The main advice I would give to someone in the same position as me would be don’t let it stop you doing anything!
I am 21 years old from London. I am a medical engineer and I love windsurfing. I also enjoy playing the piano and volunteering in my local hospital.
My back pain first started when I was 14. I had been on a dog walk with my family, and after we had driven home, I suddenly realised I couldn’t move my legs. My back muscles had gone into spasm. My parents drove me to hospital, and they gave me some medication to help my pain. I was sent home. I was told that I was making my symptoms up because I shouldn’t be experience low back pain at such a young age. Fast forward a year, the exact same thing happened. Again, I had no answers. 2 more years down the line, I was in my first 2 weeks of university. I was sat in a lecture and the same thing happened again. This time, I was in hospital for just over 3 weeks (not quite the start to university I was hoping for!). After what seemed like thousands of scans I was diagnosed with spinal stenosis. This meant that the hole in some of my vertebra have become narrowed, so pressure is put on my nerves. There are different causes of Spinal Stenosis but mine is due to discs degeneration. Having a diagnosis was like the best thing in the world and the worst thing at the same time. It was terrifying and full of unknowns, but at the same time, I finally knew what the problem was, and I could start getting better.
” Having a diagnosis was like
the best thing in the world and the
worst thing at the same time. “
Spinal stenosis causes me a lot of pain. I also have no feeling below my knee on my left leg. I did a very intensive physiotherapy rehabilitation programme to help me walk safely. This helped me to regain the muscle that I had lost and gain new muscle to support my spine. I think the thing that helped me the most was hydrotherapy. This meant that I didn’t have to put my body weight through my legs, but I could still relearn how to walk. There are several treatments for spinal stenosis, both invasive and non-invasive. At the moment I am going down the non-invasive route with physio and medications, but my doctors think I will need surgery in the future, but we are trying to wait until I am abit older.
I have regular scans to check how my discs are and to ensure no further damage is being done. I will keep having to have these scans throughout my life as the condition can degenerate. I take medication to help with pain and I have regular infusions to help me with some of my other health conditions. These also help my pain from my back. The thing that best helps me manage my pain is a TENS machine. This is a little machine that sends small electrical pulses through my back. When my medical team first mentioned this to me, I thought it sounded like torture, but it is most definitely not! I am now waiting for neuromodulation treatment, which is like a more permanent version of TENS, so I am really hopeful this can help me! My pain is made worse by staying in the same position for too long. Doing sport also makes my pain worst but the pain is definitely worth it because it’s so fun.
The main advice I would give to someone in the same position as me would be don’t let it stop you doing anything! After I was diagnosed, I thought maybe I wouldn’t be able to complete my degree or do any of the exciting things I had planned for my future but so far, I have been able to do everything I have wanted to do. I also think it’s really helpful to speak to people in the same position as you. Sometimes it can feel like you are the only person in the world with your condition but speaking to others shows that lots of people think exactly the same. That is part of the reason I want to share my story to help others feel less alone.
I think it’s important to share my story because I want to help people in a similar position as me. I want to be a voice for young people with back pain and show them that being diagnosed with a chronic illness isn’t necessarily a bad thing and you can use your experience for something positive. I have recently started to share my health experiences to help others and that is why I decided to join the Patient Advisory Board. Having been told I am ‘too young to have low back pain’, I want to show people of all ages can experience back pain and therefore any treatments developed, need to be available for all ages. When the advanced therapies have been developed, it is potentially my generation who will have the greatest access to the therapies and therefore it is so important that a young person helps out in these initial stages.
After I was diagnosed with Spinal Stenosis, I did a lot of research about the condition. I got stronger, both physically and mentally. I wasn’t going to let something like this stop me and anyone who said it was going to was wrong. I live a life very similar to my friends. Yes, I might have a few more challenges, but if you ask for help, whether that be from your family, friends, or medical professionals, it is totally possible to overcome those hurdles. Whilst I manage my symptoms really well, I always think how different my life would be without back pain. I think about what I could achieve and how much more energy I would have. I have had chronic pain for 6 years now. If a treatment could stop my pain all together, I think I would feel invincible. It would be like the best present anyone could give me.
” I have had chronic pain for
6 years now. If a treatment could
stop my pain all together, I think
I would feel invincible. It would be
like the best present anyone
could give me. “