Neuropathy develops when nerves outside the brain and spinal cord are damaged. It may affect a single nerve, a group of related nerves, or many nerves throughout the body. Symptoms can show up as muscle weakness, twitching, pain, tingling, numbness, balance problems, or a mix of these, making every case a bit different.

Ankylosing spondylitis (AS), also known as radiographic axial spondyloarthritis, has been linked to neuropathy. Research suggests that neuropathic pain is common in people with AS. One study reported that about one-third of individuals with AS experienced neuropathic pain, while another study found that this type of pain affected the majority of those with the condition. These findings highlight the strong connection between AS and neuropathic pain, though more research is needed to fully understand the relationship.

Although the exact number of people with neuropathy may be unknown, it’s associated with a lower quality of life and worse disease activity for people with AS. Neuropathy may affect your daily activities and overall health. If you or a loved one experience symptoms of neuropathy associated with AS, here’s what you should know.

What Do Neurological Symptoms With Ankylosing Spondylitis Feel Like?

On MySpondylitisTeam, people living with AS talk about different symptoms related to neuropathy.

Some members experience numbness, tingling, and weakness that range in severity, and others experience severe pain and burning sensation that may lead to difficulty in mobility. They describe feelings of tingling, like “pins and needles,” to complete numbness and immobility. Symptoms may affect a portion of the body or an entire limb or side of the body.

“There are times where I can’t feel my legs … no feeling from the waist down,” said one member. Others experience pain and tingling in addition to numbness.

One MySpondylitisTeam member talked about the progression of feelings of tingling and numbness. “My left side is mostly all numb (but I can still feel pain), and now my right side is going numb,” they said. “It starts with pins and needles, then goes numb and becomes almost totally nonfunctional.”

Another member described the sensations as “electric shocks,” adding, “My hands and feet are throbbing and numb.” Yet another shared, “I get numbness, tingling, and pain all down my right side, even on the side of my face. When I relax or in bed, my right side twitches (jerks).”

These symptoms can affect daily life and your ability to perform everyday actions. “I too have numbness all the time on my right side. It is so hard to sleep on my left side because of my neck,” someone shared. They added, “I’ve been noticing I get weakness in my legs when I drive, which really sucks.”

When neuropathy causes pain or affects daily living when even walking to the bathroom can be a challenge, it’s easy to see how it could lead to a lower quality of life.

How Does Spondylitis Cause Neuropathy?

If you’re wondering how AS can cause nerve damage, the answer is more complex than you might have thought.

AS is a complicated condition, and there’s no single known reason why it causes neuropathy. Doctors know that over time, spondylitis can cause bones in the spine to fuse. This means that they don’t move around the way they should. AS can affect your posture, causing the head to tilt forward like you’re always looking down. This posture can also make breathing more difficult by limiting how much the rib cage can move.

In AS, your vertebrae fuse because your body is trying to heal. It knows there is inflammation in the spine, so additional bone grows as a response. Over time, this additional bone connects the vertebrae and creates something called “bamboo spine,” until you can’t move the way you used to, due to lack of flexibility.

This extra bone growth and stiffness in your spine may lead to nerve damage, which can cause neuropathy. There are many nerves in your spine, and both swelling from inflammation and having less space for them to move could cause neuropathic issues. You may experience neuropathy wherever there’s inflammation or bone overgrowth in your spine. When the spine loses flexibility, even a minor accident can cause a vertebral fracture, which might compress a nerve root and lead to neuropathy.

Scientists believe there may be other ways AS causes neuropathy, but more research is needed to confirm and fully understand them.

Ankylosing Spondylitis and Cauda Equina

Rarely, people with AS may develop a complication called cauda equina syndrome. In this condition, weakness, tingling, or numbness in the legs and feet results from swelling and pressure on the bundle of nerve roots at the end of the spinal cord. This is called the cauda equina.

You may experience sciatica (shooting pains starting at the buttock and going all or most of the way down one or both legs). You might also struggle with knowing when you need to go to the bathroom. Cauda equina syndrome is a serious condition and should be treated immediately.

Neuropathy After Surgery

If your spondylitis becomes severe and doesn’t improve with treatment, your rheumatology team may suggest surgery. Surgery won’t fully resolve spondylitis, but it might be able to help with complications of the condition.

However, surgical treatment may also cause neuropathy or make it worse. Surgery can cause accidental nerve damage. If you have swelling, that could also damage your nerves. If your surgeon has to stretch or move tissues too much, that can hurt the nerves, too. All of these factors could lead to long-term neuropathy.

Neuropathy From Other Causes

There’s always a chance that your neuropathy is not caused by AS. Other conditions like spinal stenosis can cause neuropathy.

Many factors, from infections to vitamin deficiencies to exposure to certain toxins, can cause neuropathy. Work together with your doctor to determine why you’re experiencing these symptoms so you can get the treatment you need.

Treating Neuropathy Associated With Ankylosing Spondylitis

Controlling back pain and neuropathy-related pain in people living with AS has proved difficult. Some researchers suggest that neuropathy may be a large driver of chronic (ongoing) pain in people with AS. Some people with spondylitis continue to report chronic pain even when imaging tests show that their inflammation is under control.

Medication

Some medications for neuropathy-related pain include those that target inflammation like nonsteroidal anti-inflammatory drugs (NSAIDs) or anti-seizure drugs, which can help with neuropathy pain. Other medications that target the immune system to help AS, like tumor necrosis factor inhibitors and Janus kinase inhibitors might help neuropathic pain and other symptoms.

Physical Therapy

Physical therapy can help keep your spine and lower back as limber as possible, while also helping with pain management. Your rheumatologist can help you find the treatment or combination of treatments that are best for you.

It’s important to talk to your health care provider about any symptoms you’re experiencing. This includes symptoms you might not think are associated with spondylitis. Knowing the full extent of your symptoms will help you and your doctor better understand your condition and help them find the best treatment options for your needs.

Talk With Others Who Understand

On MySpondylitisTeam, the social network for people with spondylitis and their loved ones, more than 98,000 members come together to ask questions, give advice, and share their stories with others who understand life with spondylitis.

Do you have spondylitis and symptoms of neuropathy? What do they feel like and how do you manage them? Share your experience in the comments below, or start a conversation by posting on your Activities page.