msif10 pp01-28 english · of the magazine shows how important this problem is for the many people...

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MS in Focus Issue One • 2003

The Magazine of the Multiple Sclerosis International Federation

Issue One • 2002MS in focusIssue 10 • 2007

● Pain and MS

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MS in focus Issue 10 • 2007

Editor and Project Leader Michele Messmer Uccelli,MA, MSCS, Department of Social and HealthResearch, Italian Multiple Sclerosis Society, Genoa, Italy.

Executive Editor Nancy Holland, EdD, RN, MSCN,Vice President, Clinical Programs, National MultipleSclerosis Society, USA.

Managing Editor Lucy Hurst, BA, MRRP, Informationand Communications Manager, Multiple SclerosisInternational Federation.

Editorial Assistant Chiara Provasi, MA, Project Co-ordinator, Department of Social and Health Services,Italian Multiple Sclerosis Society, Genoa, Italy.

International Medical and Scientific BoardReporting Member Chris Polman, MD, PhD, Professorof Neurology, Free University Medical Centre,Amsterdam, the Netherlands.

Editorial Board MembersMartha King, Director of Publications, National MultipleSclerosis Society, USA.

Elizabeth McDonald, MBBS, FAFRM, RACP, MedicalDirector, The Nerve Centre, MS Australia (NSW/VIC).

Nicole Mulasits, Editor-in-chief of Neue Horizontemagazine, Austrian MS Society, Austria, member of thePersons with MS International Committee.

Izabela Odrobinska, President, Polish MS Society,Poland, member of the Persons with MS InternationalCommittee.

Dorothea Pfohl, RN, BS, MSCN, MS Nurse, ClinicalCoordinator, Comprehensive MS Center of theDepartment of Neurology at the University ofPennsylvania Health System, USA.

Paul Van Asch, Director of Physiotherapy, National MSCentre, Melsbroek, Belgium.

Nicki Ward-Abel, Lecturer Practitioner in MS, Universityof Central England, Birmingham, UK.

MSIF leads the global MS movement by

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and treatment of MS and by improving the

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unique collaboration with national MS

societies, health professionals and the

international scientific community.

Our objectives are to:

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national MS societies

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information about MS

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Introduction to pain and MS 4

Prevalence, classification andmeasurement of pain 8

Neurogenic pain in MS 11

MS pain and quality of life 14

Promising psychosocial treatments for pain and MS 16

Cannabis as a painkiller in MS: real or imaginary? 19

Your questions answered 21

Interview: living with pain 22and MS

Pain online survey results 24

Reviews 26


ContentsPain is a common symptom in MS. Those who experiencepain feel its effects on their daily life activities, such as workand recreation, and in their mood and enjoyment of life.

The fact that a record number of people responded toour online survey (results on page 24-25) for this editionof the magazine shows how important this problem is for

the many people who experience pain. Alarmingly, 90 percent of peoplewith MS said they were not completely relieved of pain with treatment.This discrepancy highlights an area that demands attention from healthcare professionals and researchers.

Many clinical features of pain are often unrecognised by clinicians and itmay be difficult for many people with MS to find the right words todescribe the pain they experience. At the same time, scales for evaluatingpain rely on subjective reports and may be biased by any combination ofcircumstances, making the evaluation of pain severity and its impact ondaily living difficult.

Pain is often present with other symptoms, such as depression, spasticityand mobility difficulties, underlining the importance of addressing MScomprehensively. The situation is complicated further by the fact that aperson with MS may also have other illnesses, making the diagnosis andtreatment of pain very complex. Another concern is that in some cases theside effects of pain medication can be as distressing as the pain itself andtherefore cannot be used at an optimal level.

Considering it has a significant influence on a person’s quality of life,unmanaged or ineffectively managed pain can have consequences thatgo beyond issues of symptom management. Therefore, involvement ofthe MS team, including the person with MS and his or her family, isfundamental for the identification, assessment and optimal treatment of pain.

We hope that this edition of MS in focus will clarify some issues related to the diagnosis and management of pain and be a useful resource,particularly for health professionals who may not realise the impact pain has.

Michele Messmer Uccelli, Editor

The next issue of MS in focus will look atstem cells and regeneration in MS.Please send questions and letters [email protected] or marked for theattention of Michele Messmer Uccelli atthe Italian MS Society, Via Operai 40,Genoa, Italy 16149.

Editorial statementThe content of MS in focus is based on professional knowledge and experience. The Editor and authors endeavourto provide relevant and up-to-date information. The views and opinions expressed may not be the views of MSIF.Information provided through MS in focus is not intended to substitute for advice, prescription or recommendationfrom a physician or other health care professional. For specific, personalised information, consult your health careprovider. MSIF does not approve, endorse or recommend specific products or services, but provides information toassist people in making their own decisions.

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Letter from the Editor

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Introduction to pain and MS

Pain in multiple sclerosis? Pain is not a symptomthat is commonly associated with MS. But, whenfindings of worldwide MS research studiessuggest that pain is a key factor in MS, it isimportant that people with MS and their families,friends, carers, MS society staff and healthprofessionals, take a second look at the symptomof pain and its impact on the lives of people withMS. Such studies have revealed thatapproximately two thirds of people with MSexperience pain at some time during the course ofthe disease; pain can be an early and presentingsymptom; pain can be the most debilitatingsymptom, impacting function; pain is under-treated; and that pain is associated withdepression, anxiety and fatigue.

Pain in MS – is this something new?Indeed, knowledge of the experience of painassociated with the diagnosis of MS existed in the1800’s as Jean Martin Charcot associated painobserved in patients with a neurological conditionhe termed insular sclerosis. In 1853, Frenchneurologist Trousseau noted that pain hadepilepsy-type characteristics, guiding scientists’use of anticonvulsants, also known as antiepilepticdrugs, to treat pain. Phenytoin was used tomanage painful tonic spasms in the 1940s, and inthe 1960s, several case studies and isolated

reports of pain in MS emerged. Anticonvulsantswere still first-line treatments at the time. It was notuntil the 1980s that the incidence, prevalence andcharacteristics of MS pain were described throughfindings from population-based studies conductedin North America and Europe. Associations of painwith other symptoms and the psychosocialimplications were further explored in more recentstudies. These studies supported pain as acommon feature in MS and suggested ways ofmanaging the symptom.

Why does pain occur in MS?Pain is a sensory symptom directly related to twooccurrences – the disruption of central nervoussystem myelin and the effects of disability. Myelinspeeds nerve conduction, aiding smooth motoractivity, integration and interpretation of sensorystimuli and effortless cognition. When pain is theresult of a disruption or alteration of nerveconduction, it is termed neurogenic, or having itsgenesis or roots in the central nervous system.Some literature also uses the term “neuropathic”.There is currently no agreement on which term ismore correct.

Nociceptive pain occurs when bone, muscle orbody nociceptors warn of tissue damage which

Heidi Wynn Maloni, PhD, RN, Veterans

Affairs Medical Center, MS Center of

Excellence East, Washington, DC, USA

“Research studies from populations ofpeople with MS worldwide report thatapproximately two-thirds of people withMS experience pain at some time.”

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may result from disability. This can be secondary tomusculoskeletal changes in MS due to weaknessor incorrect posture for example. If a person walksin a different way than normal then joints may bestressed and become painful as well. One of theside effects of steroids is bone loss but this isusually not an issue in MS as they are generallyused for short periods. Immobility can result in aloss of bone density but this is not usually painfulunless it results in a fracture. Nociceptive pain canalso occur when skin breaks down or is expectedto bear weight over an extended time withoutmovement.

How does MS neurogenic pain present? Neurogenic pain is described as continuous andsteady or spontaneous and intermittent, and isreported in varying degrees of severity. One largeNorth American study found that half of thosereporting pain said their pain was continuous andsevere. Intermittent, spontaneous pain ischaracterised as shooting, stabbing, electricshock-like, or searing and is often evoked bystimulus that normally do not cause pain, forexample touch, the weight of bed covers,chewing or a cold breeze can all bring aboutspontaneous neurogenic pain.

Neurogenic pain described as steady is typifiedby burning, tingling, tight or band-like sensations,aching and throbbing. Steady neurogenic pain isoften worse at night, worse during temperaturechange and worsened by exercise.

How can MS pain be treated?Pain is an individualistic symptom that can onlybe described by the person experiencing it.Some altered daily functions, such as sleep,mood, and the ability to work, play and enjoy life,give clues as to the impact of pain on the lives ofthose who experience it.

Assessing the type and the cause of pain isimportant to appropriate pain treatment. Painmanagement is approached medically,behaviourally, physically and in some cases,surgically. Pain is complex and often requires a

multidisciplinary approach and the skills of painmanagement experts.

MedicationIf the cause is neurogenic, medications thatmodulate excitatory neurotransmitters andenhance inhibitory transmitters are prescribed.Medications used in MS pain managementinclude antidepressants and opioids because anincrease in neurotransmitters minimises pain. MSpain is modulated with anticonvulsants (see page7) and antiarrhythmics because they calmexcited nerve firing.

The most common pain syndromes experienced by people with MS include:● headache (seen more in MS than the general population) ● continuous burning pain in the extremities ● back pain ● painful tonic spasms (a cramping, pulling pain)

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Painful tonic spasms, or spasticity, are considereda secondary cause of pain in MS – pain due to asymptom rather than neurogenic. If the cause ofpain is related to disability, meaning muscular orskeletal pain, pain from infection or skin ulcers, itis addressed using common analgesics,antispasmodic treatment or antibiotics, dependingon the cause. The use of medications to managepain in MS is always a balance of risk versusbenefit. In other words, medication side effectsare considered and continually evaluated in termsof their impact on a person’s quality of life.

BehaviouralBehavioural mechanisms for pain managementinclude relaxation, meditation, imagery, hypnosis,distraction and biofeedback. Getting involved inwork or social activities, joining a support group oreven having a good laugh are proven mechanismsto minimise pain. Higher pain severity is reportedby people with MS who are unemployed orhomebound.

PhysicalPhysical agents that minimise pain include theapplication of heat, cold or pressure, physical

therapy, exercise, massage, acupuncture, yoga, taichi, and Transcutaneous Nerve Stimulation(TENS, see photo below) These techniques andtherapies are often overlooked but should beconsidered from the onset of pain symptoms.

SurgicalSurgical pain management interventions aresought when medical, physical and behaviouraloptions fail. Procedures such as regional nerveblocks are reversible and safe. Neurosurgicaloptions, rhizotomy, cordotomy, and Gamma Kniferadiosurgery, are known to offer relief, but carryrisks.

SummaryToday pain is recognised as a common symptomof MS directly related to the disease and itsconsequences. Symptom management is basedon the mechanisms of the pain experienced. Thedirection and focus of continued researchincludes a better understanding of themechanisms of pain in MS and its effectivetreatments. The following articles will providefurther insight into the experience andmanagement of pain in MS.

In TENS therapy low-voltage electrical current issent through the skin via electrodes, stimulating

the nerves in the affected area. These send signalsto the brain that "scramble" normal pain signals.

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Drug Use Side effects

Anticonvulsant drugsCarbamazepine Trigeminal neuralgia Drowsiness

DizzinessCoordination difficulties

Gabapentin Dysesthetic pain DizzinessCoordination difficultiesFatigue

Clonazepam Dysesthetic pain SedationDizziness

Lamotrigine Painful tonic spasms DizzinessTrigeminal neuralgia Double vision

Coordination difficultiesInsomnia

Phenytoin Dysesthetic pain DizzinessPainful tonic spasms NauseaTrigeminal neuralgia Insomnia

Uncontrollable eye movementsCoordination difficultiesSlurred speechConfusion

Pregabalin Neuropathic pain DizzinessDrowsiness

Anti-depressant drugsAmitriptyline Dysesthetic pain Dry mouth

Blurred visionSedationUrinary retention

SteroidsMethyprednisolone Optic neuritis Metallic taste in the mouth& prednisolone Increased heart rate

Hot flashesMood changesDifficulty sleeping

Anti-spasmodic (muscle relaxant) drugsBaclofen Painful tonic spasms Weakness

DrowsinessDizziness

Tizanidine Painful tonic spasms DrowsinessDry mouth

Note: Use in MS is not necessarily an approved indication for the medications that appear in this table. Refer to approved production information forindications on use. Adapted from the Australian MS Nursing Manual, 2004.

Medications used for thetreatment of pain common in MS

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Prevalence,classification andmeasurement of painBrenda Stoelb, PhD, and Dawn M Ehde, PhD, Multiple Sclerosis Rehabilitation

Research and Training Center, Department of Rehabilitation Medicine, University

of Washington School of Medicine, Seattle, Washington, USA

In the past, many scientists and health careproviders considered MS to be a “painless” disease.Many people living with MS, however, mightdisagree with this assumption. Research conductedin the last decade has shown that pain is,unfortunately, common in MS. Recent recognition ofthe problem of pain in MS has increased attentionto and research about pain in MS.

Prevalence of pain While reported rates of pain have been as low as 28percent and as high as 90 percent, the vast majorityof studies that have been conducted indicate thatanywhere from 43-80 percent of people with MSreport MS-related pain. This variability, whileconfusing, may be explained by the fact thatresearch studies use different sources for obtaining

Tools to measure painIn order to determine the optimal treatment strategy for pain experienced by people withMS, a comprehensive assessment of all aspects of the symptoms needs to be undertaken.

Numerical rating scale

Visual analogue scale

Pain body map

no pain

extreme pain

A pain map can be used to locate MS-related pain.extreme

painno

pain

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● Where is the pain located? Which part of the body?

● How long does the pain last?

● How frequently does the pain occur?

● How would you describe the pain youexperience? (Since describing pain can bedifficult for some people, it is helpful toprovide examples of descriptive words, suchas burning, stabbing, throbbing, etc.)

● How intense is the pain? (In assessing intensity,it is helpful to use a visual or other type ofanalogue scale – for examples see left.)

● Does the pain prevent you from performingany usual activities such as working,socialising, leisure activities or householdchores?

● Have you noticed anything that you do thatworsens or improves the pain?

● How much would you say pain affects yourdaily life? (In assessing the impact of pain, itis helpful to use a visual or other type ofanalogue scale – for examples see left.)

● How would you rate the effect of your currenttreatment on pain relief? (In assessing theefficacy of treatment, it is helpful to use avisual or other type of analogue scale – forexamples see left.)

participants (for example, hospital versus outpatientclinic) and different methods for selecting whichparticipants will be surveyed (referred to as“sampling”). According to several European studiesand at least one US study, pain problems may occurmore frequently and with greater severity in peopleliving with MS relative to the general population.

Classifying MS-related pain The World Health Organization classifies painsyndromes as nociceptive and neurogenic (orneuropathic). Nociceptive pain occurs as anappropriate physiological response transmitted to aconscious level when nociceptors in bone, muscle orany body tissue are activated, warning a person oftissue damage, and in turn, eliciting coordinatedreflexes and behavioural responses, such as thequick removal of a hand from something hot.Neurogenic pain in MS is typically initiated by aprimary lesion or dysfunction in the peripheral orcentral nervous system, which has no biologicaladvantage (such as warning) but causes sufferingand distress. Clinical hallmarks are a burning,piercing pain, allodynia (a painful response to non-painful stimuli), and/or hyperalgesia (an increased

response to painful stimuli). In MS, some types ofpain can be experienced over a long period of timeor can be intense but brief. Many people living withMS experience both.

Measuring MS-related pain Researchers and clinicians measure a number offeatures of MS-related pain. Pain intensity refers tohow much a person hurts. This is usually assessedby asking a person to rate how intense or severetheir pain has been during a specified time period ona 0-10 scale, where 0 = “no pain” and 10 = “pain asbad as it could be.” This type of scale is referred to asa numerical rating scale (see page 8). Visualanalogue scales and verbal rating scales can also beused to measure pain intensity. Visual analoguescales typically have images that represent levels ofpain or a straight, horizontal line with one end

Here are some questions that can help health care professionals betterunderstand the pain experience:

“Pain problems may occur morefrequently and with greater severity inpeople living with MS relative to thegeneral population.”

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indicating “no pain” and the other end indicating“worst pain” (see page 8). Individuals are then askedto mark where on the line their pain falls. With verbalrating scales, people with MS are presented with alist of words that describe various levels of painintensity. They are then asked to circle which wordbest describes the intensity of their pain.

It is important to find out not only where a personfeels pain (the pain location) but also what the painphysically feels like (referred to as pain quality).These are most often assessed by simply asking anindividual to describe where they hurt and what itfeels like. For example, a person with MS mightdescribe pain in their legs that is dull and aching,while another person may describe pain in their facethat is sharp and stabbing.

Pain affect refers to how unpleasant or howbothersome the pain is. Pain affect taps into theemotional component of pain; in other words, howmuch distress or disruption the pain causes. Forexample, an athlete in the midst of running amarathon may rate her pain intensity as a 7 on a 1-10-point scale, but be so mentally focused on

finishing the race that she rates her pain affect as a2. Or, an air traffic controller with a mild headachemay rate his pain intensity as a 3, but find it sobothersome due to the demands of his job, that herates his pain affect as an 8. Pain affect can also beassessed using numerical rating, visual rating, andvisual analogue scales.

Pain interference refers to how much paininterferes with or gets in the way of participating in daily activities. Pain interference is typicallyassessed by providing people with a list of commonactivities (such as work, sleep, leisure) and thenasking them to rate how much their pain interfereswith these activities on a 0-10 scale, where 0 = “no interference” and 10 = “unable to carry on activities”.

ConclusionIn summary the understanding and measurement ofMS-related pain has grown and improvedtremendously in the last decade. Continued researchwill help to provide the tools needed for physiciansand therapists to help people with MS to managetheir MS-related pain in new, effective ways.

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Neurogenicpain in MSClaudio Solaro, MD, Department of Neurology, ASL 3 Hospitals, Genoa, Italy

IntroductionPain is defined as an “unpleasant sensoryexperience associated with actual or potentialtissue damage or described in terms of suchdamage”. Although symptom management in MSrepresents a primary focus for health careprofessionals, data available in the literature on painmanagement is lacking. Neurogenic pain commonin MS includes dysesthetic pain, trigeminalneuralgia, painful tonic spasms and Lhermitte’ssign. Ethical issues regarding studies on pain makeit difficult to identify the best treatment strategiesbased on comparisons of medication versus aplacebo. Thus, for many of these symptomstreatment is based on anecdotal information andsmall, unblinded trials.

Dysesthetic pain A number of studies have reported dysesthetic painto be among the most common pain syndromesassociated with MS. Dysesthetic pain is describedas a constant symmetric or asymmetric burningsensation, usually affecting a person’s lower limbs,more frequently distally (meaning farther away fromthe body, such as in the feet and lower legs) thanproximally (meaning closer to the body, such as inthe upper part of the legs). A degree of sensoryloss associated with dysesthetic pain can bedetected during a neurological examination.

First-line medications for the treatment ofdysesthetic pain in MS are tricyclic antidepressants,including amitriptyline, nortriptyline andclomipramine. Anticonvulsant medications such as

carbamazepine, lamotrigine and gabapentin arealso used in treating dysesthetic pain associatedwith MS. Carbamazepine appears to have a higherincidence of side effects, when compared togabapentin and lamotrigine. Some people havedifficulty tolerating this medication due to its sideeffects, and are not able to even reach the dosenecessary for the mediation to be effective. It is notuncommon for a person to try different medicationsbefore finding one that is effective and tolerable.

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Open communication with the neurologist is veryimportant throughout this process.

In general, anticonvulsant medications, as well astricyclic antidepressants, may be useful in some MSpatients, although unfortunately there is not enoughdata available from studies with large numbers ofparticipants, which is necessary for drawingconclusions as to the best choice of medication.

Trigeminal neuralgiaTrigeminal neuralgia (TN) is probably the mostwidely recognised neurogenic pain syndrome inMS. It affects the trigeminal nerve, one of the

largest nerves in the head (see above). Thetrigeminal nerve sends impulses of touch, pain,pressure and temperature to the brain from theface, jaw, gums, forehead and around the eyes. TNin people with MS has been widely studied, withprevalence ranging from 1.9 percent to 4.4percent. TN is characterised by paroxysmal(sudden), episodic facial pain which occurs in thearea of the fifth cranial or trigeminus nerve, oftentriggered by touch, chewing, shaving or even a lightbreeze.

TN in MS and essential TN (TN not related to MS)differ in that TN in MS is more often bilateral

The trigeminal nerve and its branches

Trigeminalnerve

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(occurs on both sides of the face) and tends tooccur at a younger age. Essential TN is mostfrequently caused by a blood vessel pressing onthe nerve near the brain stem. Over time, changesin the blood vessels of the brain can result in ablood vessel rubbing against the trigeminal nerveroot. The constant rubbing with each heartbeatwears away the insulating membrane of the nerve,resulting in nerve irritation. TN in MS is likely to becaused by a plaque at the TN nerve entry zone inthe nerve fibres on the lower front surface of thebrain. However, magnetic resonance imaging(MRI) studies have demonstrated conflictingresults, pointing to multiple causes of TN, even inthe same person with MS. Treatment of TNprimarily consists of anticonvulsant medications.Some antidepressant drugs can also be helpful inrelieving this type of pain.

Non-pharmacological interventionsfor trigeminal neuralgiaWhen medications are ineffective or if theyproduce undesirable side effects, neurosurgicalprocedures are available to relieve pressure on thenerve, to reduce nerve sensitivity or to interrupt thenerve pathway. These procedures have beenreported as treatment for TN associated with MS,although with small numbers of people and limitedfollow-up. These techniques can cause nervedamage which may lead to increased sensitivity ornumbness in the affected area, decreased cornealreflex, temporary difficulty chewing and hearingloss.

Painful tonic spasmsPainful tonic spasms (PTS) are described as acramping, pulling pain and can affect both theupper and lower limbs, although they are morecommon in the lower extremities. The spasms aretriggered by movements or sensory stimuli, oftenoccurring during the night. PTS are estimated tooccur in approximately 11 percent of people with MS.

PTS indirectly result from a lesion triggering thepainful spasms in the central nervous system.Antispasticity medications, such as baclofen and

benzodiazepines, gabapentin and tiagabine, arelargely used for the treatment of PTS.

Lhermitte's signLhermitte's sign, a short-lasting paroxysmal(sudden) pain radiating down the spine to thelower extremities triggered by flexing or extendingthe neck forward, is strongly linked to MS. It isexperienced by approximately 40 percent ofpeople with MS at some point throughout thedisease course. If the phenomenon becomespersistent, small doses of carbamazepine havebeen recommended for reducing the frequencyand severity. Often people with MS who experiencethis symptom do not require medication.

ConclusionNeurogenic pain in MS is variable with differenttreatment strategies. Often these painful symptomscan have a negative impact on a person’s quality oflife, and therefore require involvement of theneurologist and health care team in order to identifyand treat them as effectively as possible. Achievingrelief for neurogenic pain in MS may require tryingdifferent medications and dosages beforeidentifying the most effective solution. Since manytypes of pain common in MS are difficult to treateffectively with standard medications, cliniciansshould also be open to discussing non-standardstrategies for improving pain relief.

Optic neuritisPainful optic neuritis is not neurogenic innature and is probably a unique kind of pain.It is characterised by inflammation of theoptic nerve, with pain occurring behind theeyes which is intensified with eyemovement. In addition to pain, optic neuritiscan be accompanied by blurred vision,visual acuity loss, impaired colour vision andcomplete or partial loss of vision.Corticosteroids (oral prednisone andintravenous methylprednisolone) cansignificantly increase the rate of recoveryfrom optic neuritis.

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MS pain and qPain is common in MS, affecting most peopleduring their disease course, sometimes severelyand often persistently. There are interestingresults from research which compares pain in allpeople with MS in a defined geographical area,and age and sex matched controls or nationaldata. The prevalence of pain is similar betweenMS and non-MS populations, but in MS, pain maybe more severe and produces more impact ondaily life.

A large sample of people with MS drawn from theNorth American Research Committee OnMultiple Sclerosis (NARCOMS) Patient Registryshowed that severe pain was more common inwomen, in those with MS-related disability and inindividuals without higher education. Severe painwas perceived to interfere with many aspects ofdaily life, notably recreation, work and mobility.

Whether analysing an individual or a population, itcan be difficult to understand the relativesignificance of different types of pain, to quantifypain, and to understand its impact on a person.One way to understand the impact of pain is tostudy health-related quality of life in people with pain.

Health-related quality of lifeQuality of life is a complex concept, often difficultto define. For health-related studies, generalconcepts such as life satisfaction or livingstandards are not primarily considered. Insteadresearchers examine aspects of personalexperience that might be related to health andhealth care. Domains that people considerimportant include pain, mobility, activities of dailyliving (ADL), relationships, work, dependence, bodyimage and the future. Most published quality of lifescales measure some of these but none all.However, pain is frequently included.

Measurement of health-related quality of lifeHealth-related quality of life measures can begeneric or disease-specific. Generic measuresinclude areas like pain or mobility which are widely

Carolyn Young, The Walton Centre for Neurology and Neurosurgery, Liverpool, UK

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quality of lifeacknowledged to influence health-related qualityof life. Generic measures are often familiar to awide audience and results can be used to comparehealth-related quality of life between differentconditions. Examples of commonly used generichealth-related quality of life measures are theSF36, EuroQol and the Nottingham Health Profile.However, studying aspects of quality of life whichare associated with a specific condition require adisease-specific health-related quality of life scale.For MS these include the Functional Assessmentof MS (FAMS), or two scales based on the genericSF36; the MS Quality of Life health survey(MSQoL 54) which adds 18 additional itemsrelevant to MS, or the MS Quality of Life Index(MSQoLI) which adds nine additional items.

The influence of pain on quality of lifeThe relationship between pain and health-relatedquality of life is complex and not fully understood.Health-related quality of life examined inpopulation-based studies, which compare allpeople with MS in a specified area to nationalstatistics, report that the physical function, vitalityand general health domains of people with MS areworse than the general population. Other researchhas shown that in MS, mental health correlatedwith pain, and that anxiety and depression inwomen were significantly related to chronic pain.Unpublished British data suggests that people withMS with pain have less energy than those withoutpain. In summary, the available data suggests thatin MS, health-related quality of life may be worse interms of physical function and energy and, ifchronic pain is experienced, mental health may beadversely affected.

Nevertheless these studies also show that health-related quality of life in MS may be relatively well

preserved, with the majority of people satisfiedwith their quality of life. Researchers in quality oflife have long realised that the measured quality oflife of groups may be higher than healthyobservers would anticipate. For example, 50percent of a sample with moderate to severedisability experiencing ADL problems, socialisolation and limited income reported at least agood quality of life, and people with peritonealdialysis or haemodialysis showed higher quality oflife than the general population. This disabilityparadox is explained in part by a response shift –that is, the frame of reference by which a personjudges quality of life may change over time.

It is important to acknowledge the complexities ofanalysing the causes of pain, its relation to MS,measuring pain and relating pain to quality of life.Apart from understanding the difficulties ofmeasuring quality of life over time, researchsuggests that if quality of life is used as anoutcome measure for an intervention, anxiety anddepression must also be assessed as theyinfluence the relationship between disability andquality of life.

We need to consider how pain impacts ondisability and quality of life. Pain, like fatigue andmood, is not well measured in most disabilityscales. Therefore, assessing disability using thesescales will underestimate issues like pain orfatigue that are important to people with MS. Painmay also directly influence an individual’sparticipation in life. This may be because physicaldiscomfort causes social withdrawal, or becausepain worsens mental health (or poor mental healthworsens pain and participation). It is clear thatcareful studies are needed to unravel theserelationships.

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Promising psychosocialtreatments for pain in MS

For some people with MS, medications providecomplete relief from pain. However, many painsufferers do not achieve adequate pain relief bypharmacological means. Fortunately, medicationsare not the only treatment option available for MSpain. A number of non-pharmacologicalapproaches can be used that have been provento be effective in other groups of people withchronic pain.

The biopsychosocial model of painThe experience of pain is very complex, involvingnot only the body but also the mind. Currentthinking is that chronic pain is best understoodfrom a biopsychosocial perspective, whichrecognises the importance of the underlyingbiological basis of pain (for example, nervedamage due to MS). However, it alsoacknowledges that psychosocial factors mayhave a significant impact on the experience ofpain and its effects on life. Some of these factorsinclude one’s emotional reactions to pain andhow one thinks about or deals with pain. Thebiopsychosocial model has led to treatments thatare effective for decreasing pain severity and thenegative impact of pain.

People with pain sometimes worry that othersthink that their pain is “not real”, exaggerated, or asign of mental illness. On the contrary, chronic

pain is a serious condition that is “in one’s head”only because pain signals are processed in thebrain. Advances in brain science have confirmedthat psychological factors such as one’s emotionsor stress can affect physical health, includingpain. Living with MS and pain can also causechronic stress. The brain (mind) and bodyinfluence one another in ways that science is justbeginning to understand.

Relaxation trainingPain and other stressors often result in a naturalresponse of repeated and prolonged tensing ofmuscles, which tends to worsen pain. Researchhas shown that one of the best ways tocounteract the tensing effects of pain and stressis to practice various forms of relaxation. Thereare many methods to achieve relaxation – deepbreathing, baths, music, meditation or prayer forexample. Some relaxation strategies can be triedwithout instruction, whereas others may need tobe learned under the guidance of a professional.

People vary in their ability to relax, so trying avariety of relaxation techniques may be necessaryto find what works best. Relaxation exercises mayalso work best when paired with other copingstrategies.

Deep breathing is the basis for many relaxationtechniques, so it is often a good skill to learn first.It is generally done lying down or sitting in acomfortable chair. The basic method involves

Dawn M Ehde, PhD, and Brenda Stoelb,

PhD, Department of Rehabilitation

Medicine, University of Washington

School of Medicine, Seattle,

Washington, USA

“One of the best ways to counteractthe tensing effects of pain and stressis to practice various forms ofrelaxation.”

MSIF10 pp01-28 English 12/6/07 15:30

17

taking a deep breath through the nose, trying tocause a rise in the abdomen, followed by a briefpause, and then exhaling through the mouth. Toheighten the sense of relaxation, some peoplesay calming words to themselves, such as “relax”or “peace” on each exhalation. To achievemaximum benefit, deep breathing should bepracticed for at least five minutes, several timesper day.

Self-hypnosis trainingResearch published over the past decadesupports the benefits of self-hypnosis training forhelping individuals better manage both acute andchronic pain. Like relaxation training, self-hypnosis is a way to use the power of the mind tomanage pain by altering the experience of pain.This may include distracting from pain, focusing

on more pleasant sensations, or evenexperiencing pain as decreasing or going away.Contrary to how hypnosis is portrayed in themedia, people using self-hypnosis always remainin control of themselves. Training in self-hypnosisshould be done with a professional experiencedin its use for pain. It can often be learned in only afew sessions and should be practiced regularly tomaintain benefits.

Like medications, self-hypnosis training rarely, ifever, eliminates pain completely; nor does itbenefit everyone who tries it. However, thereappears to be a subgroup of individuals, includingthose with MS, who report substantial decreasesin pain severity following self-hypnosis treatmentand who are able to maintain this improvementover time. In addition, unlike some medications,


MSIF10 pp01-28 English 12/6/07 15:30

18


the “side-effects” of self-hypnosis training arepositive. For example, in a study that includedpeople with MS, 40 different benefits of self-hypnosis were identified in addition to pain reliefand no negative effects were reported.

Cognitive behavioural therapyNumerous studies indicate that the way peoplethink can have a big impact on how much pain

they experience, how they deal with pain, andhow much pain interferes with their lives andfunctioning. Things people do to cope with theirpain can also be helpful (for example, usingrelaxation techniques) or unhelpful (for example,using alcohol excessively to relieve pain).Cognitive behavioural therapy (CBT) involvesteaching people how to change their pain-relatedthoughts and behaviours in order to reduce painand its associated suffering. In CBT, individualsare taught to examine the thoughts they haveabout pain, determine whether these thoughtsare helpful or unhelpful, and replace anyunhelpful thoughts with helpful, reassuring ones.CBT often also includes teaching other painmanagement techniques such as relaxationtraining, distraction techniques, or activityscheduling. It typically involves either group orindividual treatment by a professional withexpertise in CBT, and optimally, pain.

Other psychological interventionsOther psychological treatments may be useful inaddressing pain and its impact, including supportgroups, pain education, and psychotherapy.Treating depression, when present, isrecommended, given that depression and painoften impact one another. Physical exercise (forexample, walking, swimming, or yoga) often hasbeneficial effects not only on a person’s physicalcondition but also on pain and stress.

How to find help Unfortunately, many people with MS pain areoffered these treatments only after all medicaltreatments have been tried and found to beinadequate or ruled out. Psychologicalinterventions should be considered early, soonafter the development of pain, along with otherappropriate and effective treatments such asmedications or rehabilitation. The sooner thesetreatments are used, the more likely they are tobe of benefit. For those who do not have accessto specialists in the psychological treatment ofpain, text and web-based resources may beavailable from your national MS society, or viayour nurse or doctor.

Exercise can be beneficial in relieving pain.

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19


Cannabis as a painkiller in MS:real or imaginary?

Marijuana, a forbidden but popular“medicine” It is estimated that 15 percent of people with MSuse the drug hemp (cannabis or marijuana) on aregular basis. Although cannabis does not modifythe disease process of MS, many people believethat the drug relieves their symptoms such asstress, sleep disorders, muscle spasms and painmore effectively than any conventional medicineand they are willing to break the law for theirbelief. Does this relatively high prevalence ofcannabis use among people with MS mean thatthey have found “the most valuable medicine wepossess” as the famous 19th century physician,Dr J Russell Reynolds, said? Or are theyvulnerable people who are victims of a hoax?

An ancient painkiller bannedCannabis has been known as an analgesic agentfor more than 4,000 years and belongs to theplant-drug group that, along with coca and opium,remains in use today. The plant was introduced intoEuropean medicine from India in 1842 to relievepain, muscle spasms, convulsions of tetanus,rheumatism and epilepsy and was used medicinallyas tinctura cannabis well into the 20th century. Butbecause of quality control issues and politicalpressure in a world of growing drug abuse,cannabis was eliminated from the modern Westernpharmacopoeia in 1961 when the United NationsSingle Convention on Narcotic Drugs decided thatcannabis had no medical or scientific benefit. Nowonder – nobody knew at that time that thehuman body possesses its own endocannabinoidsystem with analgesic properties!

How does this endocannabinoidsystem work?Tetrahydrocannabinol (THC) is largely responsiblefor the psychopharmacological properties andphysical effects of cannabis. Interest in therapeuticuses for cannabinoids increased after thediscovery of a human cannabinoid receptor (CB1),anandamide. Anandamide, naturally presentparticularly in the brain, is a neurotransmitter thattargets the same brain structures as THC, theactive ingredient in cannabis. Neurotransmittersare the chemical messengers of the brain. Theywork by transporting electrical signals betweennerve cells. These signals cause changes in thesensations and emotions that we experience.Additionally, CB1 receptors are found on painpathways in the brain and spinal cord and alsooutside the central nervous system, and are

Claude Vaney, MD, Medical Director of the Neurological Rehabilitation

and MS Centre, Montana, Switzerland

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20


thought to be involved in cannabinoid-inducedanalgesia (perceived pain reduction). However, theprecise way in which cannabinoids produceanalgesic effects at these sites remains unclear.

Cannabis studiesFollowing a recent trial, Sativex®, a cannabisextract which is sprayed in the mouth (see photobelow) and contains equal amounts of THC andcannabidiol (another cannabinoid of the hempplant) received approval in 2005 in Canada for thesymptomatic relief of neurogenic pain in MS. In thetrial, 66 people with MS experiencing painfulspasms or dysesthetic pain (uncomfortablesensations such as pins and needles, burning pain,numbness or tightness) received either acannabis-based medicine or placebo in the form ofa mouth spray. Pain and sleep disturbances wererecorded on a visual analogue scale. The treatmentgroup reported a reduction of 2.4 on an 11-pointpain scale (0-10), while the placebo group report areduction of 1.4 points. The participants alsoreported a similar improvement in sleep (Rog DJ etal., Neurology 2005).

The analgesic properties of THC were alsoexamined in a 2004 Danish study where 24

participants with MS who had received THCreported an improved quality of life and felt areduction of their pain (Svendsen KB, BMJ 2004).The participants of the large CAMS study in theUK who took cannabis capsules reported animprovement in spasticity and sleep, and also inpain. Finally a recently published Canadian meta-analysis of cannabis-based treatments forneurogenic and MS-related pain involving 298patients concluded that cannabinoids wereeffective in treating neurogenic pain in MS. Thisreview however, was based on a small number oftrials and subjects (Iskedijan M, Curr Med ResOpin 2007).

In the future – overcoming the barrier of psychoactive side effectsAlongside the positive effects on pain symptomsreported in these different studies, it was alsonoted that the use of cannabis caused side effects,especially at higher doses, such as weakness, drymouth, dizziness, mental clouding, short-termmemory impairment and space-time distortions.These side effects may explain the high drop-outrates in some studies. Recent research studieshave also suggested that excessive use ofrecreational cannabis in young people may lead tomental health problems. Finally, the double blindcharacter of these studies has also beenquestioned because cannabis is psychoactive andtends to make people feel “high.” This means thatpeople taking the active drug during a clinical trialusually become aware of it, thus, “unblinding” thestudy and possibly biasing results. This particularaspect has led some to think that the effects areonly imaginary. Some practitioners believe that forpeople who can tolerate the drug, cannabinoidsrepresent a valuable alternative when pain has notresponded to other drugs.

In the future, the goal of new therapy developmentthat focuses on the CB1 receptor should weigh therisk-benefit ratio of the treatment, because thecurrent relationship between symptom relief andthe psychoactivity of cannabis is unbalanced.Cannabis continues to be a controversial treatmentin MS and remains illegal in many countries.

GW

Pha

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21


Your questions answeredThe Editor, Michele Messmer Uccelli, answers your questions on pain and MS.

Q. I have tried using medication to relieveback pain but it is not working, despite mydoctor’s best efforts. I find exercise –especially swimming – helps sometimesbut not always. Are there any othercomplementary approaches that might be able to help?

A. Since medications for pain are not alwayseffective when used alone, adding acomplementary therapy seems to be helpful forsome people with MS in optimising pain relief. Inaddition to these, a few studies have beenconducted on chiropractic therapy for pain forpeople with MS. Spinal manipulation wascommonly used and people with MS oftenreported pain relief. Further, chiropracticmanagement of chronic pain specifically in MSusing manipulation has been reported to beeffective for low back pain, although this isbased on anecdotal accounts from pain sufferersand not based on well-designed trials. A physicaltherapist or rehabilitation physician should beable to help you assess whether thiscomplementary approach to treating your backpain is right for you.

Q. For about a month I’ve beenexperiencing occasional sharp pain in my left breast. People in my MS supportgroup told me that pain is common in MSand that it’s probably related to mydisease. Should I be worried that it’ssomething else, or is it probably just MS?

A. Breast pain has not been associated withMS in the literature as a type of pain related tothe disease. Remember that having MSunfortunately does not safeguard people fromother illnesses. It is important that you speak

with your general practitioner about the pain youare experiencing so he or she can advise you onwhat you should do.

Q. My doctor doesn’t seem to take my pain concerns seriously and hasn’t reallyacknowledged that it is part of my MS.What should I do?

A. Pain has not always been acknowledged as asymptom related to MS and some people with MSmay find it hard to explain the pain they arefeeling. The result of this may be that manyphysicians, particularly general practitioners, arenot familiar with the fact that people with MS canexperience pain of different types and origins, orthat MS pain is often neurogenic in origin.Whether we’re talking about a general practitioneror other health care professional, you can have animportant role in educating him or her about yourdisease. Many MS societies have literatureavailable on MS symptoms, of which pain isincluded. Helping your health care practitioneraccess this material may be one way in which youcan actively arrive at a solution for having yourexperience with pain acknowledged andaddressed.

MSIF10 pp01-28 English 12/6/07 15:31


22

Interview: living withpain and MS

TF: Would you tell us a bit about yourself?

SP: I am 28 and I live in Sydney, Australia with myMum and Dad. My family is from a Greekbackground and my two sisters and I had a happyand active upbringing. After I was diagnosed withMS in 2001 I took a year off from my magazine jobjust to deal with it all and then, after working for awhile for a television company, I started gettinginvolved at the MS Society. I became an MSReadathon presenter in 2003 and I work at the headoffice doing administrative work. I’ve also recentlybecome an MS ambassador and an MS peersupport worker, so I’m heavily involved and do asmuch as I can.

TF: Can you tell us about your diagnosis of MS?

SP: I got my first symptoms when I was 16 but Iwasn’t diagnosed with MS until I was 22. Therewere all these little things going on at different times.I got blurry eyes, stuttered my speech, had badbalance, a loss of sensation in my skin, and was veryfatigued. At one point I had pins and needles acrossmy whole body for eight weeks, 24/7. I didn’tunderstand what was going on. Each time I went to

my doctor I had blood tests or was given tablets or itwas suggested that I live a healthier lifestyle. Butthen in 2001, the symptoms all hit me at once. I wentto a different GP who referred me to a neurologist.After an MRI, I was diagnosed with MS. I take my MSmedication injections regularly. My symptoms areusually OK, but I’ve had some issues with pain, whichI get as an exacerbation.

TF: What types of pain do you experienceand how often?

SP: It started in 2004 as a sharp stabbing pain inmy right kneecap. I thought I’d sprained it because Iknow that you can’t blame everything on MS. My GParranged an ultrasound and I was told it wasinflammation caused by MS. Within a month it hadspread up and down my leg and then started in myleft leg in the same way. So since then I’ve had sharpstabbing pains constantly in both my legs. In January2006 I started getting a similar pain in the back ofmy neck – this feels like I’m being stabbed with aknife and someone has left it in there and everycouple of minutes they give it a bit of a turn, just so Iknow it’s there. It has been very hard to adjust to that.And then in about June 2006 I started getting sharpstabbing pains in the sides of my neck, in my arms,

Trevor Farrell, Executive Officer,

Queensland MS Society, Australia and

Australian representative on MSIF’s

Person’s with MS International

Committee, interviews Stephen

Papadopoulos who experiences

pain as part of his MS.Stephen Papadopoulos

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23


and in my lower back. The lower back one has alsobeen particularly hard to deal with.

TF: When you say it was difficult to deal with,could you describe to us how the painimpacts on your day-to-day life?

SP: I try not to let it affect me and to do everythingas normal. But the biggest thing is that I can’t drivefor more than 15-20 minutes without my legs reallyhurting. This is annoying because if I get stressed, Ilike to jump in my car, turn the music on and go for along drive, which I can’t do now. I have to use publictransport and at off-peak times so I have plenty ofleg room and can move around. When I go to thecinema my legs hurt and I sometimes need to standup or stretch them out. But I still play sport and goout clubbing and to work. I’m lucky because I havefriends and family who offer to drive me.

TF: Does the pain affect the way you feel?

SP: It does, because all the pain medications I tryare strong and all affect me very differently, includingmy mood. It takes a couple of days for my body toadjust and I get really moody – my friends say thatMS stands for “Moody Steve”. Also I don’t get a lot ofsleep because the pain is worse at night when I amlying still. During the day I can move my legs aroundand it’s not as bad, but when I’m lying in bed, I noticeit so much more. I am lucky if I get three hours sleepa night, which of course makes me moody and tired.

TF: Have you tried using other approaches topain relief such as complementary therapies?

SP: I meditate and do breathing exercises and listento music which doesn’t do a lot for the pain but itrelaxes me and calms me down, especially when I’mtrying to sleep.

TF: Do you find it easy to discuss pain withyour neurologist or other health careprofessionals?

SP: With my neurologist yes; she is brilliant and isreally concerned. She’ll check up on me once a

month and see how any new medication is goingand if there is any change and how I’m feeling. It isharder for my GP to see that I’m in pain. I can tell himwhat I’m feeling but I don’t think he understands itbecause I say it with a smile on my face. To look atme you wouldn’t guess that I’m in pain because Idon’t show it. So I think he finds it hard although hetries to help me as much as he can. But myneurologist has a different approach – she knowsthat the pain is there and that I just cover it upbecause if I’m not smiling and laughing then I’mcrying. I definitely try to take the positive approach tolife and my MS.

TF: Do you have any tips for other people whohave similar experiences as you?

SP: I honestly don’t know – often I am just grinningand bearing it myself. I did the whole sad, depression,feel-sorry-for-myself thing but it didn’t suit me so Imade myself be happy and enjoy life. Sure I can’tdrive long distances, but there are a number ofpeople who are willing to drive me and do things forme. I’m very lucky in that way and I count myblessings. I’m so thankful for my friends and family.Little good things happen all the time, like if I win aCD or have fun hanging out with friends, and I thinkthings aren’t so bad. They could be much worse.

At the end of the day, I’m a happy person. I can walk, Ican see, I can talk, I can work. I live a pretty normal lifeand that is something that I’m extremely grateful for.For me, the key has been doing things like meditationand relaxation. It is not something I would have donefive years ago – I would have laughed and scoffed –but it works for me. Not for the pain, but it works torelax me and make me a happy person. I think that iswhat you have to do – find the trigger to get thebalance. Even though you live with the pain 24/7,there are other things in life that can take priority.

“This feels like I’m being stabbed with aknife and someone has left it in thereand every couple of minutes they give ita bit of a turn, just so I know it’s there.”

MSIF10 pp01-28 English 12/6/07 15:31

Pain online survey results

Three quarters of people surveyed felt that the painthey experience is related to MS, or in other words,was not a separate disease or problem, but part oftheir MS. The most common type of pain experiencedwas dysesthetic pain (burning pain), followed by lowback pain and painful tonic spasms (see graph below).

More than 300 respondents also had types of painthat were not listed, including pain in specific parts ofthe body, such as toothache, genital pain or pain inthe legs. Others reported tingling or pins and needlespain, sharp or shooting pains that radiate around thebody or down the legs or back, painful skin such asthe scalp when hair is brushed, headaches, muscularpain, a feeling of being pressed from the inside out, afeeling that parts of the body are frozen, or evenwhole body pain.

When asked to rate the effect of pain on quality oflife, almost half of respondents (47 percent) rated theeffect as 7 or higher (where 0 is no effect and 10 isan extreme effect), indicating the high negativeimpact pain in MS can have on day-to-day life.

Promisingly, 74 percent of respondents regularlydiscussed the pain they experience with theirneurologist, nurse or other health professional, andthe majority treated pain with medication (77


Types of pain experienced

A record high number of people – 763 – responded to the MSIF online survey

about pain and MS, reflecting the importance of this subject for people with MS.

The results show that people experience a wide variety of painful symptoms as

part of their MS and that it has a big impact on their quality of life.

“The kind thing about my MS pain isthat it travels and does not stay in thesame place for too long!”

“I often wake up at night because of pain.”

“My muscles are very tight and painfulall over my body. I’d say this pain is thesingle most hampering thing of my MS.It prevents me from walking more,

sleeping better, and generally living abetter life.”

“My treatment is hit and miss as mydoctor and nurses don’t view pain aspart of MS.”

“When I was first diagnosed with MS in1981, pain was denied. Now muchmore information is available.”

24

MSIF10 pp01-28 English 12/6/07 15:31

percent). Other treatments were lifestyle changessuch as exercise (39 percent), physical therapies (28percent), and complementary therapies (24 percent)such as hydrotherapy, acupuncture, massage, reikiand meditation.

Amongst other responses were no treatment andjust “living with it”, rest, heat or cold packs, usingmarijuana and using a TENS unit (see page 6). Whenasked how successful the treatment had been, onlyone tenth said it had been very successful, 70percent said it was “somewhat successful”, while 20percent said it had not been successful.

Almost half of respondents (47 percent) said thatthey had found it difficult to find information aboutpain and MS, compared with those who had found iteasy (39 percent). 14 percent had not looked forinformation.

The main source of information about pain was foundto be the Internet (80 percent), followed by MSsociety information booklets and materials (66percent) and a doctor or nurse (60 percent). 14percent of people answered “other”, with mainsources including other people with MS (both atsupport groups and at online chat rooms or by email),books, journals and physiotherapists.

ConclusionPain is seen by many as a major part of their MS anda symptom that can adversely affect quality of life.The wide variety of pain-related symptoms andtreatments listed by people gives an indication of theindividual nature of pain in MS and the difficultyrespondents and their health care team have ineffectively treating pain.


Pain treatment success

25

“I don’t think I have found a good

information source because I have

trouble describing some of the things

that happen. I lack the knowledge of

the disease and the correct vocabulary

to describe it to my doctor.”

“Other friends with MS are often the

best source of information. They get it.”

“The information is there, but the

treatments are not!”

“It is very frustrating at times when most

of the information out there glosses

over pain as a symptom. Not enough

people report pain with MS to make it

matter. It is my biggest symptom along

with fatigue.”

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26


Neurological Rehabilitation of Multiple Sclerosis

Edited by Prof Alan Thompson.Queen Square NeurologicalRehabilitation Series.

Published by Informa Healthcare,2006, 176 pages, price: £60.00,

ISBN: 9781841845593, ISBN-10:1841845590.

The book is written by professionals from a varietyof backgrounds who are experts in the managementof multiple sclerosis. The book aims to provide anevidence base for rehabilitation for people with MS.

There are six chapters, each with a list ofreferences that are useful for MS professionals.The first chapter focuses on the mechanismsunderlying disability and recovery in MS that arecritical for effective rehabilitation. The chapter“The impact of living with MS: the need for acollaborative approach to care” reviews someliterature and provides an insight into the realityof living with MS provided by testimonies frompeople with MS.

In the chapter “multidisciplinary rehabilitation” theauthor describes the roles of differentrehabilitation professionals, the elements of therehabilitation process and a concise literaturereview about rehabilitation treatment for eachstage of MS (minimal, moderate and severedisability).

The fifth chapter is “measuring multiple sclerosisrehabilitation outcomes”, and provides effectiveinformation on the main issues surrounding theuse of rating scales in MS rehabilitation. The lastchapter discusses clinical and organisationalaspects of rehabilitation service delivery in MS.

There is a part dedicated to symptommanagement – mainly with pharmacologicaltreatments. There are only a few rehabilitationindications because it is not a technical book forrehabilitation professionals.

This short book delivers the approaches andprocess required to ensure the comprehensivemanagement of patients with MS in a concise anduser-friendly fashion with the aim to be a resourcefor all people involved in the rehabilitation of MS.

Reviewed by M Laura Lopes de Carvalho, MDPhysiatrist, Medical Director of Italian MS Society(AISM) Rehabilitation Centre, Genoa, Italy.

The MS Workbook: living fully with multiple sclerosis

By Robert T Fraser, George H Kraft, Dawn M Ehde, Kurt l Johnson.

Published in 2006, New Harbinger Publications,Oakland, 243 pages, price: US$19.95, ISBN 1-57224-390-2.

There are numerous MS self-help books, but thisone is different. In most instances the book givesconsideration to its claim to show that there canbe a full life after being diagnosed with MS. And itoffers a lot of ways of how to get there. It glancesat the whole human being: emotionally, spirituallyand physically.

There are 15 chapters including an introduction tothe disease and its medication, alternativetherapies, health promoting behaviours, timemanagement, important aspects of psychotherapy

Reviews

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2727


and job-handling, sexuality, partnership andfinancial planning. These combine to provide abasic knowledge for people recently diagnosedwith MS who need guidance through the firstirritations and confusions.

The layout is reader-friendly and well designedand the book is written in an easy-to-read style.Illustrations and quizzes help ease the readerthrough concentrated information. Checklists andworksheets help readers to evaluate specificsituations and how to meet their individual needs.Some chapters are, however, too specific to theUS for an international audience, particularly thechapter about Social Security.

Though there is a lot of information in the book, insome chapters there is not enough detail, forexample in “perspective on psychotherapy” youwould expect more precise information.

All in all, it is a valuable book that offers a widerange of ideas, advice, and proposals to find yourown way to deal with MS.

Reviewed by Nicole Murlasits, Austrian MSSociety magazine editor.

Living with Multiple Sclerosis

By Christine Craggs-Hilton.

Published by Sheldon Press, price: £7.99, paperback, ISBN 0-85969-982-X.

Living with MS is one of theSheldon Press’s Overcoming Common Problemsseries, which runs to more than one hundredtitles. The author does not have MS, nor give anyindication that she has any background in MS, buthas written on health issues after developing achronic pain condition.

The book, which is 130 pages long, claims toprovide “a straightforward, accessible guide” to

MS “and how best to live with it”. It aims to coverall the bases, with chapters including symptoms,diagnosis, treatment options, diet, causes andcomplementary therapies.

There are a number of problems with the book.Most controversially, it puts too much emphasison diet as being the main cause of MS, being sobold as to claim “the main trigger is believed to bedietary in nature” whilst allowing for “otherpossible triggers”. In the chapter on diet, we aretold, “for a number of people with MS, eating thetype of foods that early man ate can halt theprogression of the condition” before going on torecommend the “Palaeolithic Diet”.

In fact, the book is a giant plug for the so-called‘Best Bet Diet’ that has been promoted in the UKby Dr Ashton Embry and the MS ResourceCentre. After theorising (without presenting anysubstantial evidence) about the role of diet in MS,the book then goes on to give a list of culinarydos and don’ts: no to dairy products, wheat,gluten, beans, eggs and sugar; yes to white meat,fish, fruits and vegetables.

The book is not without some strengths. Thesection on symptoms is relatively comprehensiveas are the sections on complementary therapiesand emotional responses. However, in general thenegatives outweigh the positives. Given the lackof substantial evidence, the book is too focusedon diet as a cause and remedy.

It is also poorly indexed, would benefit from somegraphics, and gives a very limited list of scientificreferences, indicative of the fact that there isgenerally little evidence referenced throughout.

In summary, the book is a compact survey ofcause, symptoms and remedies but is tooconfident in its assertions without presentingsufficient evidence that diet is at the heart of thesolution for people with MS.

Reviewed by Ian Douglas, MSIF volunteer,London, UK.

MSIF10 pp01-28 English 12/6/07 15:31

Subscriptions The Multiple Sclerosis International Federationproduces MS in focus twice a year. With aninternational cross-cultural board, accessiblelanguage and free subscription, MS in focus isavailable to all those affected by MS worldwide.Go to www.msif.org/subscribe to sign up.

Previous issues are available in print or to download from our website:Issue 1 FatigueIssue 2 Bladder problemsIssue 3 FamilyIssue 4 Emotions and cognitionIssue 5 Healthy livingIssue 6 Intimacy and sexualityIssue 7 RehabilitationIssue 8 Genetics and hereditary

aspects of MSIssue 9 Caregiving and MS

With many thanksMSIF would like to thank Merck Serono for theirgenerous unrestricted grant, which makes theproduction of MS in focus possible.

MS in focus

Merck Serono, a division of Merck KGaA, are

specialists in innovative prescription pharmaceuticals

with products available in over 150 countries world-

wide. We have been active in the fight against MS

for over a decade. Through pharmacogenomics, we

are active in research towards understanding the

genetic basis of MS. Merck Serono has a long-term

commitment to people with MS through constant

research and discovery efforts as we look for new

therapies and hopefully, one day, a cure.

Skyline House200 Union StreetLondonSE1 0LXUK

Tel: +44 (0) 20 7620 1911Fax: +44 (0) 20 7620 [email protected]

MSIF is a charity and company limitedby guarantee, registered in Englandand Wales. Company No: 5088553.Registered Charity No: 1105321.

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