15 December 2025
Since Sarah was diagnosed five years ago, she has developed ways to cope with the negative impact that living in constant pain has had on her life. Sarah shares her experience of navigating these darker days by taking back control to help limit the negative impact that her pain can have on her emotional and mental well-being.
Nerve pain is hard to explain to people. It's a strange kind of pain, one I never experienced before MS. It hits my back, arms, thighs…places that feel fine one minute are on fire the next, and because it’s invisible, it’s easy for people to forget it’s there. For me personally, it’s there when I wake up, when I go to bed, and every hour in between during bad flare-ups.
The emotional fallout is just as exhausting as the physical pain. Living with long-term pain has pushed me into depression – something I’d never experienced before MS.
Some days the sadness is heavy. Some days it’s anger. Sometimes it’s all of it at once.
I often withdraw socially when things get bad. I stop replying to messages, not because I don’t care, but because I’m tired of saying I’m still not okay. This isolation becomes a viscous cycle.
To wake up and go to sleep in pain every day persistently when it’s at it’s worst can make you completely exhausted... and hopeless.”
Over time, I learned that if I was going to survive this emotionally, something had to change. I needed to take back some control of my MS. I started experimenting with things outside of medication that would help me to cope better and they made a real difference to my pain. I experimented with things such as, diet changes, heat pads, gentle yoga, oxygen therapy, hot baths, journaling and gratitude exercises. Finally, I felt a little bit of hope.
I think taking things into my own control has helped me manage the mental and emotional impact of long-term pain.
Implementing these things into my life then became healthy habits that I now live by. Whilst it did not make living with the pain easy, it sure made it easier to cope with. This then helped to improve my mindset which I think is so important when navigating the emotional ups and downs of MS because it allows you to be much more resilient. When I realised that my life was not going to be 'normal' anymore, it became easier.
Sadly, the psychological support I’ve received through the healthcare system has been minimal. Therapists often treated my MS like a one-time trauma, which only made things worse. MS is not something you recover from.
That’s why MS Trust has been such a lifeline. Their information, helpline and simple yet informative explanations have helped me to understand my symptoms, medications and emotions in a way the medical system often hasn’t. Their website is incredibly useful and is highly trusted, which makes navigating your pain journey that little bit easier.
The MS Trust is always somewhere I turn to when I need validation or help with my MS symptoms, particularly with pain.
In the early days of my diagnosis, I also contacted the MS helpline as I was on the wait list to see my MS nurse but was struggling with my pain.
The support I received was so reassuring… they made me feel really validated and it was nice to speak to a real person.
Living with MS pain is an ongoing emotional rollercoaster. But I’m learning to be kinder to myself – celebrating small wins, resting without guilt, and reaching out for support when I need to.
I certainly don’t have everything figured out. I still have bad days, bad weeks, bad flare ups. But I’m trying and if I keep trying, I know I’m moving forward.
Anyone living with MS is stronger than they realise. Surviving something unpredictable every day requires a strength most people will never see.
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