Heather's story: finding calm in the chaos with neuropathic pain

Though invisible to others, neuropathic pain is a debilitating symptom of multiple sclerosis which brings many challenges. Heather shares her experience of neuropathic (nerve) pain, a symptom which became an unpredictable, silent companion, reshaping her days and challenging her body.

Neuropathic pain is not like normal pain which you can point to and explain. It feels invisible but overwhelming, like my body is screaming when nothing looks wrong on the outside. It can feel like electric shocks, sharp shooting pains, achy burning pain and it can run through my whole body and even wakes me up at night. 

The sensations can be constant, whilst others come and go more quickly. Sometimes it's sharp and sudden. Other times, it's a deep, burning ache that lingers in the background. The pins and needles are quite painful at times for me and I find that there is always some part of you hurting.

I have been able to identify that changes to temperature, stress or fatigue can set off neuropathic pain for me personally. Which became visible when I noticed a flare up after having overdone it physically or emotionally. If I push myself when my body is already tired physically, or if I push myself mentally when I am feeling overwhelmed, it can lead to a flare up of neuropathic pain. 

Unfortunately, finding my triggers has not helped me manage this type of pain as it can be so unpredictable. The pain occurs often without the presence of a trigger which makes it hard to feel in control of my MS and prevents me from being able to plan as I do not know how I will be feeling until that day. You can do everything right but still be in pain. 

I take duloxetine to help me manage my pain. I have tried physio for it before, which helps to keep my muscles strong, but it did not help to take the pain away. I have not yet been able to attend a pain management clinic, which led me to develop self-management techniques to deal with the pain by myself. 

Understanding that I cannot always control the pain, but I can choose how I respond to it, has allowed me to develop gentle practices which offer the chance to slow down and work through the pain.  

Below are three gentle practices which I follow to work through the chaos of neuropathic pain.

• A quick check in with my mood and energy.
• A grounding breath to slow my body down.
• Repeating an affirmation. I am allowed to slow down. I am already enough. 
   

Slowing down is important for me when managing this symptom. Recently, I was shopping with my daughter and I felt the pain come on. All I wanted to do was cry and for it to stop. Understanding that I can choose how to react, allowed me to slow my body down. I chose to sit down and wait for her, which allowed me to find calm amongst the chaos.

Learning to slow down can feel debilitating and upsetting, but understanding its importance in helping to manage my pain allows me to find strength within it.

If you feel like you need support with your pain, you're not alone. Our helpline is here to guide you through this and help you find the information and support you need. You can call us on 0800 032 3839 or email ask@mstrust.org.uk We're here Monday to Friday, 10am to 4pm (excluding bank holidays).

Read more about the MS Trust helpline

• If you want to hear more from someone else about their experience of neuropathic pain, head to Caroline's story.
• For more ideas on living well with MS, have a look at our wellbeing hub.