Doctors Missed Her RA Symptoms. She Persisted—and Thrived
Brooke Baker toughed out two years with undiagnosed and untreated rheumatoid arthritis pain, but when her son was diagnosed with diabetes, it was almost more than she could bear. Almost. Get ready to shed some #HappyTears.
Brooke Baker was sleeping soundly one night in 2005 when suddenly she woke up with new and excruciating pain in both shoulders. "I remember it so well, and I had no idea what was going on," recalls the Oklahoma native, now 39. "The pain was like someone was injuring me, and I couldn't go back to sleep for hours."
In the agonizing days to come, a perplexed and frightened Baker swapped out her mattress and her pillow and would prop herself up to try and alleviate the unrelenting stabbing sensations.
“I just thought, ‘Well, it must be one of those things,’” she says. But then that “thing” moved to her elbows, the next week to her wrists, and a week later, to her hands. “I had never had any pain issues, and this all made me feel so debilitated.” Having such painful arms and hands was especially unfair. Baker had been a full-time music minister at church for three years, playing the piano.
Realizing the continuing torment was anything but random, she went to see her OB/GYN. After all, she was eight weeks into a “miracle pregnancy” at the time (she’d been told she’d never be able to have children). The last thing she needed was unexplainable pain.
“When I said: ‘Something's wrong,’ during that office visit, both the nurse and the male doctor I saw told me I should be grateful to be pregnant and basically to ‘suck it up,’” she says. Baker vowed to find a new OB/GYN, which she did four months into her pregnancy. At that point the pain was in every joint, from her neck to her toes.
“This doctor was a little gentler, he did really listen, but he was also a poor communicator,” Baker says. Because her symptoms were suspicious, the doctor did refer her to a local rheumatologist who ran some tests to confirm or rule out the possibility of rheumatoid arthritis (RA). That was the first mention that this disease could be the cause of her pain.
“The rheumatologist later called me to report the results showed nothing,” Baker says. “Later, he also told me it definitely wasn't RA and that RA gets better when you're pregnant.”
With her diagnosis still undetermined, the now-devastated and overwhelmed mother-to-be was in too much pain to work, so she quit and moved back in with her parents, because on top of all of this, her marriage had fallen apart.
“I was on the couch for almost seven months,” she says. “The pain got better for about six weeks, between months seven and eight,” says Baker. “I finally felt better and hoped I was over it all.”
Her Baby Arrived but the Pain Continued
It wasn't to be. The pain returned full force during her ninth and final month of pregnancy as she was also “getting huge,” she says. Almost sheepishly, she returned to her OB/GYN for pain relief. “I didn't want anyone, including him, to think I was crazy.”
That doctor told her: “When you have the baby, you won't hurt anymore.” Wrong: Her pain kept steadily increasing.
The calendar had flipped to 2006 now and the big day came to deliver. “A c-section was complicated by my previous abdominal surgeries and resulted in a longer hospital stay and blood transfusions,” Baker says. “But my baby boy, Jackson, was healthy and I was thrilled!”
Still, her intense joint pain persisted. How would she manage being a single mother? Her doctor then told her: “When you stop breastfeeding, you won't hurt anymore.” But when she stopped after a year, her pain continued on.
“I thought, ‘If I just tough it out longer, I'll be OK,’” she says. “I was pretty gullible, believing everything I was told.”
Then Her Son Got a Diagnosis of His Own
Being a single mom is hard enough—but fate would deal her another unlucky hand. Baker was worried: It seemed that Jackson, then 17 months old, was drinking constantly. Then one day he began stumbling, he couldn’t see normally, and he'd been losing weight. She knew something was terribly wrong.
A doctor visit and blood tests showed his blood sugar was more than 750 mg/dL when he was diagnosed with type 1 diabetes. (Normal blood sugar for a person without diabetes ranges from between 70 and 100 mg/dL.) Frequent urination, thirst, fatigue, and weight loss are common symptoms of the disease.
“He was too young to tell me what was wrong, how he was feeling,” says Baker. His behavior changes and voice gave her clues as she tested his blood sugar regularly.
Baker was in nursing school by this time, still living with her parents and not working, except to play music part-time at “a little, bitty job,” she says.
In those first stressful weeks after his diagnosis, “I'd stay up studying until 2 a.m., check my son, then sleep till 5 a.m. or 6 a.m. and then start it all over again,” Baker says, knowing it was all worth it, even though then, it all felt almost unbearable.
Her Son Got Help for His Illness. It Was Time to Get Help for Hers
“I went through the roof at that time,” Baker says, recalling seemingly insurmountable stress. Three weeks after her son's diagnosis, she finally saw her primary-care provider, where she wished she'd started, and tearfully confessed that she couldn't move her arms.
“I couldn't even lift my baby. I'd have to scoop him,” she says. “I'd spend 30 minutes in the shower, in the warm water, to help get my arms moving in the morning, because they were 'locked' at a 90-degree angle.”
The situation was terrifying. “The baby relied on me for everything—me, the single mother trying to do everything—and I could barely take care of myself. I couldn't open a baby food jar, and didn't feel safe bathing him alone,” Baker says. “Thank goodness for my mother. But this was about survival, and I had to go on.”
Her healthcare provider immediately did new blood tests for RA and he called Baker the same night to confirm positive results. "I was so glad to have an answer that I wasn't even devastated by that news," she says. The previously reported test results—the ones that ruled out RA while she was pregnant—must have been a mistake, she thinks now.
Her doctor quickly referred her to another rheumatologist who “didn't just mumble and grunt at me,” she says. “He prescribed medication, and I started it in December 2007.”
As for why Baker’s OB/GYN had earlier ruled out RA because her symptoms continued during pregnancy, which, he said, was not the norm—it turns out he was half right and half wrong.
The latest research in UpToDate, an evidence-based clinical resource, says approximately 50% to 60% of pregnant women diagnosed with RA do have improvement in their symptoms, usually starting in the first trimester. And no, it's not possible to predict which patients will improve and which will flare.
Even more specifically, a review recently published in The Journal of Rheumatology reported that disease activity improved in 60% of patients with RA in pregnancy and flared in 46.7% postpartum. The Arthritis Foundation says that may be because of the hormone and immune system changes that protect an unborn child may also help RA.
Her doctor started her on a disease-modifying anti-rheumatic drug (DMARD) right away. Progress was steady but slow: In fact, Baker’s joints throbbed when she started taking it. She'd feel good for a few days, and then after the next week's injection, the pain would return. “It took seven months before I started to feel ‘normal,’ again, but a year later I was pretty much functional and able to play piano again!” she says.
Baker has gone back and forth between pills and now-weekly injections, but the drug started on is still the one she's taking today. She feels so much better now that she shudders to remember the two miserable years she spent with no pain medication except acetaminophen.
“No one ever gave me any,” she says. “They just said: ‘Everyone hurts when they're pregnant.’”
"There Are More Good Things Than Bad Things"
Jackson, Baker’s now 13-year-old son, has clearly inherited his mother's indomitable, can-do attitude. “His spirit is undefeatable, and he just bounces back with a resiliency that's amazing,” Baker says of her son. “His hasn't been an easy life and he makes it look so easy.”
When Jackson doesn't feel well, he doesn't let it bother him. Instead he asks: "Can I go to school tomorrow?” Baker patiently explains that he should rest and asks him to pace himself.
She homeschooled him until fifth grade and he thrived when he eventually attended school. “He’s so motivated, just so driven, and wants to get into Harvard,” she says. “He’s also creative and talented and plays the lead in lots of school plays.”
Getting to this point has meant that—much like his mom—Jackson has had to overcome the awful moments that come with chronic illness. Baker recalls when, as a child, Jackson would say, “I don't want to be diabetes, Mommy.”
“That was just heart-wrenching,” Baker says. “Now he's so calm, and he says to me: ‘Diabetes isn't all that bad. There are more good things than bad things.’ That stumps me, and I just go blank, without a response.”
He has said he doesn't quite understand it all, about why he hurts and can't get better, and why she hurts, too. “He’s starting to assess when my hands and feet swell, and he says ‘I’m so sorry you have this ‘rheumatism,’” she says.
Baker doesn't dwell on “sorry,” but stays active. She is part of the Diabetes Patient Advocacy Coalition that advocates for more affordable insulin. She’s been to Washington, D.C. three times in 2018 and 2019 to lobby her legislators to decrease the price of insulin—and she intends to continue. As a partial result of the group’s nationwide efforts, the Insulin Price Reduction Act was introduced July 22, 2019.
With Her RA Mostly Under Control, New Goals Are Possible
Baker isn’t looking for a standing ovation, but she measures her life’s progress quietly every day, her eye firmly on the prize—and her goals.
With her pain controlled, and now her stress, Baker, who lives with her son, can focus on her accomplished life. She began that nursing degree in January 2008, around the time both she and her son were diagnosed with their diseases, and she finished in May 2010. Then in January 2019, she finished her master’s degree in nursing and now works as a professor at a local university teaching the next generation of nurses. She will pursue her Ph.D. next, with the goal of becoming a university dean. Then there are more personal goals.
“I want to be more active with my son when I can,” Baker says. “My body's getting physically stronger, and we're planning to do some runs together soon.”
And there’s travel. The pair plans to visit all 50 states. She's done 47, and Jackson has logged 10. Baker still plays music for therapy, not performing, but singing joyfully with her son in the car.
She’s relieved not to have to fight her body anymore. “I'm trying to work with it instead of against it,” she says. “I don’t accept it as: ‘Boy, I love having this,’ but it's better than hating it all the time.”
RA Reminds Her That Pain is Real, and Personal
Baker takes a whole-body approach to managing her RA. She consistently takes her medication—on time—and also likes to use essential oils for aromatherapy and for minor relief, applying them to her hands. To maintain her overall balance, she practices yoga, her favorite activity. She embraces deep breathing and calming apps on her phone, such as Calm and Headspace.
“I do my part, and because I have a spiritual side, I leave the rest because I can't control it all,” she says.
Baker remembers the time when doctors didn’t hear her when she reached out for help with pain and she felt sheepish about pressing them—not so now. She encourages others with chronic illness to speak up for themselves. “You’ll experience a real difference between advocating and not, and if you don’t find support in doctors you have, keep trying until someone really listens to you and works with you,” she says.
It's made her a better nurse, especially when a patient shares about their pain. She learned in nursing school that “pain is what the patient says it is.” Baker knows this firsthand. Those months of gritting through intense pain during her pregnancy could have been shortened if only someone had really listened to her symptoms and pushed for treatment. Now Baker is doing the listening (and teaching) and her patients are lucky to have her.
Pregnancy and RA: UpToDate. (2019) "Rheumatoid Arthritis and Pregnancy: Beyond the Basics." uptodate.com/contents/rheumatoid-arthritis-and-pregnancy-beyond-the-basics
Breastfeed or Not?: UptoDate. (2019) "Deciding to Breastfeed: Beyond the Basics." uptodate.com/contents/deciding-to-breastfeed-beyond-the-basics?topicRef=510
RA and pregnancy study. (2019). The Journal of Rheumatology. "Does Rheumatoid Arthritis Really Improve During Pregnancy? A Systematic Review and Meta-analysis." jrheum.org/content/46/3/245?ijkey=a2f460313707d4a774c7d5fc1125fe0cd1f0a68e&keytype2=tf_ipsecsha
RA and pregnancy article. (Date not specified). ""Rheumatoid Arthritis and Pregnancy." Arthritis Foundation. arthritis.org/living-with-arthritis/life-stages/pregnancy-family/pregnancy-and-rheumatoid-arthritis.php
RA treatment article. (Date not specified). "Rheumatoid Arthritis Treatment." Johns Hopkins Arthritis Center. hopkinsarthritis.org/arthritis-info/rheumatoid-arthritis/ra-treatment/
RA and essential oils article. (Date not specified). "Essential Oils: What You Should Know." Arthritis Foundation. blog.arthritis.org/living-with-arthritis/essential-oils-symptom-relief/