Lupus And A Sense of Control

We recently surveyed hundreds of people with lupus to find out more about their daily experiences, diagnosis journey, symptoms, and how it all affects life in general. The results from our 2020 Lupus In America survey revealed that only 16 percent of 589 people surveyed said they feel their lupus is controlled.

As of 2020, there is only one FDA-approved treatment for lupus. This could understandably weigh heavily on the outlook for the 63 percent of people who took the survey who claim their condition is moderate, and 20 percent who report their lupus as being severe.

Living with lupus often means managing a laundry list of symptoms that require constant effort. Plus, stress can worsen symptoms. This often creates an ongoing struggle to maintain physical and emotional balance in order to feel as healthy as possible. With so much to manage, it makes sense that people often describe feeling out of control when it comes to their lupus.

Is your lupus under control?

To learn how members of our community are handling this balance, we asked our Facebook community to tell us: “Do you feel like your lupus is under control?"

More than 250 of you answered. Here is what was shared.

“I have too much emotional stuff going on right now.”

The vast majority of you replied no, you don’t feel like your lupus is under control. The biggest reason is stress. With everything going on in the world right now, it makes sense that many of you feel especially challenged by your lupus.

“No, but it used to be. I have too much emotional stuff going on right now.”

“Stress keeps mine up and down.”

“High stress has caused a major flare-up.”

“Some days are better than others.”

Others shared that you experience an ebb and flow with your lupus. Some days you are fine, and the pain is either manageable or nearly nonexistent. This is great news!

You might want to keep a journal to see if you can find what helps to keep your symptoms in check – it might be diet, sleep, or exercise. Keeping a food diary and exercise log may help you zero in on triggers and uncover what is helping you avoid stress and flare-ups.

“Not really. I get a day I feel good, then I am down for 3.”

“Some days are better than others. My anxiety is horrible.”

“Always feeling tired.”

The extreme fatigue that comes with most cases of lupus can be one of the hardest parts of this diagnosis. Sadly, it is unclear why tiredness is a symptom.

Thankfully, there are ways to manage fatigue. They include regular exercise and learning how to check in with your body so you can recognize warning signs before you reach exhaustion.

“Mostly. It would be great to get a good night of sleep and actually maybe feel rested. I mean FULLY rested.”

“No, I have everyday pain, and I am sleepy all day long. I feel fatigued.”

“Always feeling tired.”

“Nope. Fatigue is the worst.”

“My legs and hands are really bad.”

Most people with lupus know that pain, stiffness, and swelling often get in the way of good days. The fingers, wrists, elbows, knees, ankles, and toes are often affected. Many believe that inflammation is the culprit behind this pain. Managing inflammation with diet, medicine, and stress-management can help with these symptoms.

“I hurt badly every day. My lower legs swell and go numb constantly.”

“My legs and hands are really bad.”

“I have horrible muscle pain in my legs. But mostly in my right thigh. Grr!”

Thank you to everyone who shared their experiences for this story. We hope that members of the community feel connected when they see they are not alone in dealing with lupus.