Helen's Story - Arthritis Action

Helen’s Story

My lucky diagnosis

I have to admit that I was very lucky in my arthritis diagnosis. Back in 2005, I went to my doctor for a regular asthma check-up. During our chat he asked me how I felt in myself. I told him that I was generally the same as ever. I did feel quite stiff first thing after waking up, but this always went away after walking the dog. I always thought that was completely normal as you get older. He responded that feeling stiff isn’t something I should expect at my age, and arranged for some blood tests to make sure everything was alright. When the results came back, they discovered I had signs of rheumatoid arthritis, hence my stiffness in the mornings. Within 2-3 weeks I went to a consultant in Worcester, who gave me my official diagnosis.

As I say, I was very lucky being diagnosed so early in my arthritis. The consultant said that I only really had it in my shoulder at the time, and she wished more people would come forward at this stage. Most people leave it until they have pain all over their body, or in places like their hands where it really starts getting in the way. By diagnosing it so early in me, they were able to really halt the condition’s progress.

Don’t get me wrong, my fingers are definitely a little misshapen at this point, but considering I’ve had arthritis for so long I’d say my hands look great! It could have been a lot worse if I hadn’t been diagnosed so early.

Finding the right support

When I went for my appointments in Worcestershire, I never saw a doctor. I was only ever seen by a nurse. I was doing so well in managing my condition myself that I was deemed low priority by the NHS. They wanted me to wait until I got worse before giving me the full attention and support that I needed.

In the end, I went to my GP and I asked to be transferred somewhere else as I didn’t feel as if I was being looked after properly. He recommended me for a different nearby hospital. In short, they were much better! During one of my first check-ups, I mentioned that I was struggling to stand on one of my legs during Pilates. He quickly took a look at my leg and told me that I had osteoarthritis in that foot, ankle, and knee, hence why I couldn’t stand on it. No one had told me that before! My previous nurse had looked at my foot, but it never went any further without a doctor’s intervention.

Once I was being seen by the new hospital, everything felt easier. For example, there is an out-of-hours helpline number that you can call if you ever need to speak to a consultant urgently. In Worcestershire, I didn’t find the helpline useful at all, whereas now it felt more helpful and easier to use. This was even true during the height of lockdown – it felt like they were better resourced and could therefore provide better support for me.

Getting healthier

A few years after my diagnosis, I lost a lot of excess weight. I did this mostly for my own reasons at the time, but within 18 months of losing weight my arthritis went into remission. Of course, I still have good days and bad days. I’m worse when I sit still. It’s annoying because I’m on the go all day, then when I put my feet up to watch tv at the end, it’s then that my joints with arthritis start to ache. But even with that in mind, I would say my pain has never reached pre-weight loss levels.

“I always feel better and empowered after going to the gym, because I’m doing something to manage my condition for myself. I was fed up waiting for other people, so I just got stuck in and helped improve my condition myself.”

During a consultation in 2018, I told them that I’d lost weight and had started exercising, but that I still had flare ups that were bad enough to make me take painkillers to manage the pain. He advised that I should start strength training to build up muscle around my joints. I thought about it and the idea made sense, so after a few months I joined a gym.

I started off my weight training very gently. At first, the pain from training was awful. I hadn’t really exercised before, especially around my arthritis joints, as I worried it might make my arthritis worse somehow. But it turns out that’s not how it works. Each time I worked out it got easier, and I really started feeling the benefit. I haven’t really needed painkillers since I started going to the gym. I still get flare ups, don’t get me wrong, but they’re very short lived and are nothing like the ones I had before I started exercising.

I’m normally the oldest person at the gym, but I don’t let that bother me. I just do what I do. No-one pressures me at all. But equally if I feel like having a go at something new, the trainers are there to help me. I also speak to Martin Lau at Arthritis Action who helps with advice and support for my training regime. I was telling him that I struggle with back squats because of osteoarthritis in my neck, which makes that exercise very painful. He told me what a good exercise back squats were and that I was right to be trying them. He then introduced me to a cushion most gyms have to help support your neck. All I had to do was ask the gym, and they were able to bring out the cushion and set it up for me. Now, I can do this amazing exercise without hurting myself!

I’m a person who gives up on things a lot, but I’ve got the exercising bug now! I feel better for going. It makes my life better. Even if I have to really push myself to get up and go, or if I get home and feel exhausted, the benefits are absolutely life changing. One time recently, I looked down at my legs and thought I found a lump. I got quite scared. But then, I quickly found an identical lump on my other leg. They were muscles! I’m 63 and I have muscles! I wasn’t used to it at all. And now these muscles support my bones and joints, which means I feel far less pain than ever before. I’m so proud of what I’ve done.

What I’ve Learnt

If I’ve learnt anything from my experience, it’s to speak to your GP or healthcare professional as soon as you feel something is off. I dismissed my initial pain because it went away after I walked the dogs, but I’m glad my doctor took it seriously even when I didn’t and looked into it further. As soon as I was diagnosed, I was in a position to do something about it and manage it so that I wouldn’t get any worse.

Secondly, I wish I’d started exercising earlier. I understand why people don’t because it can be hard to get into the mindset of exercising. It can also be physically tough to exercise if you haven’t before, and it can feel painful at first. But the benefits are honestly life changing. Before, I could barely walk for a mile without feeling like I had to sit down for the rest of the day. Now, I walk 5 miles a day and still have energy to get on with my life! I always feel better and empowered after going to the gym, because I’m doing something to manage my condition for myself. I was fed up waiting for other people, so I just got stuck in and helped improve my condition myself. I’d recommend it to everyone.