The Diagnosis I Wasn’t Expecting

In April 2019 I started to experience some fairly out of the ordinary symptoms. Generally mixed and at the time, I thought unrelated. Most days I was feeling pretty unwell.

I made several GP appointments, each time being told I ‘probably had a virus’ and ‘if you don’t feel better in a couple of weeks, come back’.

Fast forward three months and my symptoms were pretty persistent, if anything getting worse. By this time, I was becoming anxious about even calling for an appointment with the GP in fear that they might think I’m a hypochondriac. Nevertheless, I called once more.

The GP that I saw was amazing. I handed her a scrap piece of paper with every symptom I’d been experiencing since I first noticed. She immediately recognised that I couldn’t just have a virus and ordered some bloods.

Several appointments and blood tests later, I was referred to Rheumatology. Now, I am extremely lucky to have private medical insurance with work so my diagnosis came much faster than the NHS and I am eternally grateful for this privilege.

My Rheumatologist was amazing too. He took everything I’d been given by the GP, took more blood, took all kinds of samples, sent me for an MRI, took photos of my symptoms and within four weeks I had a pretty solid diagnosis.

Lupus.

Wonderful. My first thoughts were – what on earth is Lupus?

To be honest, I guess I still don’t really know. I was diagnosed with Acute Cutaneous Lupus, which mainly affects the skin. Although, it comes with a whole host of other symptoms that have an impact on my day to day life.

There are not many visible symptoms of this autoimmune disease, which can make it difficult for other people to understand the distress it can cause. My symptoms started with flu- like aches, migraines and an urticarial rash over my arms, thighs and tummy. The rash has persisted for over six months, appearing over various areas of my body. It comes and goes, sometimes it’s incredibly painful and uncomfortable, others I don’t know it’s there unless I look at it.

Urticarial rash to left arm
Acute Cutaneous Lupus – Rash
Urticarial rash on left thigh
Acute Cutaneous Lupus – rash
Acute Cutaneous Lupus – Urticarial rash to stomach area
Acute Cutaneous Lupus – rash over shoulders and back

Other symptoms that I experience include extreme fatigue, confusion, loss of memory, aches to joints, Raynaud’s Phenomenon to my fingers, insomnia and anxiety. The list could go on.

Getting a diagnosis for this wasn’t easy. It involved a lot of blood tests for specific antibodies that helped to confirm it alongside my symptoms.

Treatment wise, I’ve only just started. It’s not something I imagined I would ever live with and it will take a lot of getting used to. Some days I’m ok with it, some days I struggle to get my head around it. Most of the time I have to take care of myself. Lots of rest and taking things easy. I stopped drinking alcohol, partially changed my diet and introduced more exercise. These changes help alongside medication but it’s not cured. I don’t know if it ever will be.

I didn’t write this post for sympathy points, please don’t feel sorry for me! I’ll be ok. I don’t have the energy to explain to everyone that asks about my illness, so if I have it in writing it’s easy to convey.

If you, or someone you know is suffering with a whole host of symptoms and hasn’t been to see a GP, please go! Write a list like I did. Get the ball rolling and if your symptoms are similar, it may not be the same! There are many autoimmune disorders that manifest with the same symptoms.

For more information about Lupus:

NHS – Lupus

Lupus UK

Sometimes people who are sick won’t make you aware. Please be sensitive to other people’s needs and feeling and please don’t ever tell someone that they ‘don’t look sick’ because you have no idea what’s going on underneath.

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