World Arthritis Day

Hi everyone

Since today (Friday 12^th October 2012) is World Arthritis Day, I have decided to write my first ever blog post about my own battle with Rheumatoid Arthritis. I was only diagnosed with RA in August, so I am still in the early stages of treatment and adapting to a new life style. But here is how it all came about.

One morning, at the beginning of June, I woke with a sore knuckle on my right hand. It felt bruised, so I assumed that I had hit my hand against my bed side cabinet whilst asleep and didn’t think much else of it. However, after about a week, it was still as painful and was now bright red. Those who know me know that I am porcelain skinned, so a bright red knuckle was very noticeable. I felt pain with even the slightest touch to my knuckle and especially if I held something slightly heavy in my right hand, such as a cup of tea. My fiancé Jamie thought that I should get it checked out at the doctor, but as I was going to Spain at the end of June for a hen weekend, I decided to leave it until I came back. At the time I didn’t even contemplate that it could be anything serious, so I didn’t see the point in rushing to the doctor for a sore knuckle?!

Whilst in Spain, I noticed that my left foot was looking rather red and slightly swollen. Immediately, I thought I had sun burn on my feet. I always wear socks on holiday because my feet burn so easily, but I had been in and out of the pool, so it was very likely that there was a period of time where my feet were exposed to the sun. And although it was quite painful to walk on, once again, I didn't think much of it. A day or two after we arrived back in England, the swelling in my foot went back down, the redness faded and the pain subsided. My knuckle however, showed no change.

A few weeks later, at the start of July, I woke up with my left foot feeling very painful to walk on again. I had been wearing heels at a wedding the night before, so I just put it down to that. But the day after it felt even worse, and had started to swell in odd parts of my foot. I was worried that I was having an allergic reaction, so I went to A&E. After two hours of waiting, the doctor took two minutes to look at my foot and told me that I had probably done too much walking and had strained it, despite me insisting that I hadn’t walked very much at all. She sent me away with crutches and told me to take some pain killers. I was made to feel like I was over reacting and wasting their time to be honest.

Over the next few days my foot became more and more swollen, it looked three times the size of my right foot, so I had to go to my GP. Straight away she was concerned and thought that there was a link between my knuckle and foot, so she sent me for blood tests and X-rays. It took a week to get an appointment for a blood test and then another week of waiting for the results, which was agonising when my foot was so swollen. But eventually I was referred to a rheumatologist, with an appointment for 21^st August. In the mean time, my GP started me on steroids called Prednisolene, to try and reduce the pain and swelling.The steroids actually worked really quickly, the swelling started to go down in my foot and on some days I could manage with one crutch.

It was tough having to be so reliant on others during my wait for my appointment, but I am very lucky that family, friends and colleagues were great with me. One of the most frustrating parts for me was the judgemental look on people’s faces when they saw me on crutches. I can’t count the number of times people looked at me with a disappointed face and said “what have you been doing?” assuming that because I was young, I had fallen over when drunk. It was so frustrating!!

Then one morning I woke up and felt a new pain, this time in my left clavicle (collar bone). This made it difficult to lift my left arm higher than shoulder height, and made it very uncomfortable to lie down any way other than on my back. The fact that whatever was wrong with me was spreading while I was waiting for treatment made me feel very defeated at times, but I stayed focus on my appointment date to get me through.

When my appointment date came, I was like a kid at Christmas; I couldn’t wait to get some answers and I just wanted to get better. I was quickly diagnosed with Seronegative Rheumatoid Arthritis, which basically means my immune system is making antibodies that are fighting against the tissues in my joints, making them painful and inflamed. Doctors are unaware as to what causes RA.

My swollen index finger

The plan was to start on a drug called Methotrexate, which dampens my immune system to stop it from attacking my joints, but before I could start on it, I had to have several blood tests and meet with a rheumatologist nurse. So I was given a steroid injection which would last for 3 months, as a temporary measure until I could get started on my treatment. The bad news is the injection didn’t work at all, so I had to go back on oral steroids.

After a month of waiting, I still hadn’t had an appointment through to meet my rheumatologist nurse and start my treatment. By this point I had arthritis in my left foot, my middle toe on my left foot, my right ankle, my left wrist, my right middle knuckle, my right index finger, my clavicle and my neck. I was so overwhelmed with pain and swelling, I literally couldn’t do anything without something hurting. My GP doubled my steroid doesage and contacted the hospital personally to rush my appointment. Thankfully a week later I received an appointment to see the rheumatologist nurse for 9^thOctober. 

The whole process of diagnosis and treatment took so many months, it felt like such a long battle, when really it has just begun. In the months I spent waiting to be treated, I kept focus on my appointment dates and getting through each day without too much pain. At the moment, I wake up at 5am each day to take 4 steroids and 2 ibuprofen, and then go back to sleep until I have to get up for work at 6.30am, by this point the steroids and pain killers have had time to start working. After a day at work I am exhausted and struggle to make it to 8pm without my eyes rolling. By 9am I am desperate to sleep, so I take prescribed extra strength cocodamol and ibuprofen and get in to bed, ready to start the next day. 

The weekends are my time for extra sleep and rest, I'm not well enough to do anything with friends or go anywhere. I know that some friends will be thinking badly about me because they haven't seen me for so long, and I never say yes when I am invited somewhere, but the fact is I wouldnt be able to handle it at the moment. I know that the true friends will find out what was going on with me and understand. It's quite interesting to see who has contacted me to make sure I'm okay and who has idly bad mouthed me behind my back for never going out without realising why! 

I have just started taking the Methotrexate on Wednesday, and they say it can take up to 12 weeks to start working, so we'll see how that goes...