Living with long-term pain: a guide to self - ARMA - uk.net

102 Pages·2012·2.06 MB·English

Living with
long-term pain
Living with
long-term pain:
a guide to
self-management
INFORM ASSESS RECORD ACT
Arthritis Research UK
Living with long-term pain
What’s inside:
2 A bout this guide – Occupational therapists
– Hand therapists
4 C ase study: An all too common
– Orthopaedic surgeons
story of chronic pain
– Podiatrists
9 S ection 1: Introduction to – How would complementary
long-term pain therapies help me?
– What is long-term pain? – Charity and voluntary groups
– Why do I have long-term pain?
47 S ection 4: Specifc treatments
– What’s the diference between
and therapies for long-term pain
short-term and long-term pain?
– Drugs
– What types of long-term pain
– Cognitive behavioural therapy and
are there?
other psychological therapies
– What can I do to help myself?
– Physical rehabilitation and self-
19 Section 2: About you management approaches
– It’s just pain – or is it? – Pain and movement
– W hat are you doing to manage – How can I increase my
your pain? physical activity?
– Is it working? – Hydrotherapy
– A change of focus? – Pain and daily activity
– What should I do? – Maintaining healthy joints
– Wrapping it all together – Splints for painful joints
– Conserving energy
31 S ection 3: Where can I get
– Relaxation
treatment and advice?
– Getting a good night’s sleep
– Getting the best out of your general
– Coping better at work
practitioner (GP)
– What can I expect from my GP? 63 Section 5: Research and pain
– What types of treatments can – Arthritis Research UK pain research
GPs prescribe? – Our national pain centre
– Who can GPs refer to? – Research into the placebo efect
– Pain clinics/ – Novel research using mirrors
pain management centres – Telephone-delivered CBT
– Psychologists – Other research
– Neurologists 67 S ection 6: Resources
– Rheumatologists and further reading
– Physiotherapists
1
Introduction About you Treatment Long-term Research Resources
& advice pain & pain
We produced this guide following the
About this guide
results of our Active Listening campaign
This guide is aimed at people who have in 2010. We asked people with arthritis
long-term musculoskeletal pain that has to contact us to tell us what was really
become worrying, interfering or, in some important to them, and the biggest
cases, an all-consuming reality. It’s for problems they faced. Overwhelmingly,
people who spend their days unable to do you told us that long-term pain was the
what they want to do or were once able to worst thing about your arthritis. Forty per
do, and can fnd no relief from persistent cent of people who got in touch stressed
pain despite the best eforts of doctors the impact of joint pain and stifness on
and other healthcare professionals. It’s their mobility and the degree to which
for those who don’t know where to turn they were no longer able to manage their
next to seek the relief they so desperately everyday activities. For many, arthritis has
need, leaving them feeling isolated, alone, had a massive impact on their ability to
inactive and let down by society. do activities that ought to be simple and
This guide has been written because ordinary such as bathing, getting dressed,
we realise that there are many people getting in and out of bed, and housework.
who fnd themselves in this situation. Others were frustrated by their increased
A substantial number of the calls that dependency on people around them,
the Arthritis Research UK information and said that their situation was made
line receives are from people with worse by the fact that their pain relief
arthritis who are at the end of their and medication ofered only limited
tether. Despite the improvements and respite. A number reported feelings of
advances in treatment and care for fear, depression and anxiety about their
people with arthritis and other long-term increasing dependence on others,
musculoskeletal conditions, we’re only often combined with a sense of
too aware that the needs of these people isolation and frustration.
haven’t been properly addressed, let
alone met.
We hope this
guide will help you
manage your pain
more efectively.
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Arthritis Research UK
Living with long-term pain
It also became clear to us that many
suferers found their pain management
inefective and, as a consequence, they During our Active
often turned to complementary and
Listening campaign
alternative therapies such as massage,
in 2010, you specifcally
herbal remedies and magnetic bracelets.
told us that:
We don’t pretend that we’ve got a miracle
cure or that we have all the answers, but
we hope that this guide will help you
P ain relief medication ofered only
to take a more proactive approach to
very short-term pain relief, often
managing your pain and, at the very least,
only for an hour or so.
let you know that you’re not alone.
O ther pain relief treatments such
There are sections explaining long-term
as injections and rubs were also
pain, what you can do to help yourself,
inefective.
what you can expect from your GP and
what other NHS services are available to
Pain clinics ofered only minor
you. We have also included information
benefts.
on what drugs and other treatments are
available, as well as the details of other Steroid injections ofered some
organisations who can provide further a few months’ relief but pain
support and advice. often returned, and doctors were
reluctant to ofer more injections.
Often there isn’t one single approach
that will immediately cure long-term
pain, and fnding something that works
for you may require a process of testing,
adjusting, persisting, learning, and even
practicing, to achieve a result. We have
therefore made this report as interactive
as possible to help you really think about
your own experiences and answer the
following questions:
• W hat pain relief approaches
have I tried?
• Why haven’t they been useful?
• What may help me in future?
3
When her pain began, Pat was hopeful
Case study that her GP would be able to get rid of it
or would make a quick referral to a more

specialist service. Her friends told her
An all too common story
their stories of similar problems and how
of chronic pain they were sorted out relatively quickly.
The healthcare professionals that saw
Pat spoke confdently of people they had
People with chronic musculoskeletal treated who have had a similar problem
pain have diferent experiences but to her and who by following one
they often also have some experiences particular treatment or another had
in common. The following is a made-up achieved great results.
story by physiotherapist Gail Sowden
Pat found that diferent healthcare
based on the real-life struggles of
professionals gave her diferent
many patients.
diagnoses, explanations and advice,
which was confusing. She was aware
that, like her, many people’s tests come
back as relatively normal or don’t explain
the amount of pain the person is in.
Pat saw one clinician who she felt said,
or implied, that the pain was imaginary
or psychological or ‘all in her head’. This
was very distressing and Pat felt angry
about this for a long time afterwards. She
had read on a website forum how people
sufering with pain often experience
many years where they feel they haven’t
been heard, believed or taken seriously.
The pain didn’t lessen
As well as conventional treatments, Pat
borrowed or bought a variety of heating,
vibrating and massaging gadgets and
gizmos. She also tried diferent aids,
appliances and adaptations (such as
a walking stick) in an efort to try and
reduce the pain. Occasionally they
seemed to make things easier in the short
term but she worried about becoming
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Arthritis Research UK
Living with long-term pain
dependent on them or more disabled
by them. As time moved on, despite
these attempts to eliminate or reduce
pain, Pat felt that the pain didn’t lessen
or didn’t lessen for as long as promised.
People with chronic
All these treatments and gadgets came
at considerable costs in terms of money, musculoskeletal
dependence, side-efects, time and
pain have diferent
efort, as well as the emotional cost of
managing the disappointment when experiences but
yet another thing failed to deliver
they often also have
what it promised or what Pat had been
told or had hoped for. The more time some experiences
Pat spent trying these things, the less
in common.
time she was able to spend doing
rewarding and enjoyable activities.
Pat worried that if she did certain
activities and her pain increased that this
meant she was causing herself harm or
damage. Not surprisingly, she tried to
avoid doing these activities. She found
that if she did less, sometimes her pain
reduced for a short while – but this meant
that she was doing less of the things that
she enjoyed or that were important to her.
in terms of increased pain later. She found
her concentration and problem-solving
Being in pain started to afect
were not as good as they used to be, and
Pat’s relationship
worried that this might be related to all
The combination of doing less but still
the pain medication she was taking.
being in pain started to afect Pat’s
relationship with her husband, and she Pat found that friends didn’t invite her out
found she was more irritable and short- as much as before and she tended to say
tempered and that they were less able to ‘no’ to invitations, as she didn’t know how
do things together. Pat felt guilty when she was going to be one minute to the
her husband or others did the tasks that next. She didn’t want to let people down
she had previously managed. She didn’t and worried if she said yes and went out
want to lose her independence, and that she would be holding the others back
found on a good day that she would try or would overdo it. She felt increasingly
and make the most of it, only to pay for it isolated and started to wonder if she
might be getting depressed.
5
She hoped the answer She started to lose confdence
was out there The more Pat struggled to reduce or
In spite of all this, Pat continued to control her pain, the more she tended to
hope that the answer was out there avoid the things that were important to
and thought that if she just tried harder, her, such as spending time with her family
demanded more, asked to see another and friends, gardening, playing with
professional, or invested in some other her grandchildren, doing her hobbies
gadget she would fnd the answer. and interests and going on holiday. She
Increasingly, well-meaning relatives and started to lose her confdence in going
friends suggested things or advised out of the house and in meeting people.
she see a particular complementary or
alternative therapist or try some type A pain rehabilitation centre
of new, often radical treatment. Whilst Pat went back to her GP and asked
some of these treatments felt nice and about other treatments. He suggested
relaxing at the time, they failed to provide another course of physiotherapy but also
any long-term reduction in symptoms or mentioned a new pain rehabilitation
increases in activity. Pat felt increasingly centre that had opened. Pat was keen to
desperate as she thought about how fnd out more about what the new service
things used to be and how her life could ofer her and asked her GP to refer
seemed to be falling apart. her to it. Pat attended the service and was
assessed by a team of diferent clinicians.
Pat had heard about diferent injections
They spent time fnding out about her
and operations and her new GP agreed
pain and how it had afected her. They
to refer her to try some injections.
explored Pat’s current medication and
Unfortunately they didn’t work, and
her experience of treatments aimed
although Pat was in severe pain she
at reducing or controlling pain. Pat’s
was told that she was not suitable for
experience was that these hadn’t led
surgery. She was told that operations
to long-term reductions in pain or
are only appropriate for a minority of
increases in function. Rather than repeat
people and that even in these people it
treatments aimed at getting rid of pain
might not help, particularly in the long
or at reducing pain that had already
term. In a way she was relieved that she
been tried and failed, they suggested a
wasn’t suitable for surgery as she was
diferent approach that would involve
aware from previous abdominal surgery
rehabilitation to help her to do the things
that she’d had that there were potential
that were important to her in life, with
risks and complications, no guarantee
the pain. Pat was sceptical at frst as she
of success and often a long and difcult
felt she’d already tried to do this and
recovery period.
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Arthritis Research UK
Living with long-term pain
understandably didn’t want to be in
pain. They asked Pat to identify what she
Further
would like to be able to do in the future in
important areas of her life, and outlined information
the purpose and structure of a group
pain rehabilitation programme aimed at
helping her to achieve her goals. Pat and
the pain team thought that she would
be suitable and might beneft from the
group rehabilitation programme.
Pat attended the programme and felt

that she had benefted from being with
other people who had similar difculties
to her. The programme was hard work This case study is based, with the
and at the end of it her pain was pretty authors’ permission, on one written
much the same as before. However, she by Dr Kevin Vowles and Dr Miles
was able to do more of the things that Thompson in a book chapter in
were important to her. She had a better 2011 (Acceptance and Commitment
understanding of the choices available to Therapy for chronic pain. In L. M.
her in a given situation and what to use as McCracken (Ed.) Mindfulness and
her guide in making decisions about what Acceptance in Behavioral Medicine:
she did and how she went about doing Current Theory and Practice
it. She also felt less distressed by her pain (pp. 31–60). Oakland: New
and was less disabled. She was playing Harbinger Press).
with her grandchildren again, socialising
Gail Sowden is a consultant
more and went on holiday for the frst
physiotherapist with the
time in years. Overall, she felt that she had
Interdisciplinary Musculoskeletal
a much better quality of life and that she,
Pain Assessment and Community
not her pain, was now back in charge of
Treatment (IMPACT) Service in
her life.
Stafordshire and the Arthritis
Research UK Primary Care Centre
at Keele University.
7
1
Introduction to long-term pain
Pain is something we’re all familiar with
and will experience at some point in our
lives, but it’s likely that you’re reading this
because you’ve had pain for a number
of months or perhaps even years.
9 9
Introduction