As I was reading stories of how others came to be diagnosed with lupus, I thought about my own experience. Resulting from this comparison, here’s six warning signs for lupus that are less common.
Disclaimer: I am not a doctor. I’m an individual that suffers from lupus. All content found on lupusisgoingdown.com, including text, images, audio, or other formats, were created for informational purposes only. The Content is not intended or implied to be a substitute for professional medical or mental health advice, diagnosis, or treatment.
But, before I get into the actual symptoms. I want to take a brief second to note some other observations.
First of all, no two experiences with lupus are the same. The disease acts differently in each person. So, while there’s a list of typical signs and symptoms of lupus, no one shares exactly the same list.
Also, there’s always the fringe to think about. Just because a symptom is typical, that doesn’t mean discount the atypical. As someone with lupus, you probably have experienced your symptoms being discounted by someone along your journey.
And, that’s what brought me to this post. Symptoms that are less than common, but have still been reported by people diagnosed with lupus.
So, here they are.
Mostly from what I’ve seen, people mainly talk about weight loss when it comes to lupus. Yet, the reverse can be true, too. Lupus, can cause weight gain.
Especially, if you are experiencing hypothyroidism (an under active thyroid gland). According to Johns Hopkins Lupus Center, the number of lupus patients that suffer from hypothyroidism is under 10% (Source).
In addition to weight gain, hypothyroidism can cause hair loss, constipation, dry skin, or sexual dysfunction.
Personally, I never experienced weight gain. Likewise, I’ve never experienced weight loss either. In fact, I weighed 120 lbs all four years of high school after my diagnosis. I was underweight and couldn’t gain.
Basically, lupus headache acts like a migraine. You know what I’m talking about- that throbbing or pulsing pain in your head that won’t go away. Sometimes, it gets so bad that you are nauseous. And, all you want to do is sit in a dark, silent room.
Also, you could see an aura or flashing lights before it hits you.
Now, lupus headaches can be caused by vasculitis, inflammation of the blood vessels or by other causes.
Oh yeah, these headaches like to linger and over-the-counter medicine doesn’t help.
At least, this has been my experience. It was actually a severe, migraine-like headache followed by a seizure that brought me to the hospital when I was in middle school. And, that’s when I was diagnosed with lupus after the doctors noticed other symptoms and ordered further tests.
Since I’ve already mentioned these I might as well go into further detail. According to research, only 10% of lupus patients experience seizures. Yet, it’s one of the classic signs of lupus used to diagnose the disease.
So, what does a seizure look like? Well, it can look like a couple of things. For example, you can lose consciousness, your muscles stiffen, and your body shakes. Or, you can simply space out for a moment.
One lupus patient even reported having a seizure and feeling like she present but not. In other words, she realized what was going on around her, but she couldn’t speak or move. For her, she said it was if she was paralyzed for a time (Source).
For me, I had seizures like most people think of seizures. One time, I was sitting in class and went to get up to sharpen my pencil. And, that’s all I remember. Next thing I know, I’m in a bed at the emergency room and my mom told me I had a seizure.
Now, I knew it was coming because I had a severe headache. And, my hands and my face would go numb right before the seizure hit. After that first one, I learned to lie down as soon as those feelings hit.
Another of the 6 less common warning signs for lupus is brain fog. Cognitive dysfunction, other wise known as brain fog, is that lack of mental clarity, focus, or the ability to remember things. 20% of lupus patients complain of brain fog.
Have you ever read the same sentence over and over again, and it still doesn’t make sense? Or, have you forgot what you were doing right in the middle of doing it? Guess what? You could be suffering from brain fog.
Personally, I was always getting in trouble for not paying attention. My mother and my teachers constantly accused me of gazing off into the distance. And, when I had to answer a question, I knew what I wanted to say, yet I didn’t make sense when I said it out loud.
If you want to know more about how to cope with brain fog, then read my post– How To Combat Brain Fog With Lupus for tips about dealing with this issue.
High Blood Pressure
Many lupus patients experience cardiovascular issues with lupus. In fact, cardiovascular disease is the number one cause of death among lupus sufferers. Especially, this is true since cardiovascular disease can lead to heart attacks and strokes. And, according to research, cardiovascular disease in men with lupus can be more aggressive (For more about how lupus affects men, read my post- Can Men Have Lupus?).
So what does this have to do with high blood pressure? Well, high blood pressure is a type of cardiovascular disease. Yet, it can also be caused by other underlying conditions. For instance, high blood pressure can be a symptom of kidney disease like lupus nephritis.
Interestingly, it was high blood pressure that signaled that my lupus had relapsed from a prolonged remission. Honestly, I thought that my blood pressure was up because of stress from work. But, it wasn’t
Before I could even get to the doctor, I had a stroke right in the middle of teaching. One minute, I was sitting on my stool and discussing Shakespeare. The next minute, I was on the floor.
Once I was hospitalized, the doctors confirmed that my lupus was back, and I was experiencing lupus nephritis.
Because of your experience, many of you know that depression and anxiety with lupus is a reality. Yet, other mental issues caused by lupus exist, also. And, lupus psychosis is one such mental illness that can be one of the warning signs for lupus.
Basically, lupus psychosis appears just as it sounds: a mental disorder where one breaks with reality.
In other words, lupus psychosis brings with it problems with your thought processes. Likewise, lupus psychosis can cause hallucinations or delusions. Also, you can experience mood swings (looks like bipolar disorder, but it’s not).
Interestingly, the majority of lupus psychosis instances usually occur around the time of diagnosis. And, again, it’s more prevalent in men along with people of African descent or younger lupus patients.
Don’t Ignore These 6 Less Common Warning Signs
As someone diagnosed with lupus, you know that lupus acts differently in everyone. While we may share some common symptoms, each one of us can point to something different from the person next to us. Be honest, lupus patients love to compare symptoms.
And, the amazing thing is that we all present differently. Yes, there’s a standard list. Yet, don’t ignore the less common symptoms.
If you expect you have lupus, share everything you can think of with your doctor. If you can’t remember everything write it down when you do remember. It’s important for your doctor to get as clear a picture of your symptoms as possible.
Speaking up is important. Because, if you don’t, it might be too late. Take me for example, I didn’t address my high blood pressure until it was too late. Fortunately, I survived my stroke. But, it could’ve gone the other way. And, I wouldn’t be writing this post.
Please pay attention to your body. You’re too important to ignore it. See a doctor when you experience these symptoms.
I hope this post helped you. I’m not a medical expert. I’m just a lupus warrior that wants to pass on information.
If this has helped you, please share this post social so others can be helped, too.
If you have any comments or questions, please leave them below. I love to increase the lupus dialogue.
Wishing you better days ahead