Peripheral Neuropathy In Cystic Fibrosis

Better care and treatment for people living with cystic fibrosis (CF) means that people with CF have improved survival rates and live longer. This also means we are seeing the longer-term effects of CF and its treatment on the body, which may result in other conditions. Peripheral neuropathy is one of these conditions.

What is peripheral neuropathy?

Peripheral neuropathy is a condition caused by damage to the nerves outside of the brain and spinal cord, known as peripheral nerves. The peripheral nervous system sends signals from your brain and spinal cord to the rest of your body. It also sends sensory information to the brain and spinal cord.¹

Peripheral neuropathy can be caused by:¹

• Autoimmune diseases
• Certain kinds of medicines
• Infections
• Inherited factors
• Exposure to toxins
• Metabolic issues
• Traumatic injuries
• Vitamin deficiencies

Health conditions can also cause peripheral neuropathy. One common cause is diabetes.¹

What are the symptoms of peripheral neuropathy?

Symptoms of peripheral neuropathy depend on which nerves are affected. Common symptoms can include:¹

• Prickly or tingling sensation in the hands or feet that go into the arms or legs
• Sharp or stabbing pain
• Loss of coordination
• Muscle weakness
• Sensitivity to touch
• If motor nerves are affected, paralysis can occur
• Heat intolerance
• Bowel/bladder/digestive problems
• Changes in blood pressure

Peripheral neuropathy and cystic fibrosis

More than 85 percent of people living with CF show signs of malabsorption from exocrine pancreatic insufficiency. This means that the body has a hard time breaking down and using the nutrients in food. It causes problems with fat absorption that can prevent the body from getting the vitamins it needs, including fat-soluble vitamins like vitamin E. A deficiency of vitamin E can cause peripheral neuropathy.²

Vitamin E deficiency is so common in people living with CF that many take vitamin supplements. For adults with malabsorption, it takes decades to develop neurological signs. When vitamin supplements are given in the right doses, the neurological symptoms caused by the deficiencies get better.²

People living with CF can also experience vitamin deficiencies in water-soluble nutrients like folic acid or B12. Since B12 absorption is tied to pancreas function, people with CF may want to talk with their doctor about taking B12 supplements if needed.²

One study found that there was a large connection between peripheral neuropathy and increasing age. This suggests that the injury to the nerves is probably related to people living with the effects of CF for more years.²

Other studies have shown that peripheral neuropathy in people with cystic fibrosis is tied to issues with blood vessels and the immune system. However, more research is needed to understand these ties.²

What if I think I might have it?

If you think you might have peripheral neuropathy with your cystic fibrosis, talk with your doctor and treatment team. Ask for bloodwork to see if you may have nutritional deficiencies. Your care team may suggest vitamin supplements, depending on your results.

Nerve function tests or imaging tests might also be done, depending on the suspected underlying cause.¹

Other things you can do to support nerve health include:¹

• Eating a healthy diet with fruits, vegetables, whole-grains, fish, and low-fat meats
• With your doctor’s permission, exercise regularly
• Quit smoking cigarettes and reduce alcohol consumption

Treatment of peripheral neuropathy in cystic fibrosis

If you are lacking certain vitamins, you might find relief after taking vitamin supplements. Other treatments can include:¹

• Pain relievers
• Anti-seizure medications
• Transcutaneous electrical nerve stimulation (TENS), a treatment that sends electrical impulses to the nerves through electrodes placed on the skin
• Creams, gels, ointments, lotions, or patches that are applied to the skin

For severe cases, physical therapy or surgery may be necessary.¹

Things to consider

If you have cystic fibrosis and suspect you have peripheral neuropathy, talk with your treatment team. Make sure other causes and conditions are ruled out, and work with them to find the best treatments for you right now.

Have you or a loved one with CF experienced peripheral neuropathy? Share your experience with us.