Julie's story

I had growing pains as a child and teenager and then an epidural during child birth affected my back. I have had chronic pain for over 22 years and I feel that I just have to live with it. It was queried whether I had fibromyalgia but the doctor didn’t want to call it that so I have been diagnosed with chronic widespread pain syndrome. Widespread pain is more challenging to manage as many doctors have their own area of knowledge but my pain was everywhere. I had symptoms like dry eyes, tinnitus, and plantar fasciitis.

Having a quicker diagnosis would have made it easier for me to get support earlier. Initially I was given amitriptyline, nortriptyline, naproxen, tramadol, pregabalin, gabapentin, gained 3 stone within 3 months and it was hard to lose the weight again. I saw a physio, went to the gym and had massages to try to help manage it. I have also seen a specialist podiatrist and the Foot Monkey for help with pain affecting my feet.

I feel that there wasn’t a lot of help available when I was diagnosed. I had an operation and I wish I’d had physiotherapy but this didn’t happen and I didn’t heal properly. Looking back, I wish I’d been able to speak to a specialist and I know this would have helped. 

I often experience brain fog which can affect my communication with my family and friends. I feel like I’m letting friends down if I cancel plans and some people just don’t understand the impacts of being sore and tired because they see me and I look normal. Chronic pain is invisible and hard to understand for some people. 

There was a point in my pain journey when I realised that if I continued the way I was, I would have to give up working and I knew I didn’t want to do that. I went to my GP with excruciating pain and asked for further investigations into my condition. I was referred to Orthopaedics but that didn’t really help me. I feel that I was passed around a lot of different doctors and I really struggled to get answers. My son had been seeing a specialist physio and he suggested that I went there so I did and that made a difference. I have also now reduced my hours at work and that has enabled me to continue working.

Having easily accessible information is important when managing pain so having something like an app available where people can go to look for the resources and support they need, would be helpful. Knowing where to turn for advice and support is important. 

Medication helps and I take amitriptyline to relax spasms and duloxetine to help sleep but I know that having alternative ways of managing my pain has improved my quality of life. I have a friend who gave me a lot of advice about nutrition and the importance of gut health and I am now on a gluten free diet which has really helped. Massages and heat therapy help and my friends and family know that I keep trying to do things to help myself.

I know that there are online support groups for specific conditions like Fibromyalgia but sometimes they are not helpful because people focus on the illness and not what they can do to help themselves. I also use a variety of meditation apps and keeping active apps which help to distract from the pain. 

Find apps like these under our Useful information section

I like being able to help people and being part of the programme lets me share my experiences of living with pain. I want to be able to enjoy a good quality of life and although there are times when I can’t do things, I keep trying and don’t give up. It’s important to keep my stress levels manageable, rest when I can and ask for help when I need to. I try to keep positive and have things to distract me but I do have flare ups and can’t move out of bed some days. Aids help me to make my condition more manageable and Social Work Occupational Therapy can help to obtain extra equipment. I have just bought the aids I need at the moment but I know where to go if my condition gets worse.