Life with chronic inflammatory demyelinating polyneuropathy (CIDP) can feel like a minefield of anxiety triggers. From receiving your diagnosis, to adjusting your daily life to cope with symptoms, to waiting for your next relapse, CIDP and its treatment can lead to medical trauma and ongoing anxiety.e60dc2a1-f33c-4a05-9b50-8e3e8e5976298ab995dd-8a57-4841-9905-47e8c92eac47e60dc2a1-f33c-4a05-9b50-8e3e8e597629398c998a-c291-4ca3-adc1-4348074e20bb But you can decrease CIDP anxiety with techniques to stay grounded when you’re dreading an appointment or the return of symptoms.e60dc2a1-f33c-4a05-9b50-8e3e8e597629dcbe0a27-66bb-45cf-9940-3583e8252030e60dc2a1-f33c-4a05-9b50-8e3e8e59762906097e3c-fcf5-4767-85dd-f88da0a7e089
Causes of CIDP Anxiety The Trauma of Diagnosis and Waiting for Relapse The news that you have a life-changing chronic illness can feel traumatic, and some people have symptoms of post-traumatic stress disorder (PTSD) after diagnosis.e60dc2a1-f33c-4a05-9b50-8e3e8e59762930cb9e62-a8a8-4327-8494-1986d3ab61dc The path to a CIDP diagnosis may include nerve conduction tests, an MRI, or a spinal tap ( lumbar puncture ) — all of which can cause stress and anxiety.e60dc2a1-f33c-4a05-9b50-8e3e8e5976297a0771bd-86fc-408e-9823-1b51dec62ab7 Unpredictable Symptoms and PTSD Once you have your diagnosis, the fluctuation, progression, and unpredictability of symptoms can cause continued psychological distress, says Kunal Desai, MD , a neurologist with Yale New Haven Health in Connecticut and an assistant professor of neurology at Yale School of Medicine. You might find that certain reminders of your diagnosis and treatment can trigger upsetting thoughts and feelings; for example, one person with CIDP described feeling symptoms of PTSD when putting on her hospital bracelet before checkups or treatment.e60dc2a1-f33c-4a05-9b50-8e3e8e597629edbfdebc-466f-47de-bbb1-f9cae72c8e55 Isolation and Loss of Independence Beyond painful symptoms, losing independence can also contribute to anxiety in CIDP, says Nona Kocher, MD , a psychiatrist in private practice in Miami. “Experiencing difficulty with walking or doing daily tasks can make those with CIDP feel helpless or reliant on others, which can lead to negative feelings and emotions.” Your physical limitations may also prompt you to avoid social situations, leading to loneliness and emotional strain, says Dr. Kocher. Shared Symptoms Between Healing and Relapse If you worry about CIDP symptom relapse, any tiny tingle can launch a wave of anxiety . But it’s normal for healing nerves to be more sensitive and “fire” more frequently.e60dc2a1-f33c-4a05-9b50-8e3e8e5976296a02af4a-7b40-4082-b715-edc08709c8d3 This feeling could mean your nerves are recovering, but it could also be a sign of relapse. So it’s understandable for the sensation of “pins and needles” (paresthesia) to cause concern.e60dc2a1-f33c-4a05-9b50-8e3e8e5976291c382a49-79d0-4009-8564-99ca0dbfa1fb
Avoid Anxiety With Preparation How to Avoid ‘Scan-xiety’ and Neurology Office Dread The anxiety you feel before neurology appointments can overwhelm anyone, but the tips below can help you stay calm before and during your next visit. Prepare for Your Next Appointment “Before your appointment, take some time to think about what’s on your mind and what you hope to get out of the visit,” says Kocher, who recommends writing down your questions beforehand. If you tell your provider about your worries, they may be able to offer some solutions, like numbing before a shot or relaxing medication before an MRI .e60dc2a1-f33c-4a05-9b50-8e3e8e597629dcbe0a27-66bb-45cf-9940-3583e8252030 Bring Someone With You If you can, bring a family member or close friend to your provider visits or treatments for support and distraction, says Kocher. “Their presence can make the appointment feel less overwhelming and provide reassurance.”e60dc2a1-f33c-4a05-9b50-8e3e8e597629dcbe0a27-66bb-45cf-9940-3583e8252030 Bookend Your Appointment With Rest When you schedule your next appointment or treatment, add some extra time before and after to read a book, watch a movie, or take a nap. “Planning some downtime or relaxation activity prior to or after appointments and treatment sessions can alleviate stress,” says Dr. Desai. Use Grounding Techniques During a test or infusion session, or in your provider’s waiting room, you can use grounding methods to ease you through anxiety. Grounding techniques can include these options:e60dc2a1-f33c-4a05-9b50-8e3e8e597629f5585d05-1e43-46ae-a1e1-23dc8bd2569f Slowly trace the outline of your hand with the opposite finger, inhaling as you trace up each finger, and exhaling as you trace down. Take a deep breath and pull up your shoulders, then exhale quickly and drop your shoulders. Flex the toes of your right foot, then left foot, and repeat. Name five things you can see, four you can feel, three you can hear, two you can smell, and one you can taste. Focus on a happy memory by picturing it and asking yourself how it looked, tasted, smelled, or sounded.e60dc2a1-f33c-4a05-9b50-8e3e8e597629dcbe0a27-66bb-45cf-9940-3583e8252030 Try to focus on the immediate purpose of the visit to limit “what if” thinking and catastrophizing, says Simon Faynboym, MD , a psychiatrist and the medical director at Neuro Wellness Spa in Los Angeles.
Coping Techniques How to Ease Anxiety in CIDP You can manage CIDP anxiety with techniques like cognitive behavioral therapy (CBT) , mindfulness, journaling, and self-compassion.e60dc2a1-f33c-4a05-9b50-8e3e8e59762934bc445c-f56b-40c4-b8f9-13dc9c0f9e2c Cognitive Behavioral Therapy “CBT helps people with CIDP identify (unrealistic) anxious thoughts about their illness and replace them with more realistic, balanced thinking,” says Kocher. This therapy also provides tools for managing stress, like planning for flare-ups or problem-solving daily limitations, says Kocher. If you’d like to explore CBT, your provider can recommend a mental health professional for you. Belly Breathing Anxiety can keep your fight-or-flight response on high alert, but deep breathing exercises can activate another part of your nervous system that calms you down. For example, slow belly (diaphragmatic) breathing activates your vagus nerve, which helps you relax.e60dc2a1-f33c-4a05-9b50-8e3e8e59762929ec629a-7b83-491b-9085-97d12b040b0b To try one type of belly breathing called 4-7-8 breathing, follow these steps:e60dc2a1-f33c-4a05-9b50-8e3e8e5976295b3d4be7-1faa-4ecb-be5b-ed27516c4d76 Breathe in through your nose for four seconds. Hold your breath for seven seconds. Breathe out through pursed lips for eight seconds. Repeat. Mindfulness Kocher also recommends using mindfulness to focus on the present moment and observe your body and emotions without judgment. When you practice mindfulness regularly, you can retrain your brain to respond less to anxiety triggers.e60dc2a1-f33c-4a05-9b50-8e3e8e5976298d6f9f5d-8fca-4f03-8dc7-931b8f666f7fe60dc2a1-f33c-4a05-9b50-8e3e8e5976294b4ea032-c094-458c-a05b-0e1aac777824 “Mindfulness builds tolerance for uncertainty by training attention to the present moment and decreases the urge to constantly scan the body for symptoms,” says Dr. Faynboym. Self-Compassion Spilling a drink or breaking a plate because of muscle weakness can flood you with critical thoughts, but if you notice these feelings arise, allow space for self-compassion .e60dc2a1-f33c-4a05-9b50-8e3e8e59762906097e3c-fcf5-4767-85dd-f88da0a7e089 You can choose empathy for yourself by speaking or writing kind words about your body. For example, instead of saying “I can’t believe I dropped that,” say “It makes sense that my body couldn’t hold on to that plate.” Offer yourself kindness by relaxing your muscles, rubbing sore shoulders, or gently placing your hands on your temples.e60dc2a1-f33c-4a05-9b50-8e3e8e597629e5445123-6898-4ae5-8646-811b6d7310a5 It can also be helpful to recognize your shared humanity with countless people who have had similar struggles, and may be struggling even now. Keep a Journal Desai recommends keeping a daily journal of your symptoms. “Patients can become hyper-focused on daily limitations and not notice that they have gradually improved over months,” he says. Find Support CIDP support groups give you a place to share information, offer and receive compassionate encouragement, and feel less alone in your diagnosis.e60dc2a1-f33c-4a05-9b50-8e3e8e597629363b21de-7726-42b6-a31a-4ed9e302429a It’s also important to see a mental health professional who understands chronic neurological conditions. These providers can help you navigate anxiety surrounding CIDP and tailor treatments for you.
Caregiver Tips Supporting the Caregiver: Managing Shared Anxiety Caregivers can also feel anxiety about their loved one’s illness, and they need support, too. To relieve anxiety as a caregiver, you can:e60dc2a1-f33c-4a05-9b50-8e3e8e5976298c949968-2ae3-4f1a-90a3-66c57adef7a4 Ask for help from other loved ones. Make time for self-care. Learn more about CIDP. Join a caregiver support group. Listen to your loved one’s concerns. Find ways to communicate if speaking isn’t an option (like vocabulary cards or a white board). You can also help your loved one develop a flare plan: a clear set of steps to follow when symptoms suddenly worsen. That allows you to take action immediately rather than panicking about what to do, says Kocher. “It might include when to rest, which medications to take, or when to call a doctor.” Knowing you have a systematic approach to treating CIDP flares can help alleviate anxiety, says Desai. The Takeaway Medical trauma from diagnosis and treatment, the unpredictability of CIDP symptoms, and the fear of relapse can all cause anxiety. You can ease anxiety in CIDP with strategies like cognitive-behavioral therapy, belly breathing, mindfulness, self-compassion, and journaling. Support groups can also help those with CIDP and their caregivers cope with neurological symptoms and lessen anxiety.
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 PolyneuropathyGBS/CIDP Foundation International: Find a Local ChapterJohns Hopkins University: Chronic Inflammatory Demyelinating Polyradiculoneuropathy
Read the full article here
Leave a comment
