Living with chronic inflammatory demyelinating polyneuropathy (CIDP) means managing symptoms that can range from frustrating to debilitating. Depending on the severity of your CIDP, you may experience tingling in your hands and feet, numbness, coordination problems, and impaired mobility that requires a wheelchair or walker.
In addition to working with your neurologist to establish a treatment plan, you can implement a few strategies into your daily or weekly routine to make every day life with CIDP a bit easier. Here are some things you can do now to raise your CIDP symptom-management game.
1. Work With a Physical or Occupational Therapist
Many people with CIDP experience muscle weakness, balance problems, and diminished reflexes. Physical therapy can help you improve muscle strength and coordination, maintain mobility, and reduce neuropathic pain, and occupational therapy can help you work on fine motor skills and teach you new ways to perform daily tasks so you can maintain your independence.
“I think it’s very helpful to work with physical and occupational therapists — they can guide you in what exercises to do or not to do,” says Michal Vytopil, MD, PhD, vice chair of neurology at Beth Israel Lahey Health’s Lahey Hospital and Medical Center, in Burlington, Massachusetts. Dr. Vytopil generally recommends low-impact aerobic exercise, like walking, swimming, or stationary cycling, which are less likely to cause musculoskeletal damage.
When choosing a therapist, be sure they have experience working with people who have conditions involving nerve damage. Also, be sure to get the all-clear from your doctor before starting new physical activity — and better yet, ensure your physical therapist and your doctor are coordinating and communicating about your care plan.
2. Focus on Good Nutrition
A healthy diet is an important part of managing CIDP, and should focus on a Mediterranean-style diet that includes anti-inflammatory, nutrient-dense foods such as fresh fruits and vegetables, whole grains, nuts, and fish. For people with a peripheral neuropathy condition such as CIDP, it’s particularly important to steer clear of foods high in saturated fats and processed foods, as well limit or avoid high-sugar foods and alcohol, which have been found to put your nerve health at risk.
It’s also important to stay hydrated if you’re undergoing intravenous immunoglobulin therapy to prevent side effects ranging from headaches to kidney damage.
3. Seek Mental Health Support
Some research suggests people living with CIDP have a higher risk of developing mental health symptoms and disorders. Many people admit feeling sadness when thinking about life before symptoms began, a time with fewer limitations. Self-image may also be impacted; perhaps you now see yourself primarily as someone who has CIDP, rather than recognizing your condition as only a part of who you are and something you can learn to manage.
You may find it healing to work with a mental health professional who can help you process complicated feelings about living with CIDP and develop coping strategies to feel more content and in control in your daily life. You could also consider joining a chronic pain support group. There, you’ll meet people who understand what you’re experiencing and may share details on the latest treatments and strategies that are working for them.
4. Find Balance and Learn to Prioritize
It’s not just physical balance you’ll want to maintain — you’ll have to listen to your body and find a rhythm of activity and rest that feels good to you. By prioritizing and accepting help from friends and family, you can focus on what’s most important and protect your overall health.
5. Use Assistive Devices
Whether it’s a brace, walker, or small tool to make it easier for you to do things around the house, assistive devices can make a big difference by reducing pain, adjusting for muscle weakness, and preventing injury. They can also help you stay independent and safe. “Things like bracing will help not only manage symptoms, but reduce flares and improve quality of life when you have CIDP,” says Lewis.
Some other examples of assistive devices include:
Handrails and grab bars in the bathroom
Bathtub and shower thermometer to help you check the water temperature
Gloves to prevent cuts or scrapes when doing housework
Jar openers
Zipper pulls
Button hook
Long-handled shoe horn
Managing CIDP goes beyond medications. It also requires collaboration between you, your neurologist, and other specialists working together to minimize symptoms and help you maintain your quality of life.
The Takeaway
Living with CIDP can involve a wide range of symptoms, from mild tingling to significant weakness and mobility challenges, making daily life difficult for some people.
Alongside medical interventions, lifestyle measures — such as working with physical and occupational therapists, eating a healthy diet, and using assistive devices — can help you manage symptoms and maintain independence.
A holistic, team-based approach that combines medical care with personalized lifestyle strategies and mental health help can improve quality of life and allow you to feel more in control of your condition.
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