Chronic inflammatory demyelinating polyneuropathy (CIDP) can cause extreme fatigue in up to 80 percent of people with this autoimmune condition.e60dc2a1-f33c-4a05-9b50-8e3e8e597629ba5552b4-5447-492e-ad5a-128a106a5cc2 An invisible but often debilitating exhaustion, fatigue in CIDP can affect the body and mind, which not only leaves you physically tired but can also make you feel less alert, awake, and motivated. But managing fatigue in CIDP is possible. Below, learn how to budget your energy for a full life.
Why CIDP Causes Fatigue Why CIDP Causes Fatigue Experts don’t fully understand what causes fatigue in CIDP, but they have some theories. For example, CIDP damages the protective myelin coating around your nerves (demyelination). Once nerves get damaged, your body has to use extra energy to send signals through them, which may add to fatigue.e60dc2a1-f33c-4a05-9b50-8e3e8e597629fe825201-e623-4d83-9e68-509b9f177c56e60dc2a1-f33c-4a05-9b50-8e3e8e5976290e18bc54-2bc6-4e7b-bbd8-d6e0596ab961 Nerve damage also leads to muscle weakness, so activities that were once easy can take a lot more effort, says Jeffrey Mullen, MD , a neurologist and assistant clinical professor who directs the neuromuscular diagnostics lab at the University of California in Irvine. “This increased effort over time leads to fatigue,” he says. When you have CIDP, you may experience different types of fatigue:e60dc2a1-f33c-4a05-9b50-8e3e8e597629a2eacfb9-61f1-4c04-abce-7a6d98f27920 Motor Muscle weakness Sensory or Central Systemic exhaustion and lack of energy Neurological Trouble with motivation and staying awake and alerte60dc2a1-f33c-4a05-9b50-8e3e8e59762930fde9c7-2326-4c7d-9824-a4c5d712c85a While treatment can improve your muscle strength, exhaustion can still linger. “Even if there is healing of the nerves with treatment, they often do not heal completely, so the nerves may not return to how they were prior to getting CIDP,” says Dr. Mullen. Besides demyelination, CIDP fatigue can also arise from other causes, like taking sedating medications, says Nestor Galvez-Jimenez, MD , a neurologist with Baptist Health in Miami. Other contributing factors include depression , poor sleep quality, and difficulty taking care of yourself, Dr. Galvez-Jimenez says.
Applying the ‘Spoon Theory’ to CIDP The ‘Spoon Theory’ In 2003, Christine Miserandino developed the “spoon theory” while trying to explain her chronic fatigue to a friend.e60dc2a1-f33c-4a05-9b50-8e3e8e597629e56478c2-9b28-416e-8313-7a2a39e8e90f This energy budgeting system creates a currency value or percentage for the energy it takes to complete various daily tasks, says Kunal Desai, MD , a neurologist with Yale New Haven Health and assistant professor of neurology at Yale School of Medicine. For example, you can assign “spoons” to activities you do frequently:e60dc2a1-f33c-4a05-9b50-8e3e8e5976299a436dcf-df83-4a29-a56e-3af4ef275385 Taking a shower = 1 spoon Making breakfast = 1 spoon Commuting to work = 5 spoons Having lunch with a friend = 3 spoons Taking a child to soccer practice = 4 spoons Then you can create a spoon budget that reflects the amount of energy you have available. This system can also help you identify “spoon thieves” — activities that take a lot of energy — like loud environments, long conversations, and multiple errands.e60dc2a1-f33c-4a05-9b50-8e3e8e59762908813199-0fb5-4b05-b026-9ecf5acac02b Once you know your spoon budget, you can decide how you want to spend them each day. For example, if you’re going out to eat that evening, you can skip other tasks or activities in the day to save your spoons for later. As your CIDP treatment progresses, you may find you can add more spoons to your day.
Pacing Strategies to Prevent Exhaustion Pacing Strategies On good days with fewer symptoms, you may feel tempted to catch up or make up for lost time, but pushing yourself too hard can worsen nerve damage. This “push-and-crash” cycle can lead to more frequent relapses. So, it’s better to keep your activity slow and steady, says Mullen. To help keep track of how fast you use your daily spoons, you can use the four P’s of energy conservation:e60dc2a1-f33c-4a05-9b50-8e3e8e59762906403914-2698-4d62-a17e-63d5376d1d08 Pacing Managing how fast and hard you work to complete a task or activity Prioritizing Choosing which activities to do each day and which can wait Planning Building in rest time during the day and alternating between difficult and easy tasks Positioning Modifying activities to make them easier, like sitting on a stool while cooking When you have trouble taking care of daily tasks because of your CIDP symptoms, the four P’s can help you pace yourself and get the most out of your day, says Dr. Desai.
Mental Energy and the ‘Cognitive Budget’ Managing Mental Fatigue The mental fatigue that comes with CIDP can feel just as exhausting as physical tiredness. But you can conserve your mental energy and lessen brain fog with these tips:e60dc2a1-f33c-4a05-9b50-8e3e8e5976290998d1f1-705c-4114-a4c4-62af15bad901e60dc2a1-f33c-4a05-9b50-8e3e8e5976299f7a69ca-198b-4222-8d56-a80b878767f4 Adopt healthy sleep habits , like following a consistent sleep schedule. Eat healthy, including plenty of fruits, vegetables, lean protein, and healthy fats. Set alarms and reminders to help you keep track of important information. Create a predictable daily routine to take pressure off your memory. Take 30-minute mental breaks throughout the day. Using these spoon-saving techniques, you can use that energy for other activities and fit more into each day.
Nutritional Tweaks to Support Nerve Health Nutrition for Nerve Health Although no research has proven that specific nutritional changes can improve CIDP symptoms, some nutrients support peripheral nerve health and regeneration, says Galvez-Jimenez. “B vitamins, particularly thiamine (B1), B6, and B12, play essential roles in nerve function,” he says. You can find B vitamins in meat, dairy, leafy green vegetables, and beans.e60dc2a1-f33c-4a05-9b50-8e3e8e597629ed10c90e-4609-4383-b035-d5f1f919b4d5 According to Galvez-Jimenez, other potentially beneficial nutrients include: Omega-3 fatty acids for their anti-inflammatory properties (found in fatty fish, flaxseed, and soybeans)e60dc2a1-f33c-4a05-9b50-8e3e8e597629c52602ca-f96c-4abb-a9e6-ab0b35571dfe Vitamin D for neuromuscular function (found in fortified foods like milk and cereal as well as fatty fish and cheese)e60dc2a1-f33c-4a05-9b50-8e3e8e59762924f7bf02-9c95-4cb8-aceb-82e8fa2f6c50 Antioxidants (vitamins C and E) to reduce oxidative stress that causes cell damage (found in many fruits and vegetables)e60dc2a1-f33c-4a05-9b50-8e3e8e597629ac8c1b38-f657-4d3e-9d72-c553fa74dae1 Alpha-lipoic acid for neuroprotection (found in spinach, broccoli, tomatoes, peas, Brussels sprouts, and rice)e60dc2a1-f33c-4a05-9b50-8e3e8e597629ca3962fa-6d67-422f-9753-8ef2ecc4befd Because inflammation plays such a big role in CIDP, limiting inflammatory foods, like sugars and processed foods, may also be a good idea, says Mullen. An anti-inflammatory diet may include whole grains, lean protein, and colorful fruits and vegetables.e60dc2a1-f33c-4a05-9b50-8e3e8e5976290b3aee8c-7c81-4c39-9c5a-51fec4597e79 In addition to eating nutritious food every day, it’s important to stay hydrated, which can lower fatigue after IVIG infusion, a common CIDP treatment.e60dc2a1-f33c-4a05-9b50-8e3e8e59762955248823-10fc-4895-9d52-e4a72c9d6cf7
Talking to Your Doctor About the ‘Invisible’ Symptom Talking to Your Doctor You may not know how to tell your healthcare provider about fatigue, which can push you to downplay your symptoms during a neurology appointment. Fatigue can also be difficult to describe, so your provider may recommend a tool like the Fatigue Severity Scale, which asks questions about your symptoms and how they affect your life.e60dc2a1-f33c-4a05-9b50-8e3e8e5976299141b43d-6b95-4897-bbd8-516e9a0df913 Your answers, plus a close assessment of your current medications and symptoms, can then give your provider clues to direct treatment.
The Takeaway Up to 80 percent of people with CIDP report extreme fatigue, which can affect daily life. The spoon theory can help you budget your physical and mental energy to prioritize tasks and activities for the day. Be sure to tell your doctor about your fatigue symptoms. They may recommend diet changes, lifestyle hacks, and pacing strategies to help you maximize your energy with CIDP.
Resources We Trust Mayo Clinic: CIDP Exercise Program: Can It Help Reduce Your Symptoms?Cleveland Clinic: CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)National Organization for Rare Disorders: Chronic Inflammatory Demyelinating PolyneuropathyHackensack Meridian Health: What Is Neuro Fatigue?GBS/CIDP Foundation International: What Is Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)?
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