This is what it feels like to have lupus

Jo Ann Plante
Even if I were to lay out all of her symptoms one by one you might not figure out that Jo Ann Plante has lupus. That’s because the disease is not well known to the average person — even though it’s estimated that more than 16,000 new cases are reported every year in the United States. It’s also because lupus has lots of symptoms that are similar to a host of other diseases. It’s sometimes called the “great imitator.”

Jo Ann certainly didn’t know what was wrong with her. It all began with what seemed like a little cold just before Christmas a few years ago. Not a big deal, she says, but she couldn’t get rid of it.

By New Year’s her mother suggested that she might have the flu. At the time, she didn’t have health insurance, so put off going to see her doctor. She kept feeling worse and was losing weight. All told, 20 to 30 pounds, which was unusual for her because she has thyroid disease and has trouble losing weight.

When white spots appeared on her tongue, she reluctantly went to her dentist. It’s not tongue cancer he told her and urged her to see a doctor. By then, it was mid-February. When she finally went, her doctor took one look and said she needed to be admitted.

Once in the hospital, she was finally diagnosed with lupus. Lupus is an autoimmune disorder that can attack the entire body. When Jo Ann was admitted, her body was already shutting down. Her kidneys, liver, everything, she says. Doctors began an aggressive course of treatment that included intravenous fluids and strong medications. To stop and then reverse the disease process.

Common symptoms of lupus

According to the Lupus Foundation of America, “Because lupus can affect so many different organs, a wide range of symptoms can occur. These symptoms may come and go, and different symptoms may appear at different times during the course of the disease.”

A classic lupus symptom is a butterfly-shaped rash across the cheeks and nose. “When you start to get that rash,” says Jo Ann, “you need to realize something is going on and you need to get to a dermatologist to see what is the cause of that rash. Sometimes they can take a look at you and they know if it’s lupus or not. I thought I had a cold because my face was all red and it was swollen.”

The most common symptoms (courtesy Mayo Clinic) include

  • Extreme fatigue
  • Painful or swollen joints
  • Fever
  • Butterfly-shaped rash on the face the covers the cheeks and bridge of the nose
  • Sensitivity to sunlight
  • Fingers and toes that turn blue under stress or with cold exposure
  • Shortness of breath
  • Chest pain
  • Dry eyes
  • Headaches, confusion and memory loss

“I was becoming so weak,” says Jo Ann, “and so tired and so muddled with everything, I couldn’t even think straight. Looking back, this is what happens. It’s just a breakdown of everything and it’s so subtle that you don’t even realize that you’re losing it. But you are.”

Lupus triggers

Jo Ann says it’s hard to pinpoint what caused her lupus. It could be that she’d been under a great deal of stress the previous few years. It could be genetic, although no one else in her family has the disease.

Sometimes it can be triggered by exposure to something in the environment — sunlight, for example. An infection. Extreme stress. It can develop in anyone, even children, but it’s most common in women between the ages of 15 and 44. Jo Ann is in her early 60s.

Whatever the cause or trigger, when someone has lupus, the body attacks its own cells and causes pain and swelling. “If you get it in your joints, all your joints hurt,” Jo Ann explains.”It feels like somebody hit you with a hammer in the knees. Or your thumb. It feels like your thumb is breaking in half and you’re like wow, what’s going on with this? Just to move your head, it hurts. It’s so heavy. Dead weight. The pain is indescribable. That’s what lupus feels like and for me it went into my lungs and I had difficulty breathing. Every time I inhaled I had this terrible pain. I thought I was having a heart attack, but it was lupus. I was very, very sick.”

With proper treatment, including medications, Jo Ann gradually began to feel well again, but it took a year. But lupus is a chronic disease and although it can go into remission, there is always the threat of a flare up. Jo Ann keeps a close watch on potential triggers.

“Any sudden emotional thing could throw your system off,” she says. “You have to try to be calm. I have to get a lot of rest. Eight hours of sleep. Drink a lot of fluids. Eat healthy. I don’t have any problem doing any of those things. And just try not to let things bother you.”

Jo Ann has been fortunate — no flare ups since the first one five years ago. She decided to share her story because she learned some valuable lessons the hard way and hopes she can spare other people the pain and misery she went through. “The first thing,” she says, “is to control your stress because that can be the root of many, many diseases and many problems. Next, “don’t be afraid to go to the doctor if you think something is wrong. It could save your life.”

More information

If you’d like to learn more about lupus, the Lupus Foundation of America and the American College of Rheumatology have quite a bit of information and links to more resources.

Diane Atwood

About Diane Atwood

For more than 20 years, Diane was the health reporter on WCSH 6. Before that, a radiation therapist at Maine Medical Center and after, Manager of Marketing/PR at Mercy Hospital. She now hosts and produces the Catching Health podcast and writes the award-winning blog Catching Health with Diane Atwood.