Information on Chronic Pain for Patients

INFORMATION ON CHRONIC PAIN FOR PATIENTS

f1! Compiled for EFIC by: ~ .,,.... ) Beotrice Sofoer, Dov d Nlv ond Morshall Devor Tab te 01 contents

Introduction

Why am I in pain 7

There is more to chronic pain than ju st hu rting

Chronic pain dese rve s special attention as a di sease in its own ri ght

Where can I get help and advi ce?

What trea tments ma y be offered to me 7

Are there some thing s I could do to help my self?

Master ing the "system"--- patience and communic at lon between the health profe ss ional and patient

About EFIC

About the Artist: Baruch Elron: "Don't Suffer In Silence"

Barucll Elron is a well-known I!gure In Ihe art scene in "-.=",...==:0 Israel. He recenlly underwenl amputation 01 a leg an d knolVS chronic pain personally. In lilis palFlling, Mied "Sharp PalFl", Elron uses autumn COIO UfS to express defoiJation of body and spirit due 10 unremlttmg phantom limb pain. lVi th the scream helpll1g hin) 10 share his suftering ,\ ill> hl5 surroundings. The palFltmg wa s selected from among 250 submiSSIOns al a competltion fointly sponsored by Ihe Israeli pharmaceutical company Ra/a Laboralofl(ls Ud. and the Israel Pain Associa tion al ils annual meeting in Halfa 11/2000. The piece lias ~come Welf known amongst researchers, physiclans ilnd other caregivers In I he (,eid of pa In a5 weil as the publlc al farge slnce il was selec ted by the Europ ean Feder. ticlll oliASP Chapters IEFIC ) as a central illus l ra l lOn lor Ihe 151 [ ulopear. W~ ek Agams l Palll 10cl. 8- J3 2001). to express I he idea: "Oon't Sulfer In Si/ence. The pam l mR also graces Ihe home page of EFl C's web si te ww w fElC.org and , erves JS iJ banner for EFIC's overall iniliallve "Europe Agalnst Pain".

3 Introduction Why am I in pain?

This booklet has been written to help you understand the This is a question frequently asked by people who suffer pain, nature of chronic pain and to assist you to find the be st and on e that is sometimes not so easy to an swer We advice and treatment. You are not alone in suffering ehron ic know that pain is usually a warnin g from the bOdy that pa in. Everybody exper ienees short term pa ln from time to something is wrong. But sometimes the warning system time , but there are surprisingl y man y people , like yourself. itself fa ils and issues an alert that is unneeded, or that is out who hav e experieneed pain over a long period with little or of proportion. Indeed, a pain alarm is somet imes sounded no relie f. when there is no aetual illness or injury at all .

Over the last dec ade or so the re have been many advan ees in the world of medieine. Unf ortunately, there are still no specific 'eures' for many types of ehronic pain. We do, Pai n ean be friend or foe. The most common cause of pain ho we ver, have severa l treatments which may offer part ial is when the body detects tissue injury or some sort of disease. relief (and In some eases eomplete relief), and certain For eommon aches and pa ins the intensity rou ghly matches treatments whieh are only available from health professionals who have particular skills in the treatment of chronic pa in. the physical disorder. If the pain is relieved by eommon pain killers, it is a safe be t tha t it will go away on its own in a Pa in is a eomplex individual experienee wi th sensory, matter of hours or days . If the pa in is alarmingly severe, emot ional and soel al as peets. It is important to un der stand it's a good idea to seek medi eal help as soon as possible. tllat no two people will experience the same pain in the So me people have ree um ng pains, like headaches or sa me way. This is becaus e the mess age s that pain gives to menstrual era mps , that they have learned to recognize as our brain may not be interpreted by one person in the same non-threatenin g. if unpleasant. When the pain alarm ring s way as another person, and beeause our indivi dual experience loud, especially when you're not sure why, the alarm 01 life colours the way we experienee and express our pain. system is doing its job .. . tak e it seriously.

We intend that this short booklet be of so me help to you in understandin g the nature of your pa in problem, and hope that It may aid in your search for a measure of relief. Simple in juries ean beeome inflamed or infec ted, and this tends to prolong the pain. Deep tissue injuries like a sprained ankle , also te nd to last day s or weeks rather than hours. Simple pain killer s, like aspirin, are usually safe and effective aga in st these pa ins. Ho wever , when tak en for weeks at time Beatrice Sofaer, Ph_D., RN these medieations carry an ace umulating risk of serious David Niv, M.D . EFIC President 1999 . 2002 side effects, particularly stomach and intestinal troubles. Marshall Devor, Ph.D., EFIC Committee on Sa f er alternatives are available, and you should eonsult Publications 1999 . 2002 your doctor.

4 5 There is more to chronic pain than just The bigge st probl em is with pain s that shoul d go aw ay but hurting ! don'!. There is no specific time after whi ch a short term The actual pain we feel is bad enough. Bu t when you live pain becomes chronic . This depends on the specific condition. with pain for a lon g time thi ng s can go from ba d to wor se . A simple rule of thum b is that if the pai n has las te d a lot Pa in fre que ntly li mits the ab ility to work, to enJoy one se lf longer than you had ex pec ted it to at l he outset, then you and even to take care of oneself. Ma ny people with ch roni c may have a chronic pain problem. pain le ave th eir jo bs, addi ng a fin anc ia l burden. As ti me drags on with out relief, peop le ten d to t urn inward and get depressed. They may appear self -abs orbed to fa mi ly, Iriends and othe r care rs whic h only in cre ases loneli ne ss and so cial isolation. When pa in and disab il ity app ear to be out Chronic pain som etimes mea ns that there is a persis t en t of proportion to inju ry , a Irequent eve nt with chroni c pain, tissue disorder, such as arthritis. However, sometimes it results carers may withdraw , fe elin g that they ar e being taken Irom a di sorder in the pain al arm sy stem itself. This can ad vantage of. What began as a medical pr oblem freq uently happen, for example, if there has been injury to the nerves ...Iike develops into a problem that engulls the sufferer and everyone a noisy tel ephone line. Some medical conditions are frequen t arou nd. causes 01 nerve pain, sugar diabetes, for example, or shingles. Surgery, particularly in the ehest area , or amputation 01 a body part, may leave you with persisten t burni ng and electric Chronic pain deserves special attention shock-like pa in. as a disease in its own right

It is qui te logica l to assume tha t by repa iri ng the injur y that caused our pain, or curing the precipitating disease, the pain will automaticall y wear off. Spine surgery for the removal 01 The am ount of pain that different people have fOllowing a herni ated disc can sometime s re solve ba ck pain pro blem s. seemingly identical injuries can vary a great deal. One person Howe ver, what if it does not? And what about pain may suffer greatly, while another does not even ne ed minor con ditio ns whe re nothin g ca n be don e to fix the pr obl em

pain relievers. A particul arly distressing, yet not uncommon that ca use d th e pa in, or where no pr oblem ca n be l ound ? si tuation , is when a seemingly minor injury, perhaps just a In thi s all- too-comm on situation treatin g and eliminating pain paper cut, leads to severe persisten t pa ln. We do no t know tak es over as the f irst goa l. Bu t wh en even thi s ca nn ot be for sure why this happens. So me people app ear to be do ne , or ca n only be partly do ne , there still re ma in things predispose d to pain while others seem to be immune. In tllat can be done to improve th e overa ll quality of lile for the part these individual differences may rellect upbr inging or pers on suf l er in g pa in. cultural traditions. Ho we ver, there are more and more indications that pain res po nse may aiso be al fec ted by ou; A lew examples 01 painlul conditiolls wh ere not mu ch can genes. And we have no control over our genes 01 course. be do ne abou t el iminating cau ses 01 pain are:

6 7 Where can I get help and advice?

Headaches and migraine In the first inst ance if pain is not relieved by simple pain killers, After pe rforming exam in ations and analysis to exclude the or persists for much longer th at you think it should under possibil ity th at som eth ing terrible is wro ng with in the skull, the circumstances, you should seek advice from your local all that remains to be done is to treat the pain. family doctor. Your doctor may prescribe medicines or other treatments for further pain reli ef. If this is not successful he Back paln assoclated wlth advanclng age or she may suggest referral to a pain specialist or a pa in relief Surgery is rarely advocated and the onl y remedy is managing clinic. Pain clinics have been set up over the past few years the pa in. specifically to meet the needs of people who suffer chronic pain. Here patients meet with health prolessionals who have a speciallst's understanding of the problems encountered by A,thritic pain peop le wh o experience intense unrelieved pa in . The joints are worn, deformed or infl amed and often cannot be he aled . Pa in control then becomes the main object 01 tre atm ent rather than joint repair.

Paln lollowlng Injury Some pain clinics offer coordinated treatment by a team 01 Whiplash, bone Iractures, torn nerve s, museie strain or health professionals that may incl ude physiotherapists, nurse s, persistent pain foll owi ng surgery ... the cause 01 pain may be counsellors andjor psychologists in ad dition to medical clear, but much 01 the time the only real assistanee that can doctors. This multi-disciplinary approach has evolved bec ause be given is to ease the pai n. it is increas mgly being recognised that chronic pain has a serious effeet on many di ffer ent aspects of the life of the sullerer. In these circ um stances a combinat ion of treatments is often There are a number of specific disea ses which are often the most effective route to improved we ll-bei ng. Some pain associated with pain, for ex amp le: diabetes, blood vessel clinies are run single han ded by med ical doctors. problems, shingles and most types of cancer. It is bec oming Howev er, even where re sources are scarce, the staff will increasing ly clear that two disease s may lurk in each 01 these rec og nise that pain is a co mplex issue involving physical conditions: the parent disease an d the dis ease of ehronic pr ob lems as we il as hum an feelings , and will be able to pain itself. Many times treatment may bring the parent suggest additiona l health care provid ers capable of helping disease under control, or ev en eure it com pletely , wh ile th e with your treatment. chronic pain disease jus t goes on and on. Som etimes both diseases persist for months or year s. But It is amistake to think that if the parent disease canno t be cured, neither can the pain . Management 01 the disease chronic pain requires the specialized knowledge of physicians Sometimes pain cl inics run special programmes to help people trained in this discipline. just as special expertise to ge t their life back on track , and to help them to li ve in may be essential for the successful management a more active and produc t ive man ner, even il there is no of the parent dlsease . immediate wa y of resolving the pain itself.

8 9 What treatments may be offered to me?

Ther e is a wi de var ie ty of treatment s av ail abl e fo r the lollowup adminis trat ion of the medic ine. In conditlon s requiring control of pain Some treat men ts work fo r so me pro lo nged pa in managemen t, th e catheter may be connected people but not for other s. Th ls is be cause pa in is an to a small pump and the complete device implanted und er individual ex per ien ce. the skin.

Medication; Electrical Stimulation : Pain killers ra ng e from weak to st rong. In additi on, you rn ay be prescr ibed pain rn edicin e acco rdin g t o t he specific t ype Pain sen sa tion in certain area s can be redu ced wit h the use of pain you have. Fo r exa mpl e, pai n due to ner ve darna ge 01 elec trical stimulation. Some stimulation devices wo rk weil frequently ha s a pecul iar shooting, burnin g or el ectric shock if app lled on the skin. Other more sophisticated devices like chara ct er. This type of pain rnay res pond to drugs have the ir effect when applied more directly to th e nervou s whi ch ar e not effective f or othe r types 01 pain. Me dl clnes system, lor example, when the stimulation is applied close used for condit ion s suc h as depr ess ion rnay also be used to the spinal cord or even directly to the brain. Normally fo r the relief of pain. Recour se to the se drug s does not the se more invasive pro cedur es are performed only if other, rnean tha t your doctor think s that the pa in is "all in your head". sim pl er method s have failed to relieve the pain.

Drug s can be giv en in rnany way s, an d they sornetimes have unw anted side eff ee t s. Your pain spe cialist rn ay wa nt to Addltionallhlngs thai can be done dis cuss with yo u t he best way for you. A gene ral rul e for There are several painful conditions where an approach pain managemen t using med icine s is to pres cribe them in involving interruption 01 the conduction of pain signal s along established interv als, rather than onl y after pain ha s ap peared, and in low doses, in order to malntain con t inuou s the nervous sy stem rnight be considered. In general, damage paln reli ef wit tl minimal side effec t s. Foll ow-up vi sit s to the to the nervous system is not recommended. However, phy sician will be dedicated to adjustin g the do sage of sometimes abnorm alities such as tumors and deformed joints may your medications or to repl acin g them wi th others un til the cau se uncontrolled pain that can be relieved by blocking most sa ti sf actory re sul ts are obt aine d. In ce rt ain pain nerve s. There are sophi sticated ways to reach the responsible nerve conditions t he onl y truly effect ive re med y is opioids. Used with a needle, gUld ed by fluoroscopy or tomography (X rays), approprlately, pa ylng strict att ention t o the ins truc t ions 1 and to perform a t emporary or a permanent partial 01 your pain doctor, the se drug s are safe, and po se no dan ger of uncontrolled addicti on. ) interruption of the pa in conduction pathway.

Physiolherapy: Injecllons: Con trolled movement and exe rcise 01 painful body parts Some drugs hav e a more pronounced effect if injec ted close to th e si te gen er ating the pa in or along the course 01 the olten help s you to restore function to stiff joints and muscles. nerves that conduct the pain ful sens atiOn. Sometimes there Ac t lvl ty and pain control go hand in hand, with combined is a need to leave a plastic t ube (catheter) in the area lor implications for your mobility an d quality of lile.

10 11 Are there so me thing s I could do to help Pain management programmes: myself ? So me pain cli nie s provide speci al pro gramm es las ting two here ar e som e thi ngs you co ul d do to help yo ur se lf. Most to four weeks duri ng which the palient is taught how to cope with Imp or ta nt, don 't gi ve up hope or th e will to go on, New ideas his/her pa in, and to res tore quality of life and ac ti vi ty even if pa in 3nd disco ver ies are con st antly being made and shared by itself is not co mp let ely re lieved. The se pro gra mm es are more pa in doctors on a world-w ide basis, Pain spec iali sts in Eur ope co rnm on in the Un ite d Sta te s, but are also comin g to Eur ope, me et frequ ently to di scuss new treatmen t s and ap pr oac hes tor helpl ng peop le in pain,

Psychological support: Ma int aini ng phys ica l and mental ac tivity is imp ortant, Tr y to Because pain can have a psych ol og ica l elfect on the lives of take some dail y exercise if at all possible, Walking or sw imming people, and aftec t commu nicat io n and re lation ships, yo u has been fou nd to be par ticul arl y helpful by many peo pl e, may be offered th is typ e of suppo rt as a sup plement to Learn to pace yours elL And when yo u do have a perio d of me di ca l treatm ent. Somet ime s t aik ing to a profess ional pain reli ef, don't ov erdo the ph ysical activity, Wear sens ible co unse llo r or psych ol ogist ea n hel p a person to co pe bet ter wlth ootwear that won' t pu t a str ai n on yo ur pos t ure, Good the nega tive etfec t tha t pa in can have on mobil ity, soc ial Dost ure help s, life, an d rel at ionship s, Relaxat ion or bio -f ee dback are t wo exam ple s of method s us ed by some psyc ho log ists to help peop le ca pe wit h paln, Try to maint ai n your social activities espec iall y by ke ep ing in to uc h with family and fr iend s, If you fee l you hav e to "Ive up an acti vity that you particul arl y en joy, either empo rari ly or perma nently, then do try to repl ac e it Complemenlary Iherapies: th some thing equ al ly s timul atin g or me ntall y eng ag ing, In addi t io n t o the ac ce pt ed medic al treatment s, there are many other types of treatments aimed at the relief of chronic pain that help so me peo ple, For exampl e, ch iropr actors and 1I you ar e empl oye d and doing heavy work, th en ex pl ai n to osteopath s manipul ate joints , and In selectlve case s people rour em pl oye r the iss ues you l ace, Yo u may as k to be can be helped by them. The same is true 01 Chinese traditional red eploye d l or a time to same li ghter ac ti vit y and so avoi d healing methods such as ac upuncture, II you wish to try one fallu re and th e risk 01 losing you r job , 01 these don 't be shy to speak to yo ur pain specia li st. He/ she will mos t probably be ab le to advise on the compl eme ntary the ra pie s mos t suitable for yo ur pain pro bl em , Th e exper ience of chr onic pa in affects not only the su fierer but also the people aro und, especially the clo se famil y, Tr y Whate ver opti ons are offered to you, or that you decide to to share yo ur nega ti ve feeli ngs with the hea lth pr ofess ionals try, it 15 best not to continue if the trea tment make s the pain and save the goo d mome nt s t o share with your family and sympt om s wor se, Iriends,

12 13 Mastering 'the system '-··· patience, and communication between the health professional and patient t is Irequently difficult to pm-po int the ex act cau se 01 the . " Iutian and are willing to "try an yt hi ng". There are paln , and ev en wh en t here is a speci fic diag nosis, different J iscrupul ou s pre dators wa iting to take advan tage 01 thi s patients may react di fferentl y to medlcations . You r do ctor S Jat lO n. In some case s people spend a lot 01 money wit hout may want to try a number of trea tm ents In th e hope 01 a y reali stic pr ospe ct 01 succ ess. And no matter how bad success. This doesn't me an that he 's "just gue ss in g". ')1 r pain is , the wr ong treatment could mak e it war se . Try Sometimes treatments don't wo rk initial ly , but need to be : _ stay with the advice the pain clinic doctor gives you, tried for aperiod 01 we ek s for the eff ec t to build up, and ~ s p ec i ally in relation to taking medication. for t he potential lor reliel to be assess ed . In other ca ses medica tions work at lirst bu t then th eir effect fades . A con sistent, sy stematic trial 01 th e various options is more likely to pay off for you than jllmping Irom doctor to doctor. =ially. tak e pl easure and comlort trom the small things in •~ and t he moments, hours, day s, and weeks that you may ;; e free tram pain. It may take time for health profe ss ional s and patients to develop tr ust, and not eve ry body get s on weil with each other all of the time. You have pr obab ly been through a lot already. Sometimes peo ple fee l frustrated an d angry because their pain is persis t ent. Hea lth pr ofe ssionals fe et eq llally Good Juck to you ! frustrated becaus e their wi sh tor succes s in treat ln g paln is not always met. Not ev erybody has weil developed communication skills and sometimes misunderstandings oc cur. Try to develop an hone st rela t ion sh ip wi th the he alth profe ssionals who are workin g with you. They are there because they do be lie ve you; they ac ce pt tha t you are in pain and wish to help you .

Try not to seek advice Irom too many sources. You wi ll find that you then gel conflicting advic e and tllis can be confusing. Doctors, like eve rybody el se, have th eir favo urite ways of doing things. Some may have had sp eci al training in ce r tain techniques. If a pain do ctor feels you mi gh t benef it from a treatment he or she do es not ca rry out, you may be referred to another speciali st. Equally so, if you feel you might be nefit from some special treatm ent do take the opp ortunity to discuss this po ss ibility with your doc tor. Some pe ople with chronic pain co me to t heir wits end searching for a

L4 15 About EFIC

EFIC, is the Eur opea n Federation of IASP Chapters. (IASP , the International Association fo r the Study of Pain) .

EFIC is a multi-di sciplinary profess ional organ ization in the field of pain sc ience and medicine, and cons ists of health pr ofe ss iona ls from a wide variety of backgrounds including medi cine, nur si ng, physio therapy, psychology and other healthca re pro fe ssions acro ss Europe.

EFIC pr omotes advan ces in pain research, education, clini ca l management of pain, and professional advances and practice related to pain

EFIC aims spe cifi ca lly to create a for um in Euro pe for co ll abora ti on on issues relating to pain and to enhance comm uni cation be twee n profes siona ls at a European level.

For furthe r information on EFIC co nsult ht tp;j/www .EFIC.org

Th anks to Raf a Laboratories Ud. Grap hie Dep artme nt fo r th eir help in the design .and pro ducti on of th is boo klet.

Thanks to th ese ' mem ber s of the pharmaceutical EFIC EXECUTIVE BOARD indu stry who hav e helped with EFIC's Eur ope Aga inst President: Hara ld Breivik, Nor way Pain initiati ve: President Elect: Serdar Erdine, Turkey Imm. Past President: Dav id Niv, Israel Honorary Secretary: Chris Wells, UK • Grunenthal Honorary Treasurer: Jose Cas tro Lopes, Portugal . Janssen - Cil ag

• Med tronic Executive Officer: Sarah Wheeler Web: www.e fic.org Email: [email protected] • Napp - Mundiphar ma

• Pf izer / Ph ar macia Accountant: Anne Nys, Belgium

16 17 EF1C Chaplers

:e fle IS made up 01 the foll owi ng Euro pea n IASP Ch apters • ational Pai n Societies

AUSTRIA

BUlGARIA

ESTONIA ~ GREECE HUNGARY

w O lATVIA ISRAEl ITAl Y

NETHERlANDS POlAND

PORTUGAL ROMANIA RUSSIA

DENMAflK FINlAND ICHAND NORWAY

SWITZERlAND TURKEY UNITED KINGDOM