Suzanne's Story

I developed shingles (also known as herpes zoster) in 2004, when I was 27 years old, following a period of prolonged stress. I only had two blisters on my lower left torso, and so I initially thought they were insect bites. This led to a delay in seeking medical treatment and meant that by the time I did see my doctor it was too late for anti-virals and I received only co-codamol. A few days after seeing my GP my pain levels rocketed and I experienced deep excruciating pain up my spinal nerves, as well as around my torso. I could barely walk. I was prescribed amitriptyline. My pain was made worse by consuming hot drinks or meals too quickly, as well as by stress. After three months I was diagnosed with postherpetic neuralgia (PHN). The pain lasted for a year and a half, gradually dying down during this time. After that, I thought it had gone for good.

Unfortunately, two years later, it began to reappear on and off over nine months until, in April 2009, it flared up very badly. I developed pain round my upper right torso, joining up with the top of my original pain, along with excruciating new pain in my spinal nerves (the word 'torture' is no exaggeration). I also became hypersensitive to cold temperatures and to the wind/sea breezes. I was diagnosed with PHN again. A few months after diagnosis I moved house, and my pain began to worsen and to affect my ability to function normally. I had developed allodynia (pain that comes on from simple contact that is not normally painful) to air movement of all things! Not only was the wind painful, but also fans and even the movement of air in a public building hurt. I experienced excruciating waves of pain, which was extremely debilitating and really affected my quality of life. A new GP referred me to a pain clinic, as my pain wasn't improving and it was affecting me at work.

Due to the unusual distribution of my pain I was subsequently referred to a neurologist for investigation. After many tests, no other cause has been found for my pain. It can no longer be called PHN as it has gone beyond the original shingles distribution; I now also experience pain round my eyes and temples (triggered by cold temperatures) as well as in my mid to upper torso. My condition is now chronic neuropathic pain, originally triggered by shingles. It is maladaptive plasticity by my nervous system following an attack by the herpes zoster virus; i.e. my nervous system has done a very bad re-wiring job when recovering from shingles, which has led to permanent changes. It has been described as “ being like the spreading of pain that complex regional pain syndrome can cause, along with ophthalmic trigeminal neuralgia, on top of a severe PHN!".

For medication I now take pregabalin, with a low-dose duloxetine, and I no longer suffer so much with air movement, though I still need to wear thermal layers under my clothes all year round. However, my pain has gradually become more hypersensitive to cold temperatures and I am now severely debilitated below 5C and especially when it's freezing. Despite wrapping up like an arctic explorer (including my face; my eyes are covered by glasses), even a couple of minutes outside in these temperatures leads to physical shaking (my body goes into shock), an increased heart rate, breathlessness and a 24-48 hour pain flare-up, resulting in exhaustion. Conversely, extreme heat also causes a rise in pain and I often experience pain from sudden changes in temperature from cool to hot too, though cold is, by far, the worst.

For me then, weather is a big factor in my life, especially in the winter. At this time of year I need to know the temperature and wind speed before I go outside, if I go out at all. The colder and windier the weather, the worse my condition is, so arctic winds are torture!

However, I am determined to remain positive and wish to use my experience and skills to help others. I am a chartered health librarian working for the NHS; so I'm a skilled searcher of evidence-based health research. My career has really helped me understand my condition and I am fortunate that I am able to continue working, thanks to my supportive managers, parking office and occupational health department. I am also an active member of Pain Concern and a member of the HealthUnlocked Community. I have very much enjoyed being part of the Cloudy study.

Do you have a pain story that you would like to tell ? if so, email cloudypain@manchester.ac.uk and we will help you to pull your experiences together. Stories can be completely anonymous if preferred.