things but eventually I just couldn’t keep going. There also becomes a point when you are no longer able to perform the duties listed in your job description. When that happens you file for disability. If you have a work disability policy you’d file for that and SSDI simultaneously but separately. Work policy pay if you can’t work at the job you had when filing. SSDI pays if you can’t work at any job. SSDI is extremely hard to get and takes years. Best of luck to you.
I agree JD lupus warriors do not want to be sick, we fake being well and minimise our symptoms as we don’t wish to burden others! I get tired of explaining my symptoms to others so now I just say NO to their requests, I’ve had a few surprised looks but interestingly they have not asked for me to explain the NO?!
The thing that I don’t understand is when you explain or express changes that happening to your body, brain or total physical health they look at you like your crazy. I think the health care “physicians” should be more educated or trained on how to treat Lupus!!
I am literally having this problem and dont know what I have but I literally have of the symptoms on that list with exception to the seizures. I have been freaking out for months trying to figure out what is wrong with me and was told that I just have migraines. My husband is also tired of me researching trying to figure out what is wrong and thinks Im losing it. I even had my doctor ask if I wanted to see a counselor because I am fine. Im like “I am dizzy like I am drunk having headaches and cant think straight, I am not fine”. Trying to ask doctors the possibilities of other things is a headache too. they think you just think you have everything when you are trying to get to the bottom of what is wrong so you can feel normal again.
I feel the exact same way & ive been explaining my everyday dizziness as a drunk feeling also. I’ve been sick for 6mths now with no answers. My docs do the same thing!
I have all of the above as well and more except the seizures. I have had many jerky movements that comes with muscle spasms too. Sometimes, I’ll be sound asleep and get jerked awake I often wondered if they are petit mal seizures since I have never been know to have them. I started out being very tired, having conjunctivitis to brain fog, auditory hallucinations, nausea, Vertigo, either diarhea or constipated, muscle spasms, all over body pain, weakness, pin and needles ( confined to rt thigh), tingling, numbness everything, blurry vision, double vision, floaters wheezing, cant get my temperature to regulate,, going from hot to cold in mins, enlarged heart, sore throat, inflamed sinuses, runny nose, either dried out or watery eyes, head aches, brain fog, memory problems, word recollections, forgetting my own name at times even, driving and forgetting where I am going, moody, extreme anxiety, depression, insomnia, irritable, and off hand, cant remember what else. Only what I am feeling right now. My throat hasn’t been sore finally for 2 weeks after being sore for almost 8 months straight! I’ve had several tests to rule things out and the last dr at urgent care seems to think its all mental. I am not ashamed to admit if it s all mental but I don’t believe for a second its all mental. I just don’t think any of the drs I have seen don’t care to find out what is the real problem. I’m blaming it on mold poisoning only bc my daughter experienced about 5 of these same symptoms only she got rashes 2x within a yr and I didn’t, I have never seen a neurologist either.
It took me finding the right rheumatologist to properly diagnose and treat my Lupus. The good news is she believes me and is trying her best to treat. The bad news is I have had to stop the first three medications because of side affects. Don’t give up on yourself and don’t be afraid to continue your search for a knowledgeable and caring physician.
So correct,I’m all this…After 14 years they still say but you look good…
This is almost exactly what I’ve been experiencing for over 5 years now and still haven’t been diagnosed yet! My vision is almost gone, the brain fog is debilitating, my legs and feet swell up and turn purple, my veins in my hands swell up and feel like there going to burst and ai have hard lumps in my jaw, skull, legs and foot that may be tumors. This is horrible! My knees swell and the bones crunch when I walk or bend down, I’ve been going bald for years now, I can’t even wash dishes because the pain in my hands are so bad, and I have 4 children 2 who have severe disabilities and require constant care and support and I’m exhausted ALL THE TIME! I also believe it was brought on by mold exposure years ago when I caught pnemonia 3 times within 2 1/2 months. The house we were in was leaking water every time it rained and that’s when my symptoms went from very mild to severe. 5 years living this way without any answers from my physicians. It’s depressing at the very least. I hope you find answers soon and can start to feel better.
I was diagnosed with Lupus when I was around 18/19 and it has been an awful journey until now (current age: 37) to be honest. I’ve had endometriosis as well, and had to have a full hysterectomy at the age of 30. Since January of 2021, I’ve been experiencing so many new issues and I’ve documented all of them because at some point you 100% feel crazy or you feel like people around you start to think you’re making it up. Recently, I’ve had headaches, blurred vision, floaters, memory issues (almost feels like pregnancy brain), and movement issues. My Rheumatologist is the absolute best Dr, so I’m blessed by God for that! We are going to see a neurologist for brain swelling. The other bizarre issue I have is that my eyes either water or feel scratchy almost every morning and my veins swell up in my feet and hands so badly that they hurt. Another issue is the “knocking” or wave like spasms in my side (from rib cage to hip) on the left side that no one can explain. The One common thing we see in the blood is that my D-Dimer is 10x or 2x higher than it should be, but no blood clot is found. Which has been extremely frustrating. My white blood cells are below the range and they found WBC in my urine as well on 3/28 when I was in the hospital.
I have sleep apnea and gastritis as well, so that hasn’t helped me in feeling well either!
Tatiana, Don’t give up! Find a different doctor. If that one doesn’t listen, find another one. I don’t have Lupus but I do have MS. It took me 5 years and more doctors than I can count before I found one that would actually listen and do something. But before that, one doctor told me it was psychological and sent me to a psychologist. It was the psychologist that told me I was Not crazy and referred me to the doctor that finally helped me.
The symptoms of Lupus and MS are so similar. I also have the dizziness, brain fog, blurred vision, memory issues, etc… It’s all very frustrating but finding that one doctor that listens makes does help. Good luck to you and God Bless
Tell your doctor that you want a ANA test done. It’s just a simple blood test that will show if you have lupus
I continue to have strange things.happen to me .one day it will be my complete hand and.odd rashes…My teeth get so sore and I get bumps that are so sore on my tongue plus the mental fog and extreme tiredness ..my anixuty continues to get worse but I can’t get a dr to give me anything for my nerves…
I have Celiac, mthfr and hashimoto’s. When I get a flare up due to inflammation or exposed to some thing I get brain fog, memory issue and I do feel drunk. My new symptom is double vision. I take no medications. I do supplements , mostly grain and dairy free. No sugar. I haven’t quit coffee. Tea has fluoride that effects my thyroid. I am still working.
I have been diagnosed with lupus for 35 years plus rheumatoid arthritis. I’ve been experiencing memory loss in the last couple years. I tell my family I may end up with alzheimers because sometimes I’m embarrassed about not remembering things alot. I never thought it could be associated with my lupus. I will be discussing this with my doctor.
Oh, sweetie I feel the same way. I tell my family all the time I need to be checked for early Alzheimer’s. I’m an avid reader and know (or used to know how to spell) how to pronounce words. Here for the last year I can’t pronounce anything. It’s like my brain and mouth will not work together.
Words won’t come to me. The simplist ones I know. I’m 48, and was diagnosed in 98. It started getting bad about 5 years ago. Nothing makes me madder than for my husband to go behind me and check every little thing I tell him. Now my grown sons are doing it. How much more pride can you lose?! I always say someone has it worse than me (about everthing) when I get in self pity mode.
These are articles and comments are so helpful to me. It helps to decrease the isolation I feel with this disease. I have been living with Lupus for 25 years. I have dealt with everything from acute kidney failure to hair loss and everything in between. But this brain fog piece is by far the most challenging thing I’ve had to face as it affects so many areas of my life. Thanks everyone for being so open with your experiences.
Thank you for sharing, Tina!
I was diagnosed with Lupus when I was around 18/19 and it has been an awful journey until now (current age: 37) to be honest. I’ve had endometriosis as well, and had to have a full hysterectomy at the age of 30. Since January of 2021, I’ve been experiencing so many new issues and I’ve documented all of them because at some point you 100% feel crazy or you feel like people around you start to think you’re making it up. Recently, I’ve had headaches, blurred vision, floaters, memory issues (almost feels like pregnancy brain), and movement issues. My Rheumatologist is the absolute best Dr, so I’m blessed by God for that! We are going to see a neurologist for brain swelling. The other bizarre issue I have is that my eyes either water or feel scratchy almost every morning and my veins swell up in my feet and hands so badly that they hurt. Another issue is the “knocking” or wave like spasms in my side (from rib cage to hip) on the left side that no one can explain. The One common thing we see in the blood is that my D-Dimer is 10x or 2x higher than it should be, but no blood clot is found. Which has been extremely frustrating. My white blood cells are below the range and they found WBC in my urine as well on 3/28 when I was in the hospital.
I have sleep apnea and gastritis as well, so that hasn’t helped me in feeling well either!
I’ve been diagnosed with Lupus and Hashimotos for @ 3 years but have had symptoms for probably 10. One of the most frustrating is the confusion and memory issues I have that periodically get better and worse with flairs. I find I have to concentrate so much harder on everyday tasks in order to perform them, ,especially while driving. I’ve also noticed my hearing gets worse during these episodes. The problem with the Drs taking these symptoms seriously I feel has to do with a lack of correlation between symptoms and solid lab data – lab results very so much and do not always reflect the presence or severity of a particular symptom at all. Stay strong #LupusWarriors
I’m presently at the hospital, with my wife lying down beside me. She was diagonised with SLE around 3 months ago, this month was her first Lupus Flare, and it was devastating. In our 19 years of maritial bliss, I had never seen her in this state, it breaks my heart everytime to see her struggling to do even the simpliest of tasks. She is the most amazing woman I have ever known and now she is not herself.When will this flare be over? Please advise.
I was diagnosed with Lupus when I was around 18/19 and it has been an awful journey until now (current age: 37) to be honest. I’ve had endometriosis as well, and had to have a full hysterectomy at the age of 30. Since January of 2021, I’ve been experiencing so many new issues and I’ve documented all of them because at some point you 100% feel crazy or you feel like people around you start to think you’re making it up. Recently, I’ve had headaches, blurred vision, floaters, memory issues (almost feels like pregnancy brain), and movement issues. My Rheumatologist is the absolute best Dr, so I’m blessed by God for that! We are going to see a neurologist for brain swelling. The other bizarre issue I have is that my eyes either water or feel scratchy almost every morning and my veins swell up in my feet and hands so badly that they hurt. Another issue is the “knocking” or wave like spasms in my side (from rib cage to hip) on the left side that no one can explain. The One common thing we see in the blood is that my D-Dimer is 10x or 2x higher than it should be, but no blood clot is found. Which has been extremely frustrating. My white blood cells are below the range and they found WBC in my urine as well on 3/28 when I was in the hospital.
I have sleep apnea and gastritis as well, so that hasn’t helped me in feeling well either!
I am 61 years old and was diagnosed with lupus at age 15. I have fought many battles including many in which I almost succumbed to death. It is presently in my blood and my kidneys. I have an IQ of over 140 but these past couple of years my memory has started to falter. Note my job as a second’s grade teacher is on the line. I forget Simple daily tasks and now the memory blocks are being being intensified because of anxiety which has led to terrible tremors. I have been searching for answers for a very long time and just today one of my friends found this article. I want to follow up with this but I don’t think my rheumatologist even knows this is a thing. When I went to see him explaining the memory loss and tremors he had no idea what it was and said it probably wasn’t lupus because all of my labs look good.
I am 61 years old and was diagnosed with lupus at age 15. I have fought many battles including many in which I almost succumbed to death. It is presently in my blood and my kidneys. I have an IQ of over 140 but these past couple of years my memory has started to falter. Note my job as a second’s grade teacher is on the line. I forget Simple daily tasks and now the memory blocks are being being intensified because of anxiety which has led to terrible tremors. I have been searching for answers for a very long time and just today one of my friends found this article. I want to follow up with this but I don’t think my rheumatologist even knows this is a thing. When I went to see him explaining the memory loss and tremors he had no idea what it was and said it probably wasn’t lupus because all of my labs look good.
Hi, I have been diagnosed with Lupus since 2002, since 2018 I have been suffering with blurred visual disturbances & later on that year seizures. It was discovered by an mri scan in 2010 that I have a left sided temporal lobe Meningeoma but not told, it last grew in 2017 & part of it has calcified, this no growth coincided with my starting an immune suppressant called Mercaptopurine. I was eventually told about the benign tumour in 2020 & put on Levitiracetam for my seizures which work quite well until I am in a flare, then the seizures start to bleed through, I have had a blood clot in the right temporal lobe also but it wasn’t explained why & just left. my GP & I can see a pattern forming & he believes like I do that they are autoimmune related, but I can’t pin my neurologist down to confirm it and my Rheumatologist doesn’t have any experience of Lupus, my last specialist left during covid & the hospital Trust has not attracted anyone new to the position. I feel totally alone as I know alot of us do.
I m not expecting miracles I just want some confirmation!