Learn more about myeloma

This Myeloma Awareness Week, we’re raising awareness of the symptoms of myeloma by sharing examples of myeloma symptoms in people’s own words.

What is myeloma?

Myeloma is a blood cancer, that is currently incurable.

Everyone’s experience of myeloma is different, and each person has their own journey. But we’re here to make sure no-one faces myeloma alone.

At any one time, there are around 24,000 people living with myeloma in the UK. Myeloma mainly affects those over the age of 65, however, it has been diagnosed in people much younger.

While the risk remains relatively low, myeloma is 2–3 times more common in black people than white people. Myeloma is also more likely to affect black people at a younger age than people from other ethnic groups.

Why is it so important to know the symptoms of myeloma?

The symptoms of myeloma are vague and can be hard to explain. All too often, it’s mistaken for minor conditions or ageing, and left to progress untreated, leading to further harm. Too many people in pain, with broken bones, infection or fatigue, only find out they have myeloma in A&E. 

1 in 4 myeloma patients waits over ten months to get the right diagnosis, and almost a third of patients are diagnosed through an emergency route. By raising awareness of the symptoms we aim to improve early diagnosis of myeloma. 

Sometimes medical professionals and patients use different language to describe the same thing which is why we’ve designed a symptom translator to help with those conversations.

Sophie Castell Bio Photo

“Every day counts while you’re waiting for a diagnosis, and yet a third of patients visit their GP at least three times before being diagnosed. One of the biggest barriers remains identifying the symptoms quickly and before too much damage is done. We know that doctors and patients can use very different language to describe the same symptoms, so this Myeloma Awareness Week we’re launching a symptom translator to help with these conversations and ultimately get people the diagnosis they need.”

Sophie Castell, Chief Executive of Myeloma UK

The most recognisable symptoms of myeloma

Pain

Persistent pain, usually in the back, ribs or hips, without a clear cause that doesn’t go away even when resting

It might feel like:

“Bones were aching, felt as if my bones were being squeezed in a device”

or

“It was like a small elastic band was pulling my shoulder blades together. When I tried to lift my arms to brush my hair, the elastic band got even shorter and tighter.”

Easily broken bones

Breaks or fractures to bones – particularly in the back, rib cage or hips – that happen more easily than they should

It might feel like:

“Lying flat in bed became impossible, I used to sleep sat up in a chair. When I lay flat I felt
like I couldn’t breathe.”

or

“My fall from a low stool initially felt like I might have caught a nerve, due to the sharpness of
pain. I didn’t imagine a fall from less than a couple of feet would cause my bones to break.”

Fatigue

Persistent tiredness or breathlessness that can’t be explained by anything else

It might feel like:

“I was able to do 10,000 steps a day but this fell to 2,000 or less.”

or

“I could fall asleep anywhere very quickly even if I had slept all night. I could be falling
asleep after breakfast!”

Recurring infection

Recurring or persistent infections e.g. throat, chest or urinary

It might feel like:

“Lots of chest infections and picked up any illnesses going.”

or

“Had urine infection it would go away for a while but always came back.”

What to do if I think I might have myeloma?

If you think you might have one or more of the symptoms of myeloma, it’s really important you speak to your GP.

We have designed a symptom translator to help facilitate better conversations between you and your GP. This translator will help you and your GP match real-life descriptions of symptoms from myeloma patients with the medical definitions and offer them tools and resources to support them in making a diagnosis.

It might take more than one appointment for your doctor to put the pieces of the puzzle together so don’t be afraid to keep pushing or ask for a second opinion.

You can also call our Myeloma Information Specialists on 0800 980 3332 or email them on askthenurse@myeloma.org.uk for support and advice on what to do next.

“One of the biggest problems is ‘medical talk’. Speaking the same language and using the same terminology is very important. I’m still learning now.”

Mia, living with myeloma on why the symptom translator is so important
Close-up photograph of a hand holding a mobile phone.

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