Donna's Story

Becoming a mum was the best thing that ever happened to me and to develop RA so soon after has been hard to deal with I first became affected by RA in February 2009, 9 months after having my first child. Becoming a mum in 2008 was the best thing that ever happened to me and to develop RA so soon after has been hard to deal with. I have since learnt that pregnancy can be a trigger factor in developing RA for some women.

My symptoms appeared almost overnight, I began to experience aches and stiffness all over my body in the mornings and evenings – it felt like I had been excessively exercising when I hadn’t at all.  I was puzzled as to what could be causing it and I went to see a doctor who put it down to just normal aches and pains and first signs of aging.  I’m only 38 but almost overnight I had been feeling like a 90 year old. I don’t think the GP took on board how bad I was feeling.  Their explanation of my symptoms was that because I was of a slim build I was merely feeling the effects of ageing worse than I would if I was a heavier person.  I was advised to take glucosamine for joint strength and to eat more full fat foods to put weight on.

Again I went to the GP when I developed pain and swelling in my thumb joint that had got worse and had not improved with rest or pain killers.  This was put down to the strain of lifting my baby, pouring the kettle and repetitive tasks like making up bottles of milk.  I was doubtful that this was the cause, however I followed the GP’s advice and continued taking recommended supplements, ate well and began to rely more on pain killers to try and ease the pain. 
 
However, things rapidly got worse.  I was losing weight and I could no longer get up from the sofa after sitting down in the evenings or get out of bed in the mornings without extreme stiffness all over my body.  Even turning a door handle or lifting my baby caused such pain that I was often in tears.  The morning stiffness made dressing and washing difficult and it usually lasted until lunch time, so normal daily routines were affected.  I began to withdraw from seeing friends and couldn’t take part in any social life.  My knee had also become painful and I couldn’t bend it or kneel down, I put this down to just a temporary strain and I didn’t relate it to my swollen thumb.  Soon I was walking with a limp and couldn’t manage to walk even short distances and was relying heavily on using my car to go to the local shops.

Donna's leafletsAfter several months of coping with the pain I was now really struggling.  I desperately wanted to know what was wrong with me.  I even begged one GP to let me try muscle relaxants which as a last resort thought may relieve the stiffness in my body.  Of course they didn’t work, but I was willing to try anything by this stage.  

I couldn’t lie down comfortably in bed, lift my daughter from her cot or cuddle her in the mornings without pain.   I kept going back to see different GPs but with no success.  I was prescribed stronger pain killers and various blood tests where sent off.  The most significant one, which detects presence of Rheumatoid Factor or not, came back negative.   I was at breaking point and had been pinning my hopes on a diagnosis of some kind from the blood test results, although I now know that you can’t diagnose RA from a blood test alone.  I was given hope when another doctor said he would refer me to see a rheumatologist. 
 
After 6 long weeks of waiting, in July this year I got my hospital appointment and the diagnosis of early onset inflammatory arthritis. Like many people, I had a preconceived idea of what I thought RA was – a condition that deteriorates joints and comes on in old age.  I now know from experience how debilitating it is and that it even affects your appetite and energy levels. I was given a steroid injection that day and I was prescribed sulfasalazine tablets.  The injection was like a miracle cure and for almost a week I felt on top of the world. The stiffness was relieved and I was overjoyed the next day to be able to chase my little girl, cuddle her and lift her again.  As the powerful steroids wore off the stiffness returned, but nowhere near as bad as it had been before.
  
It’s still early days for me and I have my blood checked every month to monitor progress.  I can see encouraging signs that the inflammation that causes the stiffness and pain in the body is slowly coming down as a result of the medication I have started. For me, the most difficult thing to cope with about RA is exhaustion.  It has an impact on all aspects of your life – it’s difficult to manage tasks like cleaning, cooking, shopping and caring for a young child when you have no energy at all.  After a period of time this begins to wear you down.  I have had to adjust my life considerably and accept that there are limitations in what I can do – it’s pointless to beat yourself up about it.  Some days just to get washed, dressed and feed us both will be all that I can manage – I’m learning that the rest can wait.  I take comfort from other sufferers who have been in my position and can tell me from their own experience that there will be better days ahead.

I felt very alone and worried for the future when I first had my diagnosis.  Sadly, I don’t feel that the clinics offer as much support as you need at this time.  I imagine this is purely due to a lack of resources.  In my area the rheumatology nurse is only available to answer any questions by telephone on two mornings a week. Friends and family often don’t fully understand the condition either and this adds to the isolation and depression that you feel when you are coming to terms with the diagnosis of any lifelong condition.

Joining the NRAS has been my lifeline. The free information pack that they provide has made me more aware of my condition and I feel more in control. Just knowing that you are not the only one who has been through it can take away some of the strain. The volunteer network means that you can talk to someone on the phone at anytime.

I have learnt that everyone’s journey with RA will be different and that the first year is often the worst. I am relieved that I now know what I have and from here on things will begin to get better.  For me the thing I most look forward to is a better quality of life and enjoying my baby as every new mum should be.  

Winter 2009: By Donna O’Gormley, NRAS Member