Managing myeloma pain

At some stage, pain will affect most people living with myeloma. Each person’s experience of pain is personal and complex, with physical and psychological parts to it. That’s why managing pain often involves several different health professionals, medicines, treatments and tools. 

We have outlined some key information about myeloma pain on this webpage. If you would like to read more, see our infosheet below.

Understanding pain

We experience pain when pain receptors in our nerve endings send a signal to the brain that there has been some damage. The brain responds by telling the body to protect itself, minimising potential harm to the body. Most pain is resolved once the cause of the pain is removed — this is called acute pain. Sometimes, pain continues even after the body has healed — this is called chronic or ongoing pain.

Our experience of pain is complex and has both physical and psychological parts to it. We usually think of pain as being linked to physical factors such as illness, inflammation, surgery or injury, but it is also linked to our experiences, memories and emotions. When you live with pain, especially ongoing pain, it can have a significant psychological impact, causing frustration, anxiety, a low mood, sleep problems and fatigue. In turn, these can affect the level of pain you feel and can spill-over into how you manage many other areas of your life. 

What causes pain in myeloma?

There are many potential causes of pain in myeloma: some pain is caused by the disease itself, and some pain can be a side effect of treatment.

• Bone disease
• Peripheral neuropathy
• Cramps
• Infections
• Treatment side effects
• Tests and medical procedures

The bone pain I experienced in my back at diagnosis was intense! I thought it would never go away, but once I had radiotherapy and started treatment, I was pain-free after a couple of months.
– Lucy, Queensland

Talking to your treating team about pain

Clearly describing your pain and how it affects your daily life will help you and your treating team to work out the best pain management plan. It will also help to give both of you a baseline so you can measure how well your pain management plan is working.

Your team may ask you: 

• Where is the pain? 
• When did it begin? 
• Does it move anywhere else?
• What does it feel like? Is it sharp, dull, throbbing, burning, or some other sensation? 
• Does pain prevent you from doing daily activities such as showering, dressing, working, gardening or walking? 
• Does anything make your pain feel worse or better?
• What pain relief have you tried? How much has it helped? 
• Is the pain constant? If not, when does it occur? Are there different days or times that it is worse? 
• Has your pain recently become worse? 
• Do you have any other symptoms that occur with your pain? 

Do your best to answer these questions and explain your pain honestly. It can be difficult to talk about pain and to admit how much it affects you, especially if you are used to ‘being strong and carrying on’. But the more honest you can be, the more your treating team can help. 

Don’t sit at home in pain. Tell your doctor or nurse. They can help!”

-Rishi, South Australia

Treating myeloma pain

The aim of treating pain is to provide you with adequate, constant relief, with as few side effects as possible. Often, myeloma pain can be relieved by treating the disease itself, and so your response to treatment can play a big role in reducing your pain and improving your quality of life.

Every person’s experience of pain is different, and this means that pain management needs an individual approach so that the best treatments can be used to achieve the most relief. It often takes a process of trial and error to find the best plan to help control your pain. 

Fortunately, there are many different pain relief options available for myeloma-related pain. With the right plan, most people can have more control over their pain, which can make life easier to manage.

The most commonly used tools for managing myeloma pain include:

Medical pain management options

• Anti-myeloma therapies
• Pain relief medicine (analgesia)
• Bisphosphonates (to treat myeloma bone disease)
• Radiation therapy
• Surgical procedures

I made some temporary lifestyle adjustments to the activities that I usually enjoy while my treating team and I were increasing the dose of my pain relievers. Once this was done, I was able to reintroduce my favourite activities.

– Xia, Western Australia

Physical, psychological and complementary therapies

• Transcutaneous electrical nerve stimulation (TENS)
• Acupuncture
• Massage therapy
• Hot and cold packs
• Relaxation, meditation and distraction techniques
• Correct positioning
• Exercise

Please remember that not all therapies are suitable for all people, so always ask your treating team about any new therapies you are planning to try.

I worked with my treating team and pharmacist to look at complementary therapies that could help alleviate my pain whilst not interfering with my treatment medicines.

– Elena, New South Wales

You can read more about some of these complementary therapies such as massage and acupuncture on our Complementary therapies webpage.

Where the palliative care team fits in

Complex pain is often managed by a palliative care team, which can be made up of doctors, specialist nurses, psychologists, physiotherapists and occupational therapists who have expertise in cancer care and pain management. 

There is a lot of misunderstanding about palliative care, with many people thinking it is only about providing end of life care. But palliative care is actually all about providing specialist care in pain management and symptom control at all stages of an illness. You can be referred to a palliative care team at any time in your treatment pathway with myeloma, so it’s helpful to be open to how this team can help you. 

The palliative care team has many available pain management tools and can provide guidance on which treatments might be the most helpful, and can also provide holistic support for you, your family and carers.