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Rebecca Barnard

2016-08-08 11:42

Ben's Story

I suffered from chronic/acute pain from my early teens and multiple doctors dismissed this as 'growing pains'. I even complained about a huge amount of swelling in my lymph nodes and I had one biopsied and was dismissed as 'normal'. I also had several bouts of eye pain which, yet again, was dismissed as normal.

I put up with the pain through my teens and into my twenties until one day at University, age 24, when the heating broke down and there was frost on the inside of the windows. The cleaner at my hall noticed I was walking with a pronounced limp and was stooping badly and told me to see my GP. I walked in to my GP expecting to be told everything would be OK but was surprised when they sent me for an emergency X-ray and blood tests: a few days later I was told that I had Ankylosing Spondylitis that had been very aggressive for over 10 years.

A few weeks later I had another eye episode and was rushed to hospital and was told that not only did I have joint problems but an associated eye problem call Iritis, where the immune system attacks the iris of the eye. I was very lucky as the local hospital had a professor who wrote text books on rheumatology and so managed to get appropriate treatment fast.

Since then I have now been diagnosed with seven auto-immune diseases including two different forms of arthritis, auto-immune tendonitis, ulcerative colitis, recurring bouts of iritis, otosclerosis (deafness), and auto-immune lung problems.

Since joining the Cloudy study I have also been diagnosed with osteoarthritis in my hands and feet at age 45.

Treatment options are limited as I had a severe reaction to Celebrex over a decade ago which means I cannot take any anti-inflammatory medication and I am on strong pain killers (Fentanyl) and immuno-suppressants, which are now not working as well as they should be as I am still getting problems with my immune system with it becoming overactive.

I have always felt that there is a relationship between how damp it is and my pain, and I am glad to see there is at last a formal study to see if there is a link between environment and pain.

The only problem I have is that chronic pain seems to affect my short-term memory and I have difficulty remembering to do the most simple of things, so having to remember to fill out my pain diary is quite a task but I am managing to keep it up to date within a day or so.

*Name has been changed