Carly Lemmon’s symptoms kicked in at such a young age, she doesn’t even remember them.
“My mom was the one who told me I experienced horrible back pain when I was just 5 and 6. Apparently, I was constantly getting sick and had really bad fatigue,” says the San Diego-based aspiring science writer who is currently completing a master’s degree in cell and molecular biology. “Doctors said I was ‘too young,’ ‘making it up,’ or ‘just needed to exercise more,’” she says. “Can you imagine telling an active child to exercise more?”
In grade school, Carly recalls “trying to keep up with the kids in phys ed, thinking everybody else felt the same way as me. I was so little at the time I didn’t realize what I was feeling was unusual.”
By the time Carly was in eighth grade, doctors said there was nothing wrong with her back, but perhaps she could benefit from wearing a neck brace full time to improve her posture. “It was so frustrating to be told nothing is wrong, and we don’t know if this is going to fix it, but you can try to wear a full brace,” she says.
Physical Therapy led to an ‘Aha Moment’
Without answers, Carly tried to live with her symptoms until they nearly broke her. As a 19-year-old sophomore at Point Loma Nazarene University in San Diego, California, she was plagued by horrific body aches, joint pain, fatigue, and rashes that would come and go on different parts of her body.
“I felt like I couldn’t move, and then I started to get stomach upset. I thought the symptoms stemmed from separate issues, so I went to a physical therapist about my back pain. I went to my primary care doctor about my stomach issues. And I saw other doctors about the rashes.”
Then, a breakthrough: Sarah, Carly’s physical therapist asked her to write down every symptom she had ever had, even if they seemed unrelated. When Carly came back with her list, Sarah was stunned.
“Carly,” she said, “this is not normal. People don’t experience all these symptoms. And you shouldn’t be in this much pain all the time or have such extreme fatigue.” She suggested Carly see an allergist for her rashes and stomach pain. After ruling out allergies, the allergist suspected a rheumatic disease like fibromyalgia, rheumatoid arthritis, or lupus, and referred Carly to a rheumatologist.
Finally, a Diagnosis
After listening carefully to her history and ordering a panel of blood tests, the rheumatologist got to the bottom of Carly’s distress. It was lupus, an autoimmune disease in which the immune system attacks healthy tissues in the body, leading to a wide range of seemingly unrelated symptoms, such as muscle and joint pain, rashes, chest pain, sun or light sensitivity, kidney problems, fatigue, and more.
Although lupus can’t be cured, it can be managed with medications and some lifestyle changes. Treatment can help people with lupus avoid serious complications, such as heart attack and stroke, kidney failure, and permanent joint damage.
“I felt really relieved that something was actually wrong because I had been told my whole life that nothing was wrong, that it was in my head or that it couldn’t be that bad — now, finally, I had a name for it,” says Carly. “I immediately looked up lupus and learned the science behind it all. I got a lot of comfort learning about it.”
Medication Helped — But Not Enough
Carly was flaring badly at the time of her diagnosis, and Dr. Malinak prescribed prednisone and hydroxychloroquine, a first-line medication used for lupus-related pain and inflammation, flares, and complications. Hydroxychloroquine is a mainstay of lupus therapy because it’s a relatively safe, effective, and inexpensive therapy.
Although the treatment brought the flare under control, over the long term, it didn’t quite bring the relief Carly hoped for. Despite adding the biologic drug belimumab (Benlysta) and an nonsteroidal anti-inflammatory NSAID medication to her hydroxychloroquine regimen and being mindful of her health — staying active and eating well — she was still in a lot of pain every day.
A UTI Was a Missing Puzzle Piece
Then, during a routine appointment with her rheumatologist, Carly mentioned she had a suspected urinary tract infection (UTI) and was still waiting for the results. “He looked at me like a light bulb went off in his head and asked me to describe what I had been experiencing,” recalls Carly. “When I told him about my bad bladder pain, he explained that a bladder syndrome called interstitial cystitis is common in fibromyalgia and can be really severe. He said that if my UTI culture came back negative it was a sign I probably had fibromyalgia.”
As it happened, the culture did come back negative — and Carly turned out to be among the 25 percent of people with lupus who also have fibromyalgia, a chronic disorder that causes widespread pain and tenderness.
This additional diagnosis explained the back pain, the sleepless nights, the lingering fatigue. “All the missing pieces of my mystery story started to add up,” says Carly, who is now taking medication (an antidepressant) for her fibromyalgia. “I think I’ve had undiagnosed fibromyalgia most of my life.”
The Fibromyalgia Diagnosis Flipped my World
“When I got diagnosed with fibromyalgia, I felt an identity crisis — I’m ‘Carly with Lupus.’ I do advocacy work for lupus patients, how does this fit into my story?” says Carly, who posts on Instagram @ChronicallyCarlz.
Eventually, she came to terms with it. “A new diagnosis always means new solutions and new treatment options and a chance to get better,” she says. “I would rather find out I have fibromyalgia than hearing I have lupus that is not controlled with the only treatment options available. I’m living with hope.”
Tips for Managing a Chronic Illness
Here, Carly shares her top strategies for managing her chronic illnesses and feeling her best:
Find an all-around amazing doctor
“My doctor is like a second dad to me,” says Carly of her longtime rheumatologist. “We tease each other, we have a good rapport, and he respects me. When I didn’t like a recent lab result, I said, ‘Y’know, doc, I’m concerned about this particular thing, and I want to do these labs,’ and he said, ‘Okay, I’ll write it up.’ He works with me — that’s a huge thing I’m passionate about.”
Sit with your body and listen to it
For Carly, that means doing a self-assessment as she sips her morning cup of coffee or tea. She asks herself:
- Okay, how tired am I?
- Is it normal tiredness or is it fatigue?
- If it’s fatigue, how much? Is there also pain?
- What can I do to control that pain?
Carly says that learning what your body can handle — which changes on any given day— “sets you up for handling your disease and helps keep you emotionally balanced as well.”
If she has plans with family or friends, this ritual helps her communicate to herself and others how long she can be out and what activities she can and cannot do. “If it’s something I really have to do, I can communicate how I’m feeling so others can help me.”
Approach doctor appointments as if they were a business meeting
“Before an appointment, I write down what I’m looking to achieve. I think of it as a business meeting, with an agenda,” says Carly.
- I’m wondering about a new treatment
- I’m wondering if my current treatment is really working
- I’m interested in having this test
She also recommends maintaining a neutral, unemotional tone: “A lot of people shy away when talking to medical staff; they second-guess themselves and settle for a lesser standard of care. When you go in with a matter-of-fact tone, you feel more confident and you’re more likely to ask your questions and say what you want to say. It takes the personal fear out of it.”
Another important insight: “I’m always worried about people liking me, and you have to throw that way,” urges Carly. “It’s not about the doctor liking you; It’s about the doctor taking care of you.”
Practice soothing self-care
Lupus is associated with rashes, and Carly has developed a skin-care routine that pampers and soothes. “I wash my face with a super-mild soap, put on a toner because it feels fresh, and then apply moisturizer,” she says. “But something I do that helps if I’m in a lot of pain or feeling fatigued is put on my makeup. It’s a low-energy activity that makes me feel good and elevates my mind a little bit. It gives me an extra push that helps me get through what I’m feeling.”
Move — even a little bit — even if you feel you can’t
“Exercise really does help,” says Carly. “Even if you have to do stretches in your bed, do those.” Sometimes, when she feels as if she’s so weak she ‘can’t do anything,’ she will do a task like change the water in her fish tank — “It’s a big heavy thing of water” — or do 20 squats. “Meet your body where it’s at, but always meet it.”
Become a master delegator
Part of Carly’s prep for her October 2020 wedding to husband Carl (yes, they’re Carly and Carl!) included doing everything she could to avoid a flare — and that meant asking for help. “I said, ‘You guys, I can’t flare for the wedding day. I need your help.’ Instead of worrying people would think of me as a burden, I became a ‘Yes-you-can-actually-help-me type of person!’”
If asking for help remains a struggle for you, Carly has this advice: “Think of yourself as your best friend. What would you want for your best friend? Would you be willing to pick up some groceries? Help with errands? The answers are most likely going to be ‘Yes.’ Ask your circle of people for help when you need it. It gets easier over time.”
Be a More Proactive Patient with ArthritisPower
ArthritisPower is a patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. You can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and share with your doctor. Learn more and sign up here.
Lieber, S. Lupus and Fibromyalgia. Hospital for Special Surgery. https://www.hss.edu/conditions_lupus-and-fibromyalgia.asp#:~:text=Fibromyalgia%20is%20a%20disorder%20that,have%20lupus%20also%20have%20fibromyalgia.