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!

April is Sjogren’s Awareness Month; Read My Story

Hello Autoimmune Warriors! I hope you’ve all had a great start to April, despite the coronavirus pandemic that we all find ourselves in. April is actually Sjogren’s Syndrome awareness month, and as such, I wanted to share my own story battling this autoimmune disease here on the blog as well as on social media.

Name: Isabel

Current age: 27

Age when diagnosed: 20

City/State: San Diego, California

Please finish with the following sentence: “Since I was diagnosed with Sjögren’s, I have learned…”

…that self-care is extremely important when you have a chronic illness. After I was first diagnosed, I continued to push myself physically, academically and professionally the way I would have pre-diagnosis. But it’s really important to listen to your body and take it easy sometimes, even if that means it will take longer to accomplish your goals.

What are your most difficult symptoms?

Right now, joint pain, particularly in my hands, is my most challenging symptom. However, eye and mouth dryness, fatigue, and brain fog have been difficult for me as well.

How has Sjögren’s affected your life and how have you been able to effectively cope with the complexity of symptoms?

It takes me longer to accomplish tasks than it did before, due to chronic pain and fatigue. I have to go to the dentist a lot to take care of my oral hygiene, and I see different specialists for each of my symptoms. I also take various medications to cope with symptoms like dryness and joint pain. Other than taking medications, I cope with the symptoms by connecting with others living with the disease on social media and through my blog, autoimmunewarrior.org.

What do you wish people knew about your Sjögren’s?

It’s not just dry eyes and mouth, and even those symptoms can be debilitating if they’re severe enough. This disease involves the whole body, and it’s a lot more than just a small ‘nuisance’, which is what it’s often portrayed to be.

Given recent global events amid the coronavirus/COVID-19, do you have any specific concerns because of Sjögren’s? 

As part of my treatment plan, I take immunosuppressant medication, which I’m afraid puts me at greater risk of not being able to fight off an infection, like COVID-19, if I were to catch it.

What’s your best Sjögren’s tip?

Find a team of medical professionals, including a rheumatologist and dentist, who are knowledgeable about Sjogren’s and have experience treating this disease specifically. Unfortunately, based on personal experience, I’ve found that few medical professionals are truly educated about the impact that Sjogren’s has on patients, so it’s important to connect with those that really understand the complexity of the disease and how it manifests.

Thank you for reading my story! If you’d like to learn more about how I was diagnosed with Sjogren’s, please visit the following article: My Struggle with Autoimmunity: Part 1.

If you’d like to share your own story, please visit the This Is Sjogren’s webpage on the Sjogren’s Foundation website to learn how you can be a part of the #ThisIsSjogrens awareness campaign.

How One Woman Lives Her Best Life Battling Two Autoimmune Diseases

Lisa Diven, a lifelong athlete, has battled two aggressive autoimmune diseases

Lisa Diven was a 23-year old athlete and recent university graduate when she first began what would become a long battle against chronic illness. Armed with a degree in mechanical engineering, she was ready to take on the world. Her health, however, had other plans.

Lisa was running 10 miles a day in preparation for a marathon race when she began to experience pain in her foot. Thinking that it was just a stress fracture, she avoided seeing a doctor until the pain worsened. When she finally did see her physician, he also thought it was just a stress fracture. Six months later, however, the pain had gotten even worse, and Lisa was forced to see a Rheumatologist, who diagnosed her with Rheumatoid Arthritis (RA), an autoimmune disease causing painful inflammation in one’s joints.

Although Lisa was relieved to put a name to her pain, she encountered another uphill battle. As a result of step therapy, her medical insurance required her to use less expensive treatments to prove they didn’t work until she could take the more expensive biologic medications that her doctor recommended. Consequently, Lisa was forced to take medications for six months, during which time her symptoms worsened and she experienced irreversible joint damage. Once Lisa finally started taking the biologics, her symptoms began to improve.

For the next 10 years of her life, rheumatoid arthritis continued to ravage Lisa’s every joint. Though she was able to control the disease with treatment, pain was still a major aspect of her life.

Eventually, Lisa and her husband decided to start a family. Due to the high-risk nature of the pregnancy, Lisa went to a high-risk obstetrics practice. Though she got through the pregnancy okay, she experienced a massive flare three months post delivery, and the medications that she had used with success previously no longer worked. She lost her appetite and lost weight, and she experienced migraines, vertigo, anxiety and depression. Lisa was forced to go on an extended medical leave, and later left her job completely. After seeing various specialists, Lisa was diagnosed with systemic lupus erythematosus (SLE), another autoimmune disease that causes widespread damage to the body’s vital organs, skin and joints.

Lisa is now being actively treated for lupus, all while controlling her existing RA symptoms. She is happy to report that she finally feels like she is returning to being ‘herself’ again. One of the things that helped Lisa the most was connecting with other patients through the Arthritis Foundation, through which she later started a local support group to help others living with the disease. These days, Lisa feels healthy more often than sick, and given her tumultuous health history, that’s a win she’ll take.

To read more about Lisa’s battle with autoimmune disease, visit healthywomen.org.