Patient 7: Anne-Marie's Story

Imagine a pebble dropping into a pool, and see the ripples expand and grow ever wider; a lovely scene for many, but for me, an image of how the events of my past year unfolded, but not in such a lovely way.

A sudden attack of painful symptoms appeared last New Year’s Day. I woke with a dry burning mouth, a nasty chemical taste and smell, sharp pains in my nose and inflamed, streaming eyes.

Within the month I began experiencing constant neuralgia in my teeth, with blistered lips and mouth numbness. Tap water and some foods tasted too bitter to swallow and I began to have all kinds of allergic reactions to everyday things. From then on, each month brought new and distressing symptoms leading to more complications and increased medical input.

My dentist was concerned as such little saliva was leading to dental problems. She discovered a cracked tooth which had to be extracted and contacted Bristol Hospital about the original continuing symptoms. My optician gave help for the sore eyes. 

It was becoming unbearable.

Spring brought gastric problems. The lack of saliva meant food wasn’t moist enough to swallow and digest properly, so I was eating less, had tongue thrush and began to lose weight.

March and April led to many tests: CT scan, Ultrasound, Endoscopy, biopsies, some tablets and a wide range of blood tests. There were many opinions but not a clear solution.

I was referred to the Dietician Service and through their good advice eased my digestive upset and helped me regain some weight, although the original symptoms continued.

By late May new symptoms of earache and neck pain and now facial itching were added to the continual torment of the original ones; daily tears and despondency became the pattern of each day.

Then, out of the blue, June and July brought the first smiles back to my face; I was beginning to get some taste back and days without stinging eyes, my weight was returning, and I began to pick up some of my hobbies again.

Autumn came and so did many appointments at Bristol Dental Hospital, which brought an outcome; Oral Disthsaesia or Burning Mouth Syndrome where faulty and misfiring nerves from the brain gave random and puzzling pains and sensations anywhere around the neck and head.

It is incurable and can lead to great discomfort and stress I was told. I am using soothing gels and sprays and what I can to find relief other than finally committing to tablets that I have poor tolerance to. 

Christmas with family and friends lifted my spirits and happily the new year brought more cheer with another pebble in the pond moment – I was referred to the Somerset Community Pain Service.

I told them my tale and in the gentle discussions that followed all kinds of helpful ideas and information on non-invasive ways to deal with the pain were put to me. I learned about mindfulness, how pain works and to count the good days as well as the bad. I practiced the exercise podcasts and learnt how to switch off from the daily stresses and really, really relax.

Using the podcasts and relaxing to music, plus tai chi exercises and mindful walks – all the better if it’s with others – has been wonderful and an unexpected turning point for me.

My family are delighted to see a happier, less frantic, me who has begun to enjoy relaxing in the garden I only ever seemed to work in. The tearful days are now rare.

Yes, I will still have some on-going painful and upsetting symptoms. And yes, I may in the future have to think of more serious medication but, for now, I have found an acceptance of it and worked out a routine that is more balanced and helps me, albeit briefly each day, to push aside the worries and ease thoughts of pain away.

Now I am beginning to see that pond of ripples differently, not as pains and problems forever circling round me, but as pains and problems ever so slowly, beginning to recede away from me.