dealing with pain and mind/memory problems - myeloma uk · dealing with pain and mind/memory...

Dealing with pain and mind/memory problems

Lisa Ferguson

Myeloma Advanced Nurse Practitioner

Oxford University Hospitals NHS Trust

This talk will cover…

Two complications of myeloma and/or

side-effects of its treatment:

• Pain

• Mind and memory problems

How these can be treated and managed

1. Myeloma and its treatments can cause a number of

complications and side-effects

2. Be aware of these, look out for them and report

them to your doctor or nurse

3. They can sometimes be prevented, and can be

managed and treated so that they have less of an

impact on quality of life

Three take home messages

Side-effects and complications

“A constant daily

grind. Limiting

me physically at

work and in

social terms. You

learn to cope but

it’s hard for other

people to really

understand what

you feel.”

Vote:

Q: Has myeloma-

related pain

affected you?

Pain

Top 5 causes of pain in myeloma

Pain affects up to 80% of patients at some

point during the course of their myeloma.

Results from a

2017 Myeloma UK

patient survey

“My pain is constant and

unrelenting – it gives a feeling

of isolation that no one apart

from me and my husband can

understand. It’s a daily battle

to keep focused”

100%physical effects

60%

55%

social effects

psychological &

emotional effects

100%

How pain can affect you

Pain management

Non-medical treatment

“Take each day as it comes

because every day is different.

Feeling positive helps!”

Living with pain

“Seek support from as

many places as

possible. Hospice

outpatient teams can be

very helpful and also

open up opportunities

for complementary

therapies”.

“Get a really

comfortable

mattress if you are

suffering back and

rib pain.”

Tips from 2017 survey of patients about pain

“Try orthotic

insoles to relieve

peripheral

neuropathy.”

Patient tips

Vote:

Q: Have you

been affected

by mind or

memory

problems?

Mind/memory problems

• A general fogginess,

feeling out of sorts,

struggling to remember

words - usually due to

the effects of treatment

• Fatigue, infection,

stress and anxiety can

make things worse

Chemo brain

Steroids can cause

some troublesome

‘neuropsychiatric’

side-effects

• irritability

• psychosis

• mania

• euphoria

• agitation

• panic

• mood

swings

• anxiety

• insomnia

• depression

• distractibility

• delirium

• memory

loss

The dreaded dex

• Report dex side-effects promptly to

doctor or nurse – doses can be

lowered and/or frequency adjusted

• Try relaxation, meditation or

visualisation techniques

• Take dex in the morning to reduce

insomnia

Managing dex

• Write important details down - use post-its, a

notepad or noticeboard

• Put everything in a diary or wall calendar

• Set alarms and reminders on your phone

• Take gentle exercise

• Do mental exercises like puzzles and crosswords

• Take time in the evening to reflect and process the

day

• Rest well

Mind/memory problems

– self help

“I decided the best plan

was to stop apologising

for my unusual

behaviour, move on and

understand it was just

part of the reaction to

the drugs.”

“Try to prepare for your

‘dex days’. Take a long

walk to tire yourself out,

have a paper to read or

a programme to watch is

you wake and can’t get

back to sleep.”

Tips from patients featured in Myeloma

Matters.

Patient tips

• Pain

• Mind and memory problems

• How these can be treated and managed

Please ask any questions about other complications

and side-effects in this afternoon’s

‘Ask the Expert’ session

This talk has covered…

“Don’t waste time and

energy on things you can’t

do anymore. There are still

lots of things you can do.”

Tips from The small things that make all

the difference book

Patient hints and tips

1. Myeloma and its treatments can cause a number of

complications and side-effects

2. Be aware of these, look out for them and report

them to your doctor or nurse

3. They can sometimes be prevented, and can be

managed and treated so that they have less of an

impact on quality of life

Three take home messages

Myeloma & Me video

‘Roger’s Story - Dealing

with pain’

Myeloma UK resources

Any questions?

Thank you