Winter Survival Guide for CRPS - Part 2

In part 2 of this article, we will explore how to maintain self-care and build support systems in the winter while living with CRPS.

Part 1 of Burning Night’s winter survival guide for CRPS offered suggestions for clothing and accessories to keep you warm without irritation and pain management techniques for colder days.

By incorporating tools and techniques into daily life you can help yourself or a loved one living with Complex Regional Pain Syndrome (CRPS) to find an emotional balance, improve pain resilience, and achieve mental clarity throughout the winter months. This makes managing the physical and mental challenges of CRPS a little easier.

Creating and maintaining a winter routine is especially important if you live with CRPS. It can help to manage the mental and emotional toll of CRPS. To maintain emotional balance, reduce stress, and better manage the unique challenges of colder days, it is key that you promote light exposure, and incorporate self-care, and relaxation techniques.

Journalling to Process Emotions and Track Pain

Journalling is a powerful tool for managing CRPS. It can help you to process emotions while identifying patterns and triggers that affect your pain.

A study by Charoenpol et al. (2019) found that patients with chronic (non-cancer) pain benefited from the use of a pain diary/journal. Patients found that their pain intensity reduced and that both their mood and limb function improved.

To get started, all you need is 15 minutes of quiet time and a pen and paper, or a journaling app, to document your feelings and thoughts. Try to write without concealing your true feelings. The whole point of journaling is to connect and process emotions by getting in touch with how you are truly feeling. If you are constantly criticising yourself this will make the process much harder.

Allow yourself to feel the negative feelings and examine why you feel this way but don’t forget to hold onto the positive moments too, as they can often be fleeting. Try to develop a journaling habit, it is a commitment you are making to yourself and your wellbeing.

If you’re not sure how to start your pain diary, make use of the Burning Nights CRPS Support ‘Pain Diary for CRPS’ template.

Creating a pain diary can be a very useful tool, not only for you but also for your doctor and other healthcare professionals, in identifying triggers and recurring patterns in your pain.

Mind-Body Techniques for Pain Management

Managing the physical and emotional challenges of CRPS is no walk in the park, but by utilising mind-body techniques you may feel like you’re in a picturesque park in no time.

Techniques such as guided meditation, mindfulness, and breathing exercises work by calming the sympathetic nervous system, which is often overactive in individuals with CRPS, leading to heightened pain sensitivity and stress. At the same time, they help activate the parasympathetic nervous system, the body's "rest and digest" mode, which promotes relaxation, reduces inflammation and supports overall healing.

• Guided Meditation - Listen to calming instructions or visualisations that help shift focus away from specific areas of pain and stress. For more information, take a look at ‘Visualisation Relaxation Techniques for your CRPS or Chronic Pain’ in our ‘Relaxation’ article
• Mindfulness Practice - This method brings attention to the present moment, encouraging acceptance and reducing anxiety. Practicing mindfulness may reduce the perception of pain and negative thoughts. There are many methods used to meditate, such as transcendental meditation (repeating a word, phrase, or sound to quiet your thoughts). Check out our article ‘How To Practice Mindfulness For Your CRPS or Chronic Pain’.
• Breathing Exercises - When in pain, we typically take short, sharp breaths without noticing our breathing pattern. Techniques such as deep breathing, rhythmic breathing, or deep controlled breathing are simple yet effective ways to take slow, controlled breaths. This signals the parasympathetic system to relax, easing muscle tension and promoting a sense of calm. To learn how to use the aforementioned techniques take a look at our article ‘Breathing Exercises for CRPS’.

Incorporating these practices into your daily routine, even for just 10-15 minutes a day, can help rebalance your autonomic nervous system, reducing pain and supporting emotional resilience.

It is therefore important to develop energy conservation techniques, especially on those busy days. By following the 5 Ps of fatigue management: Plan, Prioritise, Pace, Pleasure and Permission, you can avoid overexertion.

• Prioritise - Let go of non-essential tasks and identify priorities. Tip: Create to-do lists and choose which tasks are essential and do those first.
• Plan - Spreads out activities across a number of days. If you have a particularly busy day one day, plan rest for the day after. Tip: Use a diary to plan ahead.
• Pace - Listen to your body to understand your own limits. Tip: Work in short bursts (e.g. 20-30 minutes) with at least a 5 minute break in between. Why not check out our pacing for CRPS article to help you understand pacing?
• Positioning - Avoid unnecessary effort. Tip: Place frequently used items within easy reach.
• Permission -  Give yourself permission to do things differently. Tip: Allow yourself to ask others for help.

You may find yourself feeling isolated more in the winter months. It can be harder to get out and about, especially with the change in weather and the reduced daylight hours but is important that you try to maintain relationships. Though this may be in a slightly different way, it is possible.

Engaging with family, friends and people who share similar experiences provides comfort, understanding and practical advice. Here are some ways you can stay connected:

Online Communities

• Facebook - Platforms like Facebook host pages and groups for CRPS support, such as the Burning Nights CRPS Support page and the private Families and Caregivers Facebook Group ran by Burning Nights CRPS Support. Pages and groups enable members to share tips, stories and encouragement.
• Instagram and Tiktok - Platforms such as the Burning Nights CRPS Support Instagram and Tiktok enable followers to stay up to date with the latest event information and facts about CRPS.
• Forums - Not on social media? Burning Nights CRPS Support offers an online community forum!

Educate Your Support System

• Share Information - Give out leaflets, videos or online articles. Burning Nights CRPS Support have two information leaflets that you can purchase from our online shop; the ‘Adult CRPS Information Leaflet’ and ‘CRPS in Children and Teenagers Information Leaflet’. Additionally, we have an abundance of articles on our blog that you can send to your friends and family!
• Practical Ways They Can Assist - Whether its family or friends or carers having the support is what counts. However, it is important that you be specific about what you need as loved ones may not always know best how to help. You may want to think about physical help i.e. grocery shopping and household cleaning. Additionally, emotional support such as someone that can be a listening ear to discuss your concerns.
• Therapy and Counselling – It’s not always possible to have an emotional support network made up of family/friends/carers. Burning Nights CRPS Support provides a number of therapeutic, befriending and helpline services.

Making use of the correct mobility equipment and tools, along with planning ahead, is important all year round but especially important during the winter time, as your safety may be at risk i.e. slips, trips, and falls.

Assistive Devices for Mobility

• Walker with Wheels - A four-legged walker with wheels offers more stability for those with limited mobility, especially on uneven ground. Additionally, if you are unable to endure prolonged physical effort, this type of walker often has the option for a seat.
• Canes or Crutches with Winter Ferrules - Attach high performance ferrules to prevent slipping on icy surfaces.
• Wheelchairs - Feeling unsteady on your feet due to pain, and worried about falling in the winter weather? Perhaps consider a wheelchair on days you have to go out of the house i.e. in snow. It may provide you with a sense of safety and prevent further injuries from falls. Please always consult a doctor or Occupational Therapist on your decision. Also, feel free to read through our ‘Mobility Equipment’ guide which goes into more detail about this type of decision.

Using these tools can reduce strain, increase safety, and make daily tasks more manageable.

In ‘Winter Survival Guide for CRPS – Part 2’, we've explored how to maintain self-care and build support systems all whilst living with CRPS, in the winter. Remember, small adjustments - like staying warm, pacing activities, and reaching out for support - can make a significant difference in managing CRPS symptoms.

If you haven’t already checked it out, go over to ‘Part 1 of the Winter Survival Guide for CRPS’, to hear about how winter affects Complex Regional Pain Syndrome (CRPS) symptoms and how to prepare for the winter and maximise warmth and comfort.

• Charoenpol, F. N., Tontisirin, N., Leerapan, B., Seangrung, R., & Finlayson, R. J. (2019). Pain experiences and intrapersonal change among patients with chronic non-cancer pain after using a pain diary: a mixed-methods study. Journal of pain research, 12, 477–487. https://doi.org/10.2147/JPR.S186105