Wednesday, 29 June 2011

Somewhere on the Rheumatoid Spectrum: on the road to acceptance

Last week, I started telling you the story of the onset and diagnosis of my inflammatory arthritis.  This is the continuation of that story:

By the time I saw my rheumatologist for the first time, I had already made a significant decision.  My return to work after maternity leave had been disappointing in a number of ways, and I had decided within weeks of my return that I needed to move on.  Happily, the organisation for which I worked was already making cuts, and I put myself forward for voluntary redundancy.  My aim was to slow down, spend more time with my daughter and look after my health.  I planned to work independently, giving me more control over the workload I chose to take on, and allowing me to work mainly from home.

As my illness developed, it gave me hope to know that I would soon be able to relax and take stock.  I spent much of the final three months of full-time employment feeling as though I was very drunk and pretending not to be - making the most of the pools of lucidity when I had energy and could do a few tactical things to keep the ball rolling - but I made it through.  I seriously considered selling up and moving back to my home town to be closer to my family and the support they could provide, but I was not ready to leave the home and the life I had made for my daughter and myself.

I was still working on the premise that what I was experiencing was a post partum thing that would resolve itself in time, so throughout the Summer, I rested.  I did some gentle work on my CV, on raising my profile, on re-establishing connections and networking, and I lined up some consultancy work and a short-term part-time cover post for the Autumn.

But by August 2010, the familiar rumblings in my feet and hands were picking up again. When I saw my Rheumatologist, I asked for a steroid shot to help reduce the level of disease activity and take me through the busy Autumn I had planned.  By November, it was clear that whatever this was, it wasn't going away, but it wasn't getting significantly worse either.   My Rheumatologist now described it as inflammatory arthritis, suggested I use Naproxen to control the ongoing inflammation, and discharged me to my GP for ongoing care.

Looking back, I should not have been surprised that I was not just getting better.  Having read up on Rheumatoid Arthritis and related disorders, I came to suspect this had been developing for a number of years.  As far back as 2003, I had an unexplained 'infection' in my left elbow that caused heat and swelling.  At around the same time, I started having episodes of flu-like illness without the runny nose and congestion.  I remember my boyfriend of the time coming round to see me because I was feeling really ill.  When he asked what was actually wrong with me, I just burst into tears.  I didn't know, and I couldn't explain.  I frequently had episodes like this, where I was unnaturally tired and achy, and just had to sleep if off for a day or two.  It caused problems at work, and I went to the GP about it several times over the next few years.  We did blood tests.  They showed nothing.  So it was a great relief to think that I had finally discovered an underlying cause.  The ongoing aches and pains were not ideal, but they were manageable, and I felt confident that I would be able to live with them fairly happily.

I started 2011 with great plans to capitalise on the momentum I had built up in the Autumn and get things moving on the work front, but this was not to be.  I'd had a bout of flu in December and was extremely tired by the time January arrived, so I planned to take a bit of a break.  I reasoned that this was precisely what my new, flexible lifestyle was all about.  But then the fun and games really started.  I began throwing up on a daily basis, so I stopped taking my Naproxen and went to see my GP.  The vomiting continued, and my joint pain worsened, so I was prescribed Omeprazole alongside the Naproxen.  This helped settle my stomach a bit, but not entirely.  I began to have episodes of shivering and exhaustion on a daily basis.  I felt freezing cold in spite of being wrapped up in a duvet, and had no option but to sleep it off for a couple of hours.  I was so tired that I was keeping the same hours as my toddler.  All in all, it was a bit like early pregnancy, but without the obvious up side!

By March, I was barely functional.  I put all my energy reserves into the days I spent with my daughter and just collapsed on the days she was at nursery.  I started to find that my knees did not have the strength to cycle up the slight incline in the road near my house.  Then one afternoon, my knees and hips completely refused to cycle on the flat, and I had to walk home, clinging to the bike for support.  For a period of several weeks my large joints carried on giving out, and I was scared to venture too far from the house or go too off the bus routes that would allow me to get home.

I think it is fair to say that this was the lowest point I have reached with my inflammatory arthritis.  I didn't know whether I was coming or going, whether to ascribe what I was experiencing entirely to my disease, or whether I was going crazy.  I really felt my isolation, and was deeply frustrated by feeling old beyond my years and beating myself up for not being able to live life as I had hoped and planned.  Thankfully, somehow I had the presence of mind to seek out a wonderful somatic therapist. Her input has definitely fast-tracked the process of coming to terms with my new reality, and helped me to live with the foibles of my body in a more positive way.

I had a tough time conveying the level of exhaustion I was experiencing to my Rheumatologist, and the effect it was having on my life.  My x-rays showed no deterioration in my joints, and he described of my condition as 'not disabling'. While I knew what this meant literally, and I am grateful not to have an agressive form of the disease, I felt it did not acknowledge the minimal level at which I was functioning and the uncertainties with which I was living. In the last couple of consultations, I have established that my exhaustion can be attributed entirely to the disease, and that although it may not be possible or helpful to categorise my disease more exactly at this point, it is 'on the Rheumatoid Spectrum'.  I can live with that degree of uncertainty.  What matters is the nature of the symptoms I am experiencing and how they respond to the treatment options available.  I have recently graduated from NSAIDs to the DMARD Hydroxychloroquine.  We chose that on the basis that it has be shown to be effective in reducing fatigue in related disorders.  It is still early days, but I am hopeful.

So I still don't know quite what this thing is that I'm living with, but I know how it is, for now at least.  And here I am, living in the moment, taking each day as it comes.


  1. I get soooo angry when I read your story! Why in the world didn't your rheumatologist keep track of you better? Argh!!! Let's hope that the start of treatment will help you. Just because your blood tests don't indicate a severe case that doesn't mean it isn't severely impacting your life. Sometimes I just want to choke these doctors! I would like them to live with this stuff for a week or two then tell us how it isn't a severe case...hogwash! And did they test you for lyme's disease to rule that out? Chances are you don't have it but better safe then sorry. And have you also have a thryoid panel done? thryoid problems can mimic rheumatoid arthritis with severe fatigue and joint pain? Again better safe then sorry. I just hope you get on the road to feeling better....That IS what counts here.

  2. Thank you for your story. It seems that every story I read is different, but so familiar. I can always relate.

    Here's the link to my short story:

  3. I take the Hydroxychloroquine (Plaquenil) too, but I just started it on Monday, but I'm hopeful. I'm sorry you had such a hard getting proper treatment. I thought waiting 9 - 10 months for a diagnosis, treatment was bad, but then I find people that have been going YEARS and I guess I lucked out that way.

  4. @Deb - That's exactly why I want to tell anyone who will listen what this really means! It is an unfortunate consequence of the pressure on rheumatology services in my area that I have been passed back and forth between GP and Rheumatologist, but people need to understand the consequences of that. It has taken me a while to work out how to negotiate the system and get what I need. It didnt help that there were periods when I didn't fully understand what was happening to me.

    Thanks also for suggesting other things to test for. I have been tested for thyroid function, but not (as far as I recall) for Lyme disease. I'll ask about that at the next opportunity.

    @Joan - Thanks for sharing your story! I see exactly what you mean about the familiar themes. I'm also really glad to see that you have found a treatment that seems to be working well for you!

    @Melissa - So we're travelling in hope together! I have only been on the Hydroxychloroquine two weeks longer than you. Do keep in touch and let me know how it goes for you. 9-10 months waiting for a diagnosis is bad enough! We really need to raise awareness of this disease, and help health professionals to understand our patient journeys so that they have the information and incentive to improve services.

  5. Thanks for sharing! I just read your onset story and it's so similar to mine. I get so mad when I hear "well your blood work is normal" I got very lucky in finding the right rheumy from the start but my GP made me suffer for 6mo before I went off on my own. Best of luck to you and welcome to the blogging world! Awesome to meet you!

  6. Hi Genny - I've had a look at your blog, and we do seem to have quite a few things in common! Wonderful to meet you too!