Autoimmune Disease & Peripheral Neuropathy

Peripheral Neuropathy is a common complaint among autoimmune patients. Image courtesy of the Southern Regional Pain Services.

Did you know that autoimmune disease can cause debilitating nerve pain and other nervous system difficulties?

Many medical professionals are unaware that autoimmune conditions can cause a variety of neurological symptoms, or neuropathies, in patients. Though it is commonly known that autoimmune diseases are responsible for joint pain and other kinds of inflammation, nerve pain is often overlooked.

According to the National Institute of Neurological Disorders and Stroke, peripheral neuropathy refers to conditions that involve damage to the peripheral nervous system, which is the vast communication network that sends signals between the central nervous system (the brain and spinal cord) and other parts of the body. Research has shown that over 20 million Americans suffer from some form of peripheral neuropathy, of which there are over 100 known unique types!

How can autoimmune disease cause peripheral neuropathy?

Systemic autoimmune diseases that impact the entire body can cause peripheral neuropathy because of the impact these diseases have on one’s nerves. Conditions like Type 1 diabetes, lupus, Sjogren’s syndrome, and rheumatoid arthritis can all cause nerves to become compressed or entrapped as a result of inflamed surrounding tissues.

Some autoimmune diseases aren’t systemic, or body-wide, but rather, target the nervous system directly. For example, in autoimmune conditions like Guillain-Barre, multiple sclerosis (MS) and chronic inflammatory demyelinating polyneuropathy (CIDP), the immune system may go after the motor nerves, motor fibers, or the myelin sheath coating the nerves. In other instances, the small fibers are attacked, resulting in ongoing chronic pain.

How does peripheral neuropathy manifest?

Peripheral neuropathies can manifest for different people in different ways. For example, rather than a sharp, jabbing, throbbing pain, for some patients it may feel more like prickling, tingling, burning, numbness, or even a complete loss of sensation.

According to the Mayo Clinic, peripheral neuropathy can also make you feel like you’re having a sensation that you’re not; for example, feeling like you’re wearing gloves or socks when you’re not. Peripheral neuropathies can also cause you to feel pain for activities that you know shouldn’t cause pain, such as pain in your feet after they’re underneath a blanket.

What you can do about your autoimmune nerve pain

Medical Interventions

If you have autoimmune nerve pain, don’t suffer in silence. Talk to your primary care physician and see if they can refer you to a neurologist or chronic pain specialist. From there, your physician can help put together a treatment plan to ease your pain.

I have Sjogren’s syndrome and for a period of 7+ years, chronic pain was a regular part of my life. My rheumatologist prescribed me all kinds of joint pain medications, from plaquenil (generic name: hydroxychloroquine) an anti-malarial drug, to prescription-strength nonsteroidal anti-inflammatory drugs (NSAIDs), steroid medications, and even chemotherapies! It wasn’t until my pain was identified as nerve pain, not joint pain, that I was able to switch to a medication that worked to reduce my peripheral neuropathy.

In addition, I worked with a neurologist to determine that I had a co-morbid condition, called benign fasciculation syndrome, which was also contributing to my pain. This is important, because many chronic pain sufferers have co-morbidities, like fibromyalgia, which can increase your pain levels or even be the real driving force behind it.

Lifestyle Considerations

Beyond medications, your lifestyle is also an important component of reducing your neuropathic pain. Vitamin deficiencies, for example, have been identified as a cause of peripheral neuropathies. This is because certain B vitamins, including vitamins B1, B6 and B12, as well as vitamin E and niacin, are crucial for maintaining nerve health. Since alcoholism can result in serve vitamin deficiencies, avoiding substance abuse is also key.

Exposure to certain toxins or poisonous substances, such as lead and mercury, can also impact your nerves and cause resulting pain. Finally, trauma and pressure on the nerves can cause neuropathies as well, so alleviating pressure on your nerves, such as decreasing repeated motions on the parts of your body experiencing pain, is important.

Do you have an autoimmune condition(s) and suffer from peripheral neuropathy? What do you do to cope with your chronic pain? Let us know in the comments below!

Pro Tennis Player Caroline Wozniacki Describes Battle with Rheumatoid Arthritis

Caroline Wozniacki, a professional Danish tennis player, found herself embroiled in a match against her own immune system

From Grand Slam Champion to Bedridden

Caroline Wozniacki, a professional tennis player and Grand Slam champion from Denmark, was at the top of her game in 2018. At 27 years old, she had just finished playing in the Wimbledon, when she found herself feeling extremely ill.

“After Wimbledon, I just feel like I had the flu and wasn’t feeling well. I took some time off from tennis and training in the gym and was just going to relax, but I wasn’t feeling better. So I decided to go back to training and to see what happens,” the now 30-year-old tells Health in an exclusive interview.

She continued to play in tournaments across North America, but only continued to feel worse, and ended up having to withdraw from the Washington Open in Washington, DC as a result. “Day to day, I felt exhausted and was dizzy on the court,” Wozniacki explained. “I also had pain in some joints.”

Unbeknownst to fans, Carolina Wozniacki was battling an undiagnosed autoimmune disease through the later part of her tennis career

At the next tournament—the Rogers Cup in Montreal—Wozniacki was devastated to lose her first-round match. She put the loss behind her, though, and decided to focus her energy on preparing for her next match in Cincinnati. The following morning, however, Wozniacki couldn’t even move her arms or hands.

“I was in so much pain and felt exhausted. I went to see a doctor, because I felt extreme pain in my shoulders, elbows and hands,” she recalls. Her joints were swollen, but since her doctor didn’t see any damage to her ligaments, she chalked her pain up to her demanding travel schedule and athletic regimen. Strangely enough, her vocal cords were also inflamed and her voice became raspy.

Her symptoms continued to worsen, and because doctors couldn’t determine the cause, “They said, ‘Maybe you’re in bad shape. Maybe it’s mental. Maybe you’re pregnant.’ They basically called me crazy,” Wozniacki said. She found it extremely frustrating, especially considering she was in tip-top shape and had just won the Australian Open and a Grand Slam title the year prior. “I was 27 years old and the number two tennis player in the world. I’m in great shape and eat well. I do all the right things,” she lamented.

She insisted on getting multiple blood tests and consulting with various specialists. Finally, it was when she visited the fifth doctor in New York City, that it was discovered through a blood test that she had an autoimmune disease. However, it wasn’t clear which autoimmune condition she had. After a series of additional tests, she was finally diagnosed with rheumatoid arthritis (RA), a chronic inflammatory autoimmune disease affecting one’s joints.

Life After an Autoimmune Diagnosis

After being diagnosed with RA, Wozniacki is determined to live a full life

Wozniacki says that to her knowledge, she has no family history of RA or any other autoimmune disease. From what she understands, the condition could have been triggered due to her exhaustion and her immune system being compromised. Now, she keeps her RA symptoms under control through conventional pharmaceutical treatments, combined with lifestyle tips like consuming a healthy, anti-inflammatory diet and maintaining a consistent exercise routine. She also believes in getting enough quality sleep and avoiding stress in order to prevent arthritis flares.

Though the diagnosis was shocking, Wozniacki was determined to continue playing tennis, and even went on to play in the US Open and the China Open, where she won one of her biggest tournaments. She has since retired from playing tennis professionally, and now works to encourage other women living with chronic inflammatory diseases to share their stories through the Advantage Hers campaign.

Wozniacki describes her struggle with rheumatoid arthritis (RA) as part of the Advantage Hers campaign.

“It takes a long time for a lot of women to get diagnosed, and a lot of doctors don’t take their symptoms seriously at first because autoimmune diseases aren’t on a lot of doctors’ radars. I want women to know that if they have pain in the joints and feel exhausted, they should talk to their doctors about getting tested for RA or other autoimmune diseases,” she says.

Finally, Wozniacki credits her family for helping her to get through the difficulties of living with a chronic invisible illness. That being said, she also believes it’s important to connect with others living with the disease; “I really think it’s important to be able to speak to other people going through the same thing you are. It really makes a difference,” she said.

To learn more about Carolina Wozniacki’s journey with RA, check out the Advantage Hers campaign and share your own story on social media with the hashtag #AdvantageHers.

What is Medical Gaslighting?

“Maybe it’s just all in my head?”

That was the question Isabella Rosario asked herself after unsuccessfully trying to get a diagnosis for her numerous debilitating symptoms for over a year-long period. These concerning symptoms included migraines, joint dislocations, chest pain, lightheadedness, pneumonia and more. When she first saw a doctor at her university clinic, and later, her GP, she was told what she was experiencing was due to stress related to her studies, and completely psychological in nature. Eventually, after seeing numerous specialists, she was diagnosed with two chronic health conditions – hypermobility spectrum disorder (HPD) and postural orthostatic tachycardia syndrome (POTS). 

Isabella was fortunate to eventually get a diagnosis, but other chronic illness sufferers are not so lucky. Many medical professionals routinely dismiss their patients’ ailments and concerns – a phenomenon known as medical gaslighting. Eventually, patients who have been gaslit will begin to question their own sanity and wonder if their health problems are actually ‘real’ or just a figment of their own imagination.

According to the blog A Journey Through the Fog, medical gaslighting can take many forms, including:

  • Minimizing debilitating or dangerous symptoms. – “Your pain can’t be that bad
  • Blaming symptoms on mental illness. – “It’s all in your head” 
  • Assuming a diagnosis based on sex, race, identity, age, gender, ethnicity or weight. – “If you lost weight, your symptoms would disappear
  • Refusing to order important tests or imaging work. – “I know you don’t have [condition], I do not need an MRI to tell me this. I know how to do my job
  • Refusing to discuss the health issues with the patient. Berating patients for trying to self-diagnose. – “Who’s the doctor here, me or Google?” 

Throughout the course of my journey to being diagnosed with various autoimmune diseases and chronic illnesses, including Sjogren’s Syndrome, Hidradenitis Suppurativa and Benign Fasciculation Syndrome, my symptoms were either minimized or completely discounted by medical professionals. As I detail in the blog post, When Your Doctor Doesn’t Believe You, when I first brought up joint pain in my hands to my GP at age 19, he accused me of ‘texting too much’ when in reality, I had undiagnosed Sjogren’s Syndrome that was quickly developing into Rheumatoid Arthritis (RA).

In another instance, I needed a referral to see a Rheumatologist. When the nurse checked me in and asked about the reason for the visit, she said, ‘How does someone your age need to see a Rheumatologist? Did you wear high heels too much in high school?’ This kind of comment is not only rude and uncalled for, but patronizing and dismissive as well. People of all ages can experience a myriad of health issues, and should be taken seriously.

Last year, a video posted by a nurse on the popular social media platform TikTok drew outrage among the chronic illness community. The video featured a nurse imitating a patient struggling to breathe, while the nurse refused to help. She then captioned the video with the words: “We know when y’all are faking’. The video prompted many chronic illness patients to respond recounting their own stories of medical gaslighting, using the hashtag #PatientsAreNotFaking.

According to healthline.com, women are more likely to have their pain described as ’emotional’ or psychological in nature. Meanwhile, patients of color are less likely to be thoroughly examined as compared to their white counterparts. This systemic sexism and racism in the healthcare industry was also pointed out by many using the same hashtag:

In order for patients to get the healthcare they need (and deserve), medical professionals need to take their patients seriously; and that includes listening to their experiences, being compassionate, and issuing the necessary examinations and other tests needed to get an accurate diagnosis. My hope is that if you’ve ever experienced medical gaslighting, that you remain assertive and find a healthcare team that will take the necessary action to diagnose and treat your illness.

Have you experienced medical gaslighting before? If so, comment below to share your experience.