Caroline's journey with neuropathic pain

Caroline, who lives with secondary progressive MS, shares her story of living with long-term neuropathic (nerve) pain. She sheds light on the importance of open conversations with your healthcare team to gain access to effective treatment.

Pain has been a near-constant part of my life with multiple sclerosis. In the early days, during relapses, I mostly dealt with tingling and numbness – uncomfortable yes, but it usually went away. Then, around 2010, everything changed.

Completely out of the blue, I started experiencing horrific pain in my thigh. It felt like I was being stabbed repeatedly – not constant, but relentless, nonetheless. The worst part? It could be triggered by the slightest touch. My partner turning over in bed could even set it off. This made sleep impossible.

Fortunately, I had a routine appointment with my MS nurse shortly after it began. She suggested that medication could help and even provided me with a note to give to my GP listing medications to try. I was then able to see my GP that same day. 

I initially tried amitriptyline, which sadly, made no difference to my pain. However, it still offered a huge relief as it helped me sleep.  My nights were no longer endless, and I was able to sleep right through. Sadly, it did not stop the stabbing pain and so, I returned to my GP the next week and was prescribed gabapentin. 

I began taking this on a low dose which massively helped to reduce the intensity of the pain. Over the next few weeks, on the advice of my GP, I increased the dosage until the stabbing pain no longer existed. My pain finally eased. I continue to take gabapentin as if I miss a dose, I am quickly reminded of the intensity of my pain. 

I was finally free from the stabbing pain, only for the numbness in my legs, feet and hands to start getting much worse. At first, this pain would irritate me more than anything, but I began working with my GP, who had a keen interest in neurological conditions which was useful. We tried a variety of medications, but nothing really helped. This numbness eventually became my new normal.

Then, I developed a further type of pain, a burning sensation on the soles of my feet. Every single step left me in pain. Even sitting with my feet on the floor hurt. I tried numerous medications but again, none of them helped.

My neurologist suggested capsaicin cream. I was desperate at this point and felt anything was worth a try. Big mistake – within minutes of applying it, the pain was unbearable which made washing the cream off a challenge.

Over time, the burning pain has eased, whereas the tingling and numbness tend to fluctuate but overall have gotten worse. After more than ten years, it's now part of my every day. It rarely stops me from living my life.

Throughout my journey living with neuropathic pain, my MS team has been incredibly helpful in pointing me in the right direction. But the biggest difference came from my GP, who was incredibly proactive in helping me manage my pain as he continuously adjusted my medication.

The biggest takeaway I want people to have from hearing my story is to talk to your GP and your MS team. It might take a few different attempts before you find the thing that works for you. There is no way I would be in the position I am in today without their help. Don't try to cope alone.

I ordered these publications to show my loved ones and even work colleagues, exactly what I was going through. It really helped those close to me to understand what I was experiencing. 

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 Heather's story.