Learning that you have a chronic, life-altering disease like arthritis is challenging news to swallow, no matter what kind of arthritis you may have, how old you are, or what your other personal circumstances are. But not everyone takes the news the same way — and that may have a lot to do with the different ways people get diagnosed with arthritis.
It’s not uncommon for people to have arthritis symptoms for years — and in some cases, even decades — before getting an accurate diagnosis and treatment plan. Misdiagnoses along the way are common. According to recent data from our ArthritisPower research registry presented at the 2018 European League Against Rheumatism (EULAR) annual meeting, 96 percent of people ultimately diagnosed with ankylosing spondylitis received at least one misdiagnosis; nearly a third of respondents reported that it took more than 10 years to receive a formal diagnosisfrom when they began seeking medical attention. For 30 percent of people with psoriatic arthritis, it took more than five years to get diagnosed.
It doesn’t help that for most kinds of arthritis, there are few definitive yes/no tests, and there are more than 100 different types of arthritis. While getting an arthritis diagnosis can often be relieving in some ways — to have a name for your symptoms and an action plan for treatment, it can also leave you feeling like you still have more questions than answers.
If you’re feeling upset, confused, depressed, or anxious about your diagnosis, please know that you’re not alone. Check out these stories from men and women who’ve been in your shoes.
“It Felt Like I’d Just Gotten a Life Sentence”
Insomnia is bad enough on its own but not being able to sleep because of intense pain in my fingers and hands was weird and awful, says Angie K., 50. “A year ago, I found myself unable to rest because as soon as I laid down my hands would start throbbing,” she says. She tried to treat it on her own with special diets and herbs but after six months, it became too much to bear so she made an appointment with her family doctor.
At first, the doctors thought her symptoms might be due to rheumatoid arthritis, but all the blood tests and X-rays came back negative for RA. Her doctor referred her to a rheumatologist, who eventually diagnosed her with osteoarthritis in her hands.
“They said this was good news and bad news,” Angie says of that doctor visit. “The good news was that it wasn’t something worse. The bad news is that there is nothing I can do to stop, slow down, or reverse it and that all they could do was help me manage the pain.” Unfortunately, because Angie has only one kidney due to donating a kidney earlier in her life, she is unable to take most pain medications. “It was one of the worst days of my life. I felt like they’d given me a life sentence of pain. My medical options are practically non-existent,” she says, adding that she does the best she can with heat therapy and CBD lotions. (Read more about using CDB oil to manage arthritis pain.)
“Now, six months later, the shock is gone and I am resigned to it,” she says. “I have adapted to my new normal. I think our brains figure out how to not focus on the pain after a while.”
“For Four Years, Doctors Told Me It Was All in My Head”
Yon H., 20, was just 15 when she first started feeling joint pain. Even though the pain persisted on and off throughout high school, she wasn’t formally diagnosed until four years later. “I was sick of walking up stairs like a 90-year-old woman — my friends were always teasing me — so I went to the clinic,” the college student says. The doctor prescribed prednisone, a steroid. She gained 20 pounds in a month but her pain was completely gone and she felt better than she had in years.
“That was my turning point,” she says. “The doctor said that since I’d responded so well to steroids there was a good chance I had an autoimmune disorder.” He advised her to follow up with a rheumatologist. She did and several weeks later she finally had her answer: rheumatoid arthritis.
“People assumed I was going to be freaking out, but I was just so relieved to finally have answers,” she says. “For four freaking years doctors had been telling me that it was all in my head or was a sports injury, even though I didn’t play sports. Now I have an explanation for my daily pain and just knowing why helps a lot.” Her first step was to ask her doctor about treatment and she’s just started biologic medications, a treatment plan she’s very excited about.
“I Thought I’d Just Pulled a Muscle at the Gym”
Two months ago Sam L., 42, was lifting weights at the gym when he felt a pop in his hip. Thinking it was just a mild injury, he went home and did the standard ice-and-heat treatment. But not only did his pain not improve, he began having muscle spasms in his legs and feet as well. Eventually it became difficult to even walk. After three weeks of pain, he finally made an appointment with his general doctor.
“My doctor said I’d probably dislocated my hip and sent me for X-rays. When the scans were done they found not only a dislocated hip but arthritis in four places on my spine and in my hip,” he says. “Shocked doesn’t even begin to describe what I felt. I’d always tried to live a healthy lifestyle and never had any real health problems before that, and now I have a chronic disease. Like, what?”
Sam was referred to an orthopedic specialist who diagnosed him with ankylosing spondylitis and recommended surgery — an idea he’s not comfortable with yet. “It’s all very recent so I’m still weighing my options for treatment,” he says.
“It Started with a Common Cold”
“Who knew a dumb cold could trigger arthritis? But that’s exactly what happened to me,” says Max P., 28. Her struggle with arthritis started with a slight fever, sore throat, runny nose, and a cough. It felt like every other cold she’d had — until it didn’t let up, and her knees and ankles started to swell and hurt. Soon her hands and feet were so swollen she could barely function and her skin had taken on a scaly appearance. But perhaps the strangest symptom were her problems using the bathroom — peeing felt impossible. Her primary care doctor diagnosed her with reactive arthritis, a type of arthritis that is triggered by a viral infection and can cause inflammation throughout the body.
Sometimes the inflammation can resolve on its own, she was told, but sometimes it can become chronic. When hers didn’t go away after a month, she made an appointment with a rheumatologist. Her blood work came back positive for HLA-B27, a genetic marker that can indicate several types of autoimmune arthritis, including reactive arthritis.
“He told me at that point it didn’t matter so much exactly what type of arthritis I had as much as accepting the fact I had it,” she says. “And that was the hardest part for me. I’m not old, it’s so frustrating to feel like I am.”
The doctor eventually found signs of arthritis in her spine as well and put her on methotrexate and prednisone, which has brought significant relief.
“It’s been a few years. I still have arthritis. Some days it’s a lot worse than others but I’ve learned to deal with it and am mostly back to my regular life now,” she says. “I think I’m luckier than a lot of people.”
“I Was Misdiagnosed 7 Times”
Rock climbing, hiking, and backpacking were Jack H.’s favorite things to do. Then in 2013 came a fateful backcountry hike that changed everything.
“We were out in the woods when my heel started to really ache. I hiked out but by the time I got home my foot was throbbing. I thought I’d probably strained my Achilles tendon,” Jack, 39, explains.
His doctor agreed and told him to ice and rest it. But as the pain and swelling spread through his foot and then his knee, it became apparent something else was happening. Over the next two years, he saw dozens of doctors, getting diagnosed erroneously seven times, with everything from bone spurs to stress fractures to depression.
“By this time, I’d gone from super fit to barely able to move around my office at work. The pain had spread up through both legs, my hips, and my back,” he says. “So yeah that was definitely depressing. But I knew that wasn’t the reason for my pain.”
Finally he saw a rheumatologist and tested positive for rheumatoid arthritis. His doctor started him on methotrexate but while it helped with the pain and swelling, he says his other symptoms like brain fog and arthritis-related fatigue only got worse. A year later, a friend introduced him to the “autoimmune protocol diet” and he decided it couldn’t hurt to try it. He ditched all grains, alcohol, processed foods, and sugar.
“It was like night and day. In the four years since then I’ve been able to go off all my meds and I’m almost entirely symptom free,” he says. “I’m not saying I’m cured or anything, I definitely get flare-ups if I do have a few beers, but it helps me manage my RA.”
[Note: CreakyJoints encourages everyone with inflammatory arthritis to talk to a rheumatologist about the finding the right treatment plan for them. These diseases can cause underlying damage to your joints, bones, and organs even if some symptoms improve. Prescription medications are often at the core of treatment due to the strong evidence supporting their success.]
“Who Knew Dandruff Could Be Arthritis?”
Constant pain throughout her body. One swollen finger. Debilitating exhaustion. Memory problems. Oh, and a peeling rash on her scalp that seemed to rain dandruff. These were the strange symptoms that sent Mackenzie M., 37, to see a doctor.
“I just felt so awful, all the time, and nothing seemed to help,” she says. Her doctors cycled through several diagnoses including Lyme disease, fibromyalgia, and Crohn’s disease. But after two years of treatments had no effect and her foot also became swollen, they finally sent her to a rheumatologist, who diagnosed her with psoriatic arthritis.
“It was ironic because the rash on my scalp was always dismissed as ‘Oh, you have dandruff’ or ‘that’s not related’ but it really was the key to getting properly diagnosed,” she says. “It turned out my ‘dandruff’ was actually psoriasis.” (Here are psoriatic arthritis symptoms to never ignore.)
That day was five years ago but Mackenzie can still remember exactly how she felt. “I was relieved because we’d ruled out rheumatoid arthritis, lupus, and multiple sclerosis but I was panicking because I didn’t even know what psoriatic arthritis was and it sounded scary,” she explains.
Now, however, she feels pretty calm about her disease. She’s on a prescription NSAID and feels good knowing that they caught it before it did any damage to her joints. Plus, “there are a lot of treatments coming out and my rheumatologist says I’m a good candidate for them,” she says.
“I Got Diagnosed as a Baby”
“When I was just a baby my mom noticed that I hardly ever turned my head and mentioned it at my checkup. The doctor said he thought it was a muscular imbalance but my mom insisted on having it checked,” says Jocelyn S., 23. And it’s a good things she did: Jocelyn was just a year old when she was diagnosed with juvenile arthritis.
The arthritis appeared to affect just her neck at first but by elementary school she was having problems chewing, which eventually lead to surgery on her jaw joints. Although she says she experienced frequent bouts of pain and swelling, middle and high school went pretty normally. (Here’s how to tell the difference between juvenile arthritis and growing pains.)
“Sometimes I had to get my knees drained but overall it didn’t seem like a huge deal,” she says.
However, in college her disease progression suddenly sped up and now she has trouble walking. Occasionally she needs a wheelchair on really bad days. Her doctor says she is looking at a double hip replacement in her future.
“I’ve tried every drug in the book and eventually they all stop working or I develop a reaction to them,” she says. Still though, she finds ways to keep her spirits up, going to concerts and hanging out with friends.
“Honestly arthritis is all I’ve ever known so I’m not too sad about it because I don’t have anything to compare it to,” she says. “I just try to live my life and not worry about the future.”