The Long and Winding Road to Diagnosis

Jennie Roe Health Guide
  • Greetings!


    While I am fairly IT-savvy and well-accustomed to sourcing information from the web, I am relatively new to blogging.  I have generally played the part of the invisible voyeur, stealthily scrutinising others' blogs to feed my insatiable appetite for information, and only rarely reaching out with a comment or personal message to a kindred spirit.


    Until now.  Now I figure it is my turn to give something back in return for all the support and information I have gleaned.


    But I am no expert;  far from it!  It is not even one year since I was diagnosed with RA, and I still struggle each day with the toll that RA and its treatments exert on my body.  How do I tell what is normal and what is not ... and what is "normal for me"?  What does the future hold?  What things trigger my flares, or even the odd day-to-day aches, pains and twinges? 

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    I keep a diary to try to identify triggers (foods, physical activity, alcohol, shoes, medications, weather, etc) but so far the only pattern I've identified is that there is no pattern!  I guess that, in time, and with the benefit of 20-20 hindsight, I'll be better able to answer these questions and address some of my fears.  But patience has never been one of my virtues ... I wanna know now!


    I have long suspected I might be arthritic at some point in my life.  I took after my Dad's side of the family.  My paternal grandmother suffered from extensive OA for as long as I can remember.  Her mother (my great grandmother) had RA, and although she passed away when I was barely a teenager, I remember vividly how she suffered, though I never heard her complain.  Although this was back in the 1960s when I was just a child, I can still recall her pain, immobility, appallingly deformed fingers, and the funny little bended spoons and other assistive utensils that my inventive great grandfather made for her (long before occupational therapists and the range of appliances we have today).


    But my own diagnosis came out of left field.


    2009 had already been the year from Hell, with major surgery, then a surprise diagnosis of breast cancer, with months of treatment. But I pulled through, with the support of my amazing husband and some equally amazing friends, colleagues and family.  Three months after commencing Tamoxifen (for breast cancer) and the side effects of sudden oestrogen suppression were in full swing (think "slamming headlong into chemically-induced menopause" ... overnight!).  But coinciding with the side effects were some equally sudden joint pains.  They came from nowhere, and seemed to attack every joint, especially in my shoulders, feet, ankles, wrists, fingers, and thumbs.  And then there was the swelling, although it wasn't obviously just in the joints.  For instance, my entire feet were swollen ... of the three pairs of new shoes that I bought six weeks earlier, two no longer fit me, and the third was tight.


    And so began the long trek to diagnosis.  At first, my GP (a very caring, supportive and attentive fellow) questioned whether it was a reaction to Tamoxifen, given the sudden appearance of symptoms that coincided with the other side effects.  It seemed reasonable, so I stopped taking it to see what happened ... the awful hot flushes, night sweats, and hormonally-charged mood swings fell by the wayside. But the joint pains, swelling and hours of morning stiffness continued. 


    Next, we tried Celebrex, paracetamol and rose hip. No improvement ... I might as well have been popping M&Ms, for all the good the meds were doing! Next, I was sent off for a bone scan and blood workup.  According to the bone scan technician, I had "lit up like a Christmas tree!", with lots of arthritic changes throughout my body, some of which appeared to be inflammatory.  But blood tests were inconclusive.  Convinced it was OA, the GP suggested I stay on Celebrex a little longer. 


    More time passed, more visits, more inconclusive blood tests, and all the while the pain worsened. There were days when I could barely walk, and climbing the stairs in our two-storey home became unbearable. I couldn't sleep; turning in bed was incredibly difficult and painful, and the pain of the lightweight quilt on my tender feet was excruciating.  Daily tasks, such as dressing, chopping vegetables, and even using a knife and fork, became increasingly traumatic.  In the end, I had to take extended time out from my job.

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    After one particularly distressing night, I accepted an urgent appointment with a partner in the practice, as my usual GP was unavailable.  This was the start of the breakthrough.  He listened to my tale of woe.  He said that stiffness that lasted as long as mine did each morning was not OA, and was almost certainly inflammatory.  He wasn't bothered by my negative Rheumatoid Factor, noting that up to 20 percent of people with RA returned negative RF tests, especially in the early days of the disease. 


    Plus, he noted that a number of my blood tests in the preceding months indicated increasing inflammation levels.  He sent me for more blood tests, hand and feet x-rays, gave me a prescription for Prednisone, and tried valiantly to get me an urgent appointment with a rheumatologist.


    Later that day, I started feeling better.  The next day, I had a free range of largely pain-free movement, something I hadn't known in months! But the earliest appointment with a rheumatologist was months away, and three hours' drive away from where I lived.  And then my GP called; the latest round of blood tests showed high inflammatory markers and a positive rheumatoid factor.  This was in June 2010, after six long months. 


    The diagnosis was a double-edged sword.  On one hand, I was relieved that I finally had a diagnosis; I wasn't going mad, and I didn't imagine the horrible things that were happening to my body.  But I was equally devastated ... my main frame of reference for RA was my great grandmother, and I was convinced I was sentenced to a future defined by significant pain and disability. (I have since learned that RA prognoses are much better than they were in Nanna's day.)


    Why had the diagnosis taken so long?  The results of a survey released this week from Arthritis Australia provide some clues.  The Ignored Majority - the Voice of Arthritis 2011 reports the findings of a high-level cursory survey of 1000 people with arthritis, and attracted a lot of media attention.  It reported a correlation between a patient's poorly controlled arthritis and their perceived standard of care and access to health care services.  Only one in five of the most affected group felt their GP's knowledge of treatment options was adequate, compared to 94 percent in those who were the least affected by their arthritis. 


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    Some of these results are borne out in my experience.  I live in a rural coastal community - and we have a critical shortage of healthcare workers, making access difficult.  I live just two hours' drive from our capital city, where services are relatively plentiful, but it might as well be a million miles away.  Every appointment with my rural GP  took around three weeks to obtain; this is not unusual in my community. But this clearly impacted the time to diagnosis.  Also, there are no rheumatologists in our region; the nearest are in that same capital city, and about half have closed their books to new patients.  And sadly, many GPs do not recognize the signs and symptoms of RA, which delays diagnosis and, importantly, prompt access to treatment - which we now know is imperative to prevent or delay the joint damage that can occur very early in the disease. 


    I don't blame my GP; not at all.  He probably hasn't seen many people with RA, and particularly those with inconclusive blood tests.  But it highlights the massive effort that is needed to improve awareness about RA, amongst health care professionals and the general community. 


    This won't happen overnight, but we can all play a part in raising awareness of RA.

Published On: March 28, 2011