When living with CIDP (chronic inflammatory demyelinating polyneuropathy), physical exercise may offer various benefits, and healthcare professionals can help you work with your current abilities and aid in overcoming challenges. Studies have shown that exercising when you have CIDP may help reduce physical fatigue, enhance fitness and strength, and offer benefits for gait and balance. It may even help boost your mental health and provide meaningful social connections through group exercise classes.
Take a look at these exercise tips that have worked for people in the CIDP community—they may help you on your journey, too. Remember that CIDP affects everyone differently, so before starting any exercise routine, it’s important to get guidance from your healthcare team.
Getting started
Once your CIDP healthcare team gives you the okay to exercise, what’s the next step? If you don’t already have one, consider finding a PT (physical therapist) or an OT (occupational therapist). Mel took a hiatus from her passion as a dance and fitness studio owner after her CIDP diagnosis in 2023. She described the value of working with a PT or an OT familiar with conditions like CIDP. She noted, “Professionals with experience helping someone living with CIDP or a similar condition may know how to specifically work with you and understand how the disease affects you.”
“There are OTs and PTs that can help you figure out what to do from where you are,” said Lynn. “For example, if it’s unsafe to stand, you can work on muscles you would use from a seated position.”
Making modifications
After being diagnosed with CIDP in 2012, Rick, a former swimmer and coach, could no longer participate in water sports. He adapted his exercise routine with the help of a healthcare professional to include a full range of motion stretches that he acquired from his aquatic background. “I’ve learned these stretches from my time coaching swimmers. Now, I use them to help me stay limber and flexible.”
I've never hesitated to use an aid if I need it. If it's a bad day or my balance is off, that doesn't define me. That doesn't mean I'm more disabled.
Your PT or OT may also suggest using adaptive exercise equipment to assist you with your exercises. Various types are available to purchase and use at home, or you can explore offerings at a gym or a fitness studio. When Lynn was recovering from paralysis, one of her CIDP symptoms, adaptive exercise machines helped her ease back into a workout routine. “I started using antigravity treadmills with harnesses that provide partial body-weight support,” she explained. “I also used a recumbent bike at first, which is lower to the ground.”
Lynn also emphasized practicing self-compassion when using exercise modifications. “I've never hesitated to use an aid if I need it. If it's a bad day or my balance is off, that doesn't define me. That doesn't mean I'm more disabled,” Lynn shared.
Adaptive clothing and devices
Along with adaptive equipment, Lynn described how adaptive clothing and assistive devices have enhanced her ability to exercise with CIDP. “There are tools out there that can help people living with CIDP at each level of ability they are at,” she said.
Some examples that she uses include:
Developing a healthy exercise routine
Establishing a consistent routine, as your symptoms allow, can help you stay motivated and committed to exercising. You may be able to achieve this with effective time management and a CIDP Fitness Log that helps you to keep track of progress and identify what works best for you.
A gradual approach to exercise is also key to incorporating a regular routine when living with a neurological condition, helping your body adapt slowly and reducing the risk of injury. Lynn offered insight to encourage positive results. “Start from where you are and add to it bit by bit,” she said. “If you can get up and move, then start by walking every day, even if it's to the end of your driveway and back.”
Be sure to have grace with yourself, too. It can be unpredictable how you will feel each day with CIDP, so listen to your body and rest when necessary. You know your body best, so trust your instincts and adjust your routine accordingly.
Cultivating your community
Incorporating physical exercise into your life can foster social support and engagement. When living with CIDP, exercising with caregivers or loved ones may strengthen your bond. Rick, for example, strives to stay active to spend quality time with his 5 grandkids: “They’re playing soccer and ball in the yard. So, yeah, Grandpa tries to be a part of these moments with them.”
Lynn, too, has found a social circle that shares her passion for exercise. While she doesn’t train with her friends as often since her diagnosis, races are now an opportunity for her to travel and visit them. “We have great friends around the world who like to meet at races,” she mentioned. “It motivates me to participate in a way that works for me.”
Practicing positivity
Maintaining a positive outlook can be a powerful tool for navigating your exercise journey. Mel, Lynn, and Rick exemplify this mindset, each finding strength in their experiences. Rick acknowledged the frustration that comes with CIDP’s unpredictability, stating, “You try to be as positive as possible and go, ‘Okay, well that's today. Tomorrow can be different.’”
When Lynn has found it challenging to exercise, she reflects on how she’s overcome significant CIDP challenges to help inspire her. “When I'm in the situation of doing a workout that's hard, sometimes I think to myself, ‘You got through paralysis. You can get through this.’”
Mel expressed how staying positive and persistent has helped in making dance a part of her life again. “Being ill—it was like, ‘I cannot lose dance right now. I have to figure out how to get involved.’ So, it just became something I had to reach for and figure out how to get back into.”
Embracing this positive perspective may be helpful when it comes to finding the motivation to incorporate exercise into your daily life.
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