In the beginning

Nearly twelve months ago I was diagnosed with seronegative inflammatory arthropy aka seronegative arthritis. This diagnosis marked the end of years of going to my GP with lower back and hip pain. Because I was otherwise fit and healthy these aches and pains were dismissed as trapped nerves and strained muscles.

At the time I did not have a very sympathetic GP and I suspect that I was written off as a neurotic time waster. One particular consultation comes to mind. I had been suffering from pain and stiffness in my left hip for several weeks and so I made an appointment. After a cursory examination I was told 'you did not seem in any great discomfort when I was examining you therefore there is nothing wrong with you.' He then got up from his chair and opened the door for me to leave. Mortified I left without protest. Once outside the health centre I sat down on a nearby bench and tried to process what had just happened. I did not realise that tears were running down my face until I became aware of the curious looks from passers by. I pulled myself together and limped off back to work, stopping on the way to buy yet more painkillers.

After that I didn't make any more appointments about my recurring bouts of back pain. Instead I carried on taking over the counter painkillers, soothing the pain with heat and ice packs and tried to carry on as normal. Time passed and I relocated to Bournemouth.

One day, 18 months ago I got out of bed one morning to discover that I could barely put any weight on my left foot without excruciating pain in my Achilles tendon and the sole of my foot. Luckily I was on leave from work and I hobbled around for a few days and it improved, but did not go away completely. A few weeks later the pain in my Achilles tendon flared up again. In desperation I made an appointment with my new GP. Sitting in the waiting room I braced myself for the usual dismissal. However it never came. My GP patiently and sympathetically listened to my list of ailments, including the lower back pain which had reared its ugly head again. She then examined me and asked me a range of questions about my general health and family history. She was particularly interested in the fact that my father had suffered from ankylosing spondilitis, a form of arthritis that affects the spine. Finally she decided to refer me to a Rheumatologist.

Once at the hospital I had a battery of tests including an MRI scan of my hips and lower back. It turned out that I have inherited the HLA-B27 gene which is associated with ankylosing spondilitis but because I don't have the rheumatoid factor in my blood the diagnosis is seronegative arthritis.

When I got the diagnosis I felt a range of emotions, relief that I finally knew what was wrong with me and that at last someone had listened to me, but also worry about what the future would hold. My erythrocyte sedimentation rate (ESR), an indicator of inflammation in the body, was high at the time. It was high enough to cause concern. Apparently the normal rate for a woman of my age would be under 20, mine was 85! An ultrasound of my left ankle showed that there was significant inflammation at the point where my Achilles tendon attaches itself to the bone. Apparently this is a classic symptom of seronegative arthritis. I had a course of anti-inflammatories and physiotherapy and my ESR started to fall.

After struggling with my diagnosis for a couple of months I decided that I needed some help coming to terms with it. So, I started seeing a counsellor. My family and friends were just too close to the problem. It really helped to talk to someone who was not involved in the situation. At my first counselling session it became apparent that I had not come to terms with my diagnosis at all. In fact I was so scared of what the future would hold that I was afraid to make plans or commit myself to anything in case I was not well enough when the time came.

All forms of arthritis are cyclical in nature. Flare ups are usually followed by a period of remission. The problem is that no-one can predict when the flare ups will occur. Remissions can last for weeks, months and even years. I have had three flare ups in the last 12 months. When I am in the middle of a flare up simple things like getting out of bed and walking short distances are agonising.

I am one of the lucky ones. The lack of rheumatoid factor means that my arthritis is considered mild and less likely to cause long term joint damage. I was told by my Rheumatologist that it was highly unlikely that I would need joint replacement surgery but it was probable that I would have some mobility 'issues' as I got older.

My counsellor has told me that I should treat this whole episode in the same way as I would deal with a bereavement. When he said that a few thing fell into place. I sadly lost my Father at a relatively young age and suddenly I recognised some of the emotions that I was going through. Disbelief, anger and acceptance.

I was angry for a long time. Angry that my former GP had not picked up on my symptoms. Early on I had told him of my Father's illness, it is well known that there is often a hereditary factor in arthritis. Anger at myself for not being more assertive, demanding that I got a second opinion and possibly asking to be transferred to another GP. I think that I have now got to the 'acceptance' phase.

I have also been working with my counsellor to change my attitude to my illness. I am trying very hard not to let the arthritis stop me from doing things. One of the strategies is to keep a diary or blog to record how I am feeling. In the beginning, when I first received my diagnosis I found it quite difficult to find any information on seronegative arthritis. Even my physiotherapist looked blankly at me when I told her what was wrong with me. Hopefully writing this blog will not only help me but also others who have been given the same diagnosis. It is hard going at times but I feel that I am making progress. Only time will tell if this is really the case.