Women in their 20s and 30s are busy—they’ve got kids and jobs and stress. So when they feel tired, or achy, they tend not to think much about it. Too many times, women write off these symptoms as unimportant. But autoimmune (AI) diseases affect twice as many women as men, and they often begin to show up mid-life.
“When I was seven months postpartum with my son, things starting getting weird. I had headaches, I’d get dizzy. When I had really bad pains in my hands and wrists— I thought they were carpal tunnel from holding him,” said Betsy Lavin, 43, from Williamsburg, Virginia.
In Betsy’s case, it was more than that. Her symptoms of fatigue and joint pain piled up, but she thought it was normal new mother stress.
“People said, ‘you’re just worn out’ and ‘hang in there, it’ll get better.’ It sounded like what other people were going through,” Lavin says.
A few months after having another baby, she went to the store by herself and lost her vision in one eye.
She needed to find out what was really going on. She went to an ophthalmologist, who couldn’t find any reason for her temporary vision loss, so he referred her to a neurologist. Some of her symptoms seemed like multiple sclerosis.
“Everyone was hesitant to say that’s what it could be. Even after [seeing the] neurologist, there was a long lag time. I had a lot of symptoms, some fit with MS and some don’t,” Lavin says.
Lavin suggests that anyone experiencing unusual symptoms keep a journal. “Write everything down. ‘This happened, at this time.’ Write how long it lasted and where in the body it happened. Note all the weird stuff. You may not know if anything is related, but it helps to tell your doctor ‘this is what’s going on,’” she says.
She shares her notebook with her doctors, who now include a neurologist and rheumatologist, and it helps her remember the details. Over the years, doctors have told Lavin she has MS, but also rheumatoid arthritis, fibromyalgia and Crohn’s disease.
According to the National Institutes of Health, AI diseases include more than 80 diagnoses, and affect more than 25 million people in the United States. There is evidence of a genetic link, with AI diagnoses clustered in family groups.
Autoimmune Symptoms Often “Don’t Fit in a Box”
Characterized by an over-exuberant response when the immune system begins attacking the body, it’s not uncommon for people to have more than one autoimmune disorder, which makes recording symptoms even more valuable. The intermittent symptoms can make understanding what is happening even more challenging.
“I have a constellation of autoimmune disorders. RA and MS can cause pain. A lot of them coexist—Crohn’s and RA happen a lot together,” Lavin says. “What I have doesn’t fit in a box…which is so frustrating.”
Dr. John Dye, a rheumatologist at Sentara Rheumatology Specialists, agrees that the diagnosis process for autoimmune diseases can be tricky.
“There are lots of reasons for fatigue and achiness. That’s why we always do a thorough history and physical exam with our patients. We have to be good listeners,” he says. “To put together a potential diagnosis takes a lot of time and patience.”
Dye says it’s always worth talking to your physician about your symptoms—even if it’s not an autoimmune disorder, it could be post-partum depression or fibromyalgia.
“Management with a health care professional will give you better outcomes than on your own. Certainly if there are classic symptoms—like a rash, chest pain or joint pain, come in and discuss your symptoms,” Dye says.
Although autoimmune disorders can be harder to diagnose because there are not a lot of definitive tests, there are continuing strides in the diagnostic and therapeutic developments.
“There may not be a firm diagnosis after the first visit. But you should come in sooner rather than later. The field has changed dramatically—therapies have improved and outcomes are better,” Dye says.
Dye specializes in rheumatology, and says that rheumatoid arthritis is characterized by a pattern of pain in the joints of hands and wrists, usually symmetrical.
“Patients who end up with an RA diagnosis often tell me that they have morning pain and stiffness—it lasts maybe an hour,” Dye says.
What Is It? Until a Diagnosis, Hard to Say
Knowing the signs that are beyond everyday symptoms are helpful, especially for people with a family history of autoimmune diseases, such as the butterfly-shaped face rash that often is a sign of lupus.
The rash didn’t appear for Ramie Lodwick, 40, the founder of the Faces of Lupus support group, so it took several years for her to be diagnosed. She had three kids—and she was tired all the time. She thought she had carpal tunnel from her job as a nurse. But after surgery on her wrist, it didn’t get better. The pain spread to her head, hips and legs, which she found strange. One day, she had a tonic-clonic seizure.
“Kudos to my primary care physician. In a flare, you don’t know what’s going on. They help you through that, but it still took more than three years of testing to figure out what it was,” she says.
For Lodwick, finally having a diagnosis helped her begin to ask for help, and she says it makes it easier to ask for support.
Besides stretching, eating well and getting enough fluids, Lodwick says it’s important to “find your people.” She started the support group to help talk about lupus, educate others and to give family and friends ways to help support people with lupus. She also had Raynaud’s syndrome, another autoimmune disorder, and fibromyalgia.
Just Life? Or Something More?
Jae White, 57, was once the “queen of denial” but today she’s “queen of the workaround.”
More than 30 years ago, she had her first exacerbation of MS. After a road trip, she figured her stiff fingers were a result of white-knuckled driving in bad weather. But it lasted for weeks and she grew concerned.
“I could feel things with my fingers but they felt numb inside. Friends convinced me to go to urgent care and they suggested that I had the traditional symptoms of carpal tunnel,” White says.
She saw an orthopedist, who poked her fingers with a paper clip to see if she could feel it. After weeks of this, she quit going and tried to shake it off. “I was so frustrated…I should have gone somewhere else. MS never entered my brain. I just dealt with the pain. I still have numbness and tingling to this day but I can live with it,” she says.
White continued at a busy pace, working more than one job and ignoring her fatigue and other symptoms. Her actual diagnosis didn’t come until 12 years ago, after most of her right side went numb. She had a spinal tap and then a swift confirmation of the diagnosis of MS.
“My advice to others is don’t be afraid to ask questions. If you don’t feel the doctor is giving you the answers, find another one,” she says.
She also cautions people to be careful about what they are reading about their disease, because it’s important to make sure it’s from reliable sources.
One of the largest challenges for people living with autoimmune disorders is that their disease involves many different systems of their body, and specialists must coordinate with a variety of different symptoms. Given the layering of diseases and symptoms that can be a result of stress, it can be a complicated and tangled process.
“’Is it life, or is it MS?’ I ask myself that a lot,” says White.