Tuesday, 21 June 2011

Getting a grip: my inflammatory arthritis onset and diagnosis story - part 1

I would like to tell you the story of my inflammatory arthritis and how it was diagnosed.  At this point, I have to give a big nod to Kelly Young (@rawarrior), because this post is inspired to a great extent by the RA Onset Stories on her RA Warrior blog. These were a great source of information and comfort for me, particularly in the early stages of my journey towards diagnosis and treatment.  They helped to convince me that I wasn't imagining things, that I certainly wasn't crazy, and that I had to pursue the matter and get proper treatment.  I would offer Kelly my story too, if it were not for the degree of uncertainty that still exists about how my condition should be categorised.

Arthritis Care (@arthritis_care) recently published a report called Get a Grip, advocating the need for a national strategy for Musculo-skeletal diseases.  I was struck by one of the headlines they pulled out - 'people with rheumatoid arthritis are seen by their GP an average of four times before they are referred to a specialist for diagnosis'.  This leapt out at me, not just because this was exactly my experience, but because it alarmed me that this is obviously such a common experience.

In the spring of 2009, when my daughter was about five months old, and just as I was returning to work, I began to experience a peculiar stiffness in my feet.  This was particularly noticable when I got up during the night, and first thing in the morning.  Initially, I attibuted this to the stresses and strains of wearing formal shoes again and the extra weight I was still carrying after the pregnancy, and I assumed it would pass.  By the late Summer, however, I was also beginning to experience stiffness in my fingers, which occasionally made it difficult to write or type.  I thought perhaps this was because I had become unused to typing during my maternity leave, or because pushing a pushchair was straining my fingers and wrists.

One afternoon in late August, however, I was working at home and finding that my fingers were becoming increasingly unresponsive and reluctant on the keyboard, and it gradually dawned on me that there might be a relationship between this and what was happening with my feet.  I did a little light googling on the subject of stiff feet and fingers, and it became apparent very quickly that there was a possibility that this might be Rheumatoid Arthritis, so I decided to pay a visit to my GP.

At that very first appointment, the GP's response to my history was 'we have to consider the possibility that this might be Rheumatoid Arthritis', and he ordered some blood tests and prescribed me some Ibuprofen.  These came back negative. I was also referred to a podiatrist, who I didn't see until early December, but who did make me some rather good insoles to take some of the stress off my feet. My next appointment was with a different GP, who because I was still experiencing the same symptoms, ordered some x-rays.  The x-rays showed no damage to the joints.  The details of the third appointment are hazy in my mind now, but I believe we agreed to monitor the symptoms for a few more weeks and see how things progressed.

By November, I was rather unwell.  The stiffness in my feet was such that I had to crawl rather than walk when I got out of bed in the morning.  My baby daughter thought that was a hoot, but I was less convinced.  If I tried to walk, I couldn't balance as my feet were completely unresponsive.  A couple of times I fell with the baby in my arms as I was bringing her into my bed in the night.  My knees and elbows were also affected, and I was wearing sports bandages on them for support and warmth.  I couldn't take any weight on my fingers and wrists, and I was taking the bus three stops to the nursery rather than walk.  And I was tired.  So tired that I had no choice but to take sick days and just sleep.  At the point that this was happening on a weekly basis,  I went back to the GP's surgery.

I saw a different GP again, and I burst into tears on the poor woman when I was trying to explain what was going on.  She asked me what I wanted to happen, so I told her 'I need a rest.  And I need to see a Rheumatologist'.  She signed me off work for two weeks and referred me to a Rheumatologist.

I finally saw the Rheumatologist at the beginning of January 2010.  His assessment was that I was clearly suffering from some form of polyarthralgia, but that it may be a post-partum thing that would resolve itself.  He gave me a steroid shot to see how my symptoms would respond, and it did dampen them down for a little while and allow me to enjoy a fantastic snow day with my daughter.

In many ways, this is only the beginning of the story, but I think I will have to save the rest for another post.


  1. Hey girl! So brave of you to share your story. =) And so scary to be taking care of a little one going through all of that. I don't blame you one bit for falling to pieces at that poor GP's office! I would have too. <3

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