“A big part of any arthritis diagnosis is dealing with what it means.”

10 January 2022

My name is Mia and I’m 35, I was diagnosed with rheumatoid arthritis in April / May 2020.

“My diagnosis came completely out of the blue.”

I’m a runner and I had recently bought new trainers, I thought I’d given myself stress fractures in my feet as they were so painful. I couldn’t walk without pain.

I had been suffering for quite a while and eventually I spoke to a family member, a physiotherapist, who thought my self-diagnosis of either stress fractures due to the new trainers might be correct. I went and bought a moon boot for my painful foot and did my physio exercises.

I was signed off work at this point to let my feet heal. Prior to this I had experienced a couple of episodes of complete exhaustion. It was a four-six monthly cycle, and I wasn’t able to explain it. I just told myself I was overdoing it with exercise, my job and life, etc.

“My brother is an anesthetist and I told him my hand and fingers were really painful in the morning.”

The pain in my hands would wear off by mid-morning and I just put it down to my home workout. My brother spoke to his wife, who is also an anesthetist, and they suggested I get a rheumatoid arthritis blood test.

They said, “There’s no way you’ll be positive, but let’s rule it out.” I was also waiting for a Covid result because I needed to work out what was wrong with me. I spoke to my physiotherapist, and I remember her saying, “I really hope it’s Covid.” Now, I understand why!

I also had a video conversation with a GP, who wanted to know why I wanted a test for rheumatoid arthritis. I remember at the time not being able to see the bones in my feet because they were so swollen. Now, I love seeing them.

“My rheumatoid arthritis test came back positive.”

I spoke to the GP who couldn’t offer anything more than saying I needed to see a specialist. I called my mum and had a cry. And my family. And my friends. I needed them.

Thankfully, despite the pandemic I was able to see a registrar a few days later. I must add here that I am very lucky to live in central London and I have access to excellent doctors who were still able to see people in hospital.

“The registrar had no doubt that the test results were correct.”

My blood indicators weren’t really strong, but the registrar felt all of my joints and heard my explanation of my symptoms and confirmed the diagnosis.

She suggested I take naproxen and she prescribed hydroxychloroquine immediately. We agreed not to start on steroids straightaway as she wanted to avoid them where possible. She also gave me all the information about Versus Arthritis.

Since then, I’ve had:

  • two sets of oral steroids
  • one general steroid injection and
  • five steroid injections in my wrist.

I now take:

I have now been taken off hydroxychloroquine.

“The drugs are a lot.”

Methotrexate is a horrible, horrible thing. My side effects aren’t as bad as they were and not as bad as others have told me. BUT it works. It does its job and folic acid helps the nausea.

My biosimilar is incredible. I am so glad it’s now more readily available. I had to be sick enough to be given it. I don’t know where I’d be if I hadn’t been given access.

“A big part of any arthritis diagnosis is dealing with what it means. Rheumatoid arthritis is such an unknown illness.”

I didn’t know anything about rheumatoid arthritis. For someone young, fit and healthy it was a huge shock. But at least I had an explanation of why I had been feeling so awful for months.

I reached out to social media communities and got a lot of information that way and managed to chat to a few awesome newly diagnosed girls. We shared experiences, and information on drugs and side effects, etc. They were ace and really helpful.

“As a baker I was worried about how rheumatoid arthritis would affect my job.”

My work is incredibly physical. We lug around hundreds of kilos of dough each day; we’re shaping bread and pastry with our hands and on our feet all day.

My boss was excellent throughout the whole thing, incredibly understanding and supportive. I’ve been very lucky. I don’t know if I would have the same support in a big business.

In one sense the physicality of my job seemed like it wouldn’t be possible. Now, I think it’s way healthier than being at a desk, not moving, not using my muscles. Although by the end of the week I am completely knackered, I am sure my body is healthier than it would be otherwise.

“It’s been a long road. But I am feeling a lot more stable now.”

My drugs are a lot more settled, although I don’t work on the day after my methotrexate jab, I simply can’t do it. Thankfully, I haven’t had a flare. The thought of that is pretty scary. I still get exhausted and have a fuzzy head now and again, but I am so much better than a year ago.

“My advice to others would be….”

  • Speak to people you trust, who will listen.
  • Keep active when you can
  • Ask your doctors about rheumatoid mental health support. My hospital has a psychiatrist in the department.
  • Push for the support you need from your doctors. I would email and call every day at the beginning. Persevere.
  • Get the prepayment certificate for your drugs.

Don’t put pressure on yourself. Rheumatoid arthritis is so debilitating, and it will take time to get back to some sort of normal. For me, I don’t think I will ever be the same as I was prior to my symptoms starting, but I’ve now come to terms with that.

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