Complex Regional Pain Syndrome

  Complex Regional Pain Syndrome               affa  sair   for  sufferers  of  chronic  pain     www.facebook.com/groups/affasair   ARTICLE  B...
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Complex Regional Pain Syndrome

 

            affa  sair   for  sufferers  of  chronic  pain     www.facebook.com/groups/affasair  

ARTICLE  BY  The  Princess  in  the  Tower  |  princessinthetower.org     Complex  Regional  Pain  Syndrome  (CRPS),  is  an  excruciating  chronic  and  complex  disorder  of  the  autonomic   nervous   system   (dysautonomia),   leading   to   constant   pain   that   is   recorded   as   being   as   severe   as   finger     amputation  without  anaesthetic.     It  is  devastating  for  patients  as  is  often  diagnosed  too  late  for  full  remission,  though  it  is  vital  to  never  give   up   hope,   people   can   and   do   go   into   remissions   but   sadly   [at   the   moment]   it   is   only   a   small   percentage.   However,  with  more  research  being  done  into  this  complex  condition,  our  knowledge  of  CRPS  is  evolving   and  hopefully,  we  too  as  patients  may  benefit  from  that  research.   Currently,  CRPS  is  considered  to  be  a  condition  that  includes  interactions  between  the  immune  system,  the   ANS   and   the   Central   Nervous  System   (CNS).     There   are   a   huge   number   of   coexisting   symptoms,   many   of   which  are  incredibly  hard  to  deal  with  simply  as  they  are  so  contrary  to  both  how  we  appear  (often  looking   healthy)  and  how  at  odds  they  are  to  ‘normal’  healthy  human  behaviour.    Pain  being  caused  by  sound  is   one  example.   Stating  that  someone  needs  to  step  back,  because  the  allodynic  pain  of  them  standing  too  close  is  making   your  nerves  go  crazy,  or  asking  someone  to  speak  more  quietly  or  stop  rustling  a  plastic  bag  all  sound  very   strange   yet   these   things   can   cause   our   already   excruciating   pain   to   crescendo   and   magnifies   our   symptoms   and  discomfort.   CRPS   is   a   severely   disabling   condition   characterised   by   burning   pain,   increased   sensitivity   to   all   stimuli,   and   sensations   of   pain   in   response   to   normally   non-­‐painful   stimuli   including:  light   touch,   a   breeze,   sound,     vibration,  bright  lights  and  more.   In   addition,   CRPS   is   characterized   by   motor   disturbances   such   as   weakness,   tremor   and   muscle   spasms   and   sympathetic  dysfunction,  such  as  changes  in  vascular  tone,  temperature  changes  and  increased  sweating.   Neurological  effects  of  CRPS,  including  long  term  cognitive  and  mood  changes  may  be  incorrectly  treated  as   existing  separately  from  the  condition,  however  new  research  will  hopefully  help  raise  awareness.    It  has   been  shown  that  neuropsychological  deficits  are  present  in  65%  of  CRPS  patients,  including  deficits  in  the   executive   functions,   for   example   planning,   organising,   self-­‐awareness,   self-­‐regulation   and   initiation   of     action,  word  recall,  lexical  memory  and  conscious  memory  of  events.   Sleep  is   massively   affected,   though   this   is   unsurprising   given   the   CNS   and   ANS   changes   and   of   course,     constant  severe  pain.   CRPS   is   currently   viewed   as   involving   interactions   between   the   immune   system,   the   ANS   and   the   Central   Nervous  System.     In   most   cases   an  upper   or   lower   limb   is   affected   but   spreading   can   and   does   occur   to     other  body  parts,  or  many  different  body  parts  at  the  same  time  (as  with  full  body  or  systemic  CRPS)  can  be   involved  including  internal  organs.   CRPS   may  be   understood   as   a   bio   psychosocial   disorder,   whereby   psychological,   behavioural   and     pathophysiological  factors  interact  in  a  highly  complex  manner.     Most  studies  of  CRPS  have  focused  on  the   peripheral   and   spinal   mechanisms   responsible   for   the   origin   and   development   of   the   syndrome.     However,   the  emerging  view  is  that  the  peripheral  (autonomic  and  somatosensory)  changes  in  CRPS  must  be  viewed   as  a  manifestation  of  changes  in  the  brain.   Complex   Regional   Pain   Syndrome   is   a   multifactorial   disorder   with   clinical   features   of  neurogenic   inflamma-­‐ tion,  nociceptive  sensitisation  (which  causes  extreme  sensitivity  or  Allodynia),  vasomotor  dysfunction,  and   maladaptive  neuroplasticity,  generated  by  an  aberrant  response  to  tissue  injury.       [[email protected]]  

  CRPS  is  ranked  as  the  highest  form  of  chronic  pain  that  exists  in  medical  science  today.   Reading  42  on  the  McGill  Pain  Scale  (RSD/CRPS  is  referred   to  as  Causalgia,  which  is  Latin  for  “burning  pain”).    CRPS  is   a   debilitating   disease   if   not   treated   promptly   and     properly.     The   onset   of   CRPS   usually   follows   a   trauma,   injury   or   surgery   and   increasing   evidence   suggests   that   psychological  trauma   can   cause   CRPS   or   increase   the  chance   of   its   development   after   an   injury   by   an     estimated  eight  times.   Without  going  into  a  full-­‐blown  description  of  the  disease   let  us  initially  concentrate  on  the  four  main  symptoms:   Constant   chronic   burning   pain   –   also   throbbing,   aching   stabbing,   sharp,   tingling,   and/or   crushing   in   the   affected   area  or  areas.    Allodynia  is  a  huge  problem  with  RSD/CRPS   (extreme   pain   response   from   innocuous   stimuli);   even   a   light   breeze   can   cause   pain,   let   alone   the   noise,   lights,   crowds   and   vibrations,   all   having   a   debilitating   and     life-­‐limiting  effect.    In  CRPS  normal  inputs  such  as  touch,   stroking   and   movement   are   misinterpreted   as   painful.   This  on-­‐going  “painful”  interpretation  is  a  big  part  of  the   problem.   Inflammation  –  is  not  always  present.  It  can  take  various   forms,   the   skin   may   appear   mottled,   become   easily   bruised,   have   a   shiny,   dry,   red,   and   tight   look   to   it.     An   increase  in  sweating  usually  occurs  as  well.   Spasms  in  blood  vessels  and  muscles  of  the  extremities  –   this   results   in   a   feeling   of   coldness   in   the   affected     extremity,   which   feels   like   ice   between   the   bones   or   fire   burning   the   affected   areas.     Because   of   an   inability   to   regulate   our   inner   thermostats,   touching   something   cool   can  be  excruciating  or  cause  freezing  or  burning  pains.   Insomnia/Emotional   Disturbance   –   CRPS   affects   the   limbic   system   of   the   brain.     This   causes   many     problems  that  might  not  initially  be  linked  to  a  disease  like  CRPS,  among  them  are  depression,  insomnia,   extreme   difficulty   concentrating,   and   short-­‐term   memory   problems.     Cognitive   difficulties   similar   to     fibro-­‐fog  are  prevalent,  simply  due  to  the  sensory  overload  of  constant  severe  pain.    

Early Treatment The  main  goal  of  treatment  for  CRPS  is  reversal  of  the  course,  amelioration  of  suffering,  return  to  work  if  at   all   possible,   avoiding   surgical   procedures   such   as   amputation,   and   improvement   in/some   quality   of   life.     The   key   to   success   is   early   diagnosis   and   early   assertive   treatment.     Devastatingly,   lack   of   proper     understanding  and  proper  diagnosis  leads  to  improper  treatment  with  poor  outcome.    There  is  a  desperate   need   for   future   research   in   the   treatment   of   CRPS.     Delay   in   diagnosis   is   a   factor   in   therapeutic   failure.       Early   diagnosis   (up   to   2   years)   is   essential   for   achieving   the   goal   of   successful   treatment   results.     Simple   monotherapy   with   only   nerve   block,   only   Gabapentin,   or   otherwise,   is   not   sufficient   for   management   of   Complex  Regional  Pain  Syndrome.   Treatment   should   be   multidisciplinary   and   simultaneous:   effective   analgesia,   proper   antidepressants   to   reduce  pain  and  insomnia;  physiotherapy,  nerve  blocks,  proper  diet,  when  indicated  channel  blockers,  and   anticonvulsant  therapy  should  be  applied  early  and  simultaneously.    Administration  of  minimal  treatments   is  apt  to  fail  leading  to  lifelong  disability  and  such  severe  pain  that  work  is  often  seldom  ever  returned  to.  

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CRPS Causes
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Trauma   Soft-­‐tissue  injuries   Fractures   Heart  disease  (caused  by  inadequate  blood  supply)   Spinal  cord  disorders   Cerebral  lesions   Infections   Surgery   Repetitive  motion  disorder   Recent   research   suggests   that   severe   emotional   trauma   prior   to   a   physical   trauma,   massively     increases  the  likelihood  of  CRPS  developing  

  It   is   not   known   why   these   factors   cause   CRPS   but   there   are   many   hypotheses   that   are   the   subject   of     research.     Severe   emotional   trauma   such   as   rape   or   abuse   has   been   the   suggested   to   increase   the   chances   of   CRPS   developing,   with   so   many   patients   being   trauma   survivors.     Another   interesting   link   made   by   a     doctor  at  Bath  Hospital  was  the  correlation  of  eating  disorders  in  the  patient  histories  of  those  who  have   developed  CRPS.   However,   just   as   each   human   is   unique,   each   case   is   unique.  CRPS   type   two   (causalgia)   is   defined   by     burning   pain,   allodynia   (innocuous   stimuli   causing  severe   pain/an   increase   in   symptoms),   and   onset   usually   occurs  after  nerve  injury  but  it  may  be  delayed.     The  burning  pain  is  constant  and  exacerbated  by:     • light   • touch   • vibration   • stress   • sounds   • temperature   • movement  of  the  limb  (though  remaining  still  is  also  painful,  it  can  be  a  strange  art  and  balance)   • emotional  disturbance   • someone  standing  to  close  or  being  very  animated   • barometric  changes     Abnormalities  in  skin  temperature  and  blood  flow  may  occur  as  well  as  sudomotor  dysfunction.    Dystrophic   changes  may  occur  in  the  skin,  hair  or  nails.    CRPS  vertigo  and  a  whole  host  of  ANS-­‐dysfunction  symptoms   may  be  experienced.   The  pain  of  CRPS  is  constant  and  characterized,  at  least  initially  by  burning.    Not  in  a  descriptive  sense  but   as  if  your  limb  or  limbs  are  actually  in  a  fire.    This  unrelenting  pain  is  enhanced  with  every  movement  or   stimulus.     Allodynia   is   involved   (innocuous   stimuli   causing   severe   pain),   making   socialising   even   more     complicated   and   painful.     Even   a   light   breeze   is   enough   to   make   the   pain   rocket   so   having   hectic   people   around  massively  increases  the  pain.      

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Inflammation Swelling   is   sometimes   localized,   but   often   relentless   and   progressive.     Swelling   intensifies   the   pain   and   promotes  stiffness,  which  can  be  the  beginning  of  atrophy  and  deformity.    Keeping  the  movement  going  is   crucial!     When   tissue   is   injured   or   inflamed,   excess   fluid   enters   the   tissues   from   damaged   blood   vessels   within   these   injured   tissues.       If   the   veins   cannot   remove   all   of   this   fluid,   the   part   swells   (oedema).       However  this  swelling  is  usually  only  temporary,  because  the  tissues  heal  and  the  blood  vessels  no  longer   leak   excessively.     Swelling   is   one   of   the   symptoms   of   CRPS.     Early   in   the   course   of   the   disease,   this     inflammatory   process   causes   oedema.     The   swelling   in   CRPS   may   exist   far   longer   than   it   would   take   normal   tissue  to  heal  because  CRPS:     • Prevents  healing   • Causes  constant  inflammation   • May  cause  dilation  of  the  arteries  which  will  cause  more  fluid  to  leak,  and  may  cause  the  veins  to   contract,  which  also  prevent  the  normal  removal  of  non-­‐protein  fluid  from  tissues.   • The  oedema  of  RSD  may  last  for  long  periods  of  time   • STIFFNESS,  like  swelling,  is  progressive  resulting  in  less  motion  of  the  joints,  which  again,  results  in   increased  swelling  and  pain.    This  in  turn,  can  produce  further  deformity  and  joint  changes.   • DISCOLOURATION  indicates   circulatory   changes   that   diminish   the   nutrition   of   the   tissues   of   the   skin,   ligaments,   bones   and   tendons.     The   result   is   thin,   shiny   skin,   pencil-­‐like   fingers   and   changes   in   ligaments.    This  further  contributes  to  stiffness  and  pain.    CRPS  in  the  upper  extremities  had  been   classified  in  the  following  five  ways,  based  on  the  location  and  intensity  of  symptoms.     Traditionally,   complex   regional   pain   syndrome   was   seen   as   a   three-­‐stage   disease;   however,   these   stages   are   increasingly   being   seen   as   theoretical   as   all   the   features   may   not   be   present   and   the   speed   of     progression   varies   hugely   between   patients.     Some   patients   never   actually   progress   to   stage   III,   while     others  get  to  stage  III  and  lose  some  of  the  symptoms  of  the  earlier  stages.   Early  recognition  of  the  disease,  correct  diagnosis,  and  proper  treatment,  are  all  essential  in  keeping  RSD   from   becoming   a   chronic,   life-­‐long   condition.     Treatment   must   begin   within   months   of   onset,   ideally   within   three  months.     Here  are  some  of  the  many  symptoms  of  CRPS:     • Skin  temperature,  skin  colour  changes   • Pain  caused  by  innocuous  stimuli,  for  instance  sound,  vibration,  light  touch,  even  someone  in  the   room  can  increase  pain.    Allodynia  is  pain  from  thing  that  you  would  never  expect  to  cause  pain,   while   hyperalgesia   is   an   exaggerated   pain   response,   so   far   more   pain   than   should   result   from   a   stimulus.   • Tremors,  shakes,  spasms  and  muscle  (dystonia)   • Temperature  changes  and  inability  to  regulate  temperature   • Changes  in  hair/nails/skin   • Sweating  changes,  sometimes  sweating  varies  from  one  side  of  the  body  to  the  other   • Fluid  build-­‐up  causing  swelling  (oedema)   • Lower  bone  density  as  they  become  more  porous  (osteoporosis)   • Avoiding   using   the   part   of   the   body   which   hurts,   which   then   causes   additional   problems   like   the   muscles  starting  to  waste  away  through  lack  of  use  (atrophy)   • Central  Nervous  System  (CNS)  dysfunction  and  hyperactivity.     The  CNS  is  made  up  of  the  brain  and  spinal  cord  which  use  the  information  from  the  wider  spread  ANS  to   control  and  co-­‐ordinate  what  we  do.    The  CNS  can  do  strange  things  when  it’s  dependent  on  a  faulty  ANS   for  it’s  information.     As  the  condition  develops  the  pain  becomes  continuous,  it  is  truly  relentless.    There   are  brief  periods  where  it  may  not  be  as  severe,  but  considering  that  the  pain  experienced  is  off  the  scale  of   previous  personal  experience  for  most  patients,  the  lesser  pain  moments  are  still  excruciating  by  ‘normal’   standards.    No  wonder  the  natural  response  is  to  stop  using  whichever  part  of  our  body  is  affected.     [[email protected]]  

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CRPS Frustration

Complex   Regional   Pain   Syndrome   is   frequently   dismissed   by   health   professionals   for   many   reasons     including:     • They  don’t  understand  the  diagnosis  and/or  they  are  not  familiar  with  the  disorder.   • They  understand  the  diagnosis  but  lack  experience  in  how  to  treat  it  properly.   • Many  think  that  the  client  is  pretending  to  be  ill  or  exaggerating  their  pain.   • CRPS  is  thought  to  be  hopeless  and  there  is  no  cure.   • CRPS  is  purely  psychological  and  is  not  a  medical  condition   • Many  people  who  work  within  the  health  care  system  dread  accepting  a  client  with  CRPS  because   they  know  that  effective  treatment  requires  an  on-­‐going,  almost  daily  assessment  of  the  condition   to  develop  the  proper  regimen.  It  is  far  too  time  consuming  for  most  clinics  to  adequately  care  for   the  patient.    Generally,  doctors  like  to  cure  not  manage  chronic  illness.   • Due  to  the  nature  of  CRPS,  the  condition  can  quickly  change  for  better  or  worse  for  reasons  that   are  not  fully  understood.    Therefore  it  is  necessary  to  schedule  evenly  spaced  treatment  sessions  in   order  to  benefit,  which  is  often  not  possible  for  many  patients  who  now  are  unable  to  work.   • The  health  care  provider  must  address  the  plan  of  care  very  carefully  once  the  diagnosis  is  made   and  must  thoroughly  customise  therapy  for  each  Complex  Regional  Pain  Syndrome  patient.     Many   patients   suffer   needlessly   through   a   lack   of   understanding   from   their   GP/doctor,   resulting   in     insufficient   pain   management   that   causes   additional   stress   on   an   already   over-­‐taxed   body.     All   individual   characteristics  (psychological,  social,  physiological)  must  be  taken  into  account  during  therapy.     Communication   between   the   family   members,   health   professionals,   and   the   patient   must   be   clear,     on-­‐going   and   well   established.     It   is   common   for   the   patient   to   have   failed   in   a   previous   program   if   a     positive,   creative,   caring   relationship   was   not   in   place.   If   either   the   patient   or   the   therapist   senses   a     communication   problem,   it   is   far   better   to   acknowledge   that   another   clinician   may   be   of   greater   benefit   to   the  patient’s  progress.    

How is Complex Regional Pain Syndrome treated? Everyone   with   CRPS   needs   good   medical   support   and   treatment.     While   this   is   not   always   possible,     especially  if  you  live  in  a  rural  or  remote  area,  princessinthetower.org  can  help  guide  you  in  things  that  help   improve   your   pain   and   function.     Because   pain   involves   the   whole   person,   to   get   the   best   outcomes     treatments  and  management  usually  require  a  combination  of  some  of  the  following  approaches:     • Pacing   • Relaxation  techniques;  yoga;  breathing;  Tai  Chi;  Chi  Kung  etc.   • Mindfulness  based  relaxation   • Gentle  movement  and  mobilisation  techniques   • Coping  and  Managing  your  pain   • Use  of  pain  medicines  and  medical  procedures   • Complimentary  medicine     The  primary  task  is  to  eliminate  or  treat  all  possible  causes.  Successful  treatment  of  CRPS  is  dependent  on:     • Early  diagnosis.  If  diagnosed  early,  the  prognosis  is  very  good.   • Begin  treatment  of  the  underlying  cause,  if  there  is  one.  If  not,  then  focus  on  the  treatment  of  the   CRPS  process.   • The  key  approach  is  to  provide  adequate  pain  relief  in  order  to  undertake  rehabilitation  with  the   primary  aim  of  restoring  function  as  early  as  possible.    Also  it  is  vital  to  control  pain  so  that  pain   pathways  in  the  brain  do  not  become  maladaptively  rewired,  making  recovery  even  more  difficult.     [[email protected]]  

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What Does CRPS/RSD Feel Like?

CRPS  pain  can  be  anywhere  in  the  body  where  there  are  nerves.  Here  Keith  Orsini  answers  the  question:   what  does  it  feel  like?     “Well,   imagine   your   hand   was   doused   in   gasoline,   lit   on   fire,   and   then   kept   that   way   24   hours   a   day,   7   days   a  week,  and  you  knew  it  was  never  going  to  be  put  out.    Now  imagine  it  both  hands,  arms,  legs,  feet;  well,   you  get  the  picture.    I  sometimes  sit  there  and  am  amazed  that  no  one  else  can  see  the  flames  shooting  off   of   my   body.     The   second   component   to   CRPS   is   Allodynia.     “Allodynia   is   an  extreme  sensitivity   to   touch,   sound,  and/or  vibration.    Imagine  that  same  hand  now  has  the  skin  all  burned  off  and  is  completely  raw.     Next,  rub  some  salt  on  top  of  it  and  then  rub  some  sandpaper  on  top  of  that!    THAT  is  allodynia!     Picture   getting  pretty  vivid?     Now,  because  of  the  allodynia,  any  normal  touch  will  cause  pain;  your  clothing,  the   gentle   touch   of   a   loved   one,   a   sheet,   rain,   shower,   razor,   hairbrush,   shoe,   someone   brushing   by   you   in   a   crowded  hallway,  etc.  “In  addition,  sounds,  especially  loud  or  deep  sounds  and  vibrations,  will  also  cause   pain;  thunder,  loud  music,  crowds,  singing,  yelling,  traffic,  kids  screaming,  loud  wind,  even  the  sound  in  a   typical  cinema.     This  is  what  allodynia  is  all  about.     Imagine  going  through  your  daily  life  where  everything   that   you   touch,   or   that   touches   you,   where   most   every   noise   around   you   from   a   passing   car   to   children   playing,   causes   you   pain.     In   addition   to   the   enormous   pain   you   are   already   experiencing   from   the   CRPS   itself.    Imagine  living  with  that  pain  and  allodynia  24  hours  a  day,  every  day.”  ~  KEITH  ORSINI  

Fibromyalgia and CRPS Although  many  CRPS  patients  are  later  diagnosed  with  Fibromyalgia,  the  two  are  frequently  confused  but   remain   vastly   different   in   terms   of   day-­‐to-­‐day   living   and   severity   of   symptoms.     Some   fibromyalgia   patients   are   completely   debilitated   but   even   they   can   have   moments   of   reduced   pain.     CRPS   is   constantly   at   a     severe   level   and   personally,   I   feel   the   difference   of   character   between   the   two   pains   also   confirms   the     differences  between  the  two  pain  conditions.    There  may  be  a  continuum,  with  dysautonomia  and  central   sensitization  being  present  in  both  but  there  are  clearly  distinct  symptoms  that  are  present  in  CRPS  that  are   absent  in  fibromyalgia.  

When it All Gets Too Much

The  suicide  rate  among  RSD/CRPS  sufferers  is  extremely  high  due  to  the  intensity  of  the  never-­‐ending  pain,   sleep   deprivation,   frustration,   social   isolation,   misunderstanding,   and   lack   of   support   from   medical     professionals,  family  and  friends.    If  you  are  a  patient  suffering  from  depression  and  contemplating  suicide,   please,  please  get  help  –  Suicide  Prevention  /  Depression  Support:     • Pain  Association  Scotland:  0800  783  6059   • Pain  Concern  UK:  01620  822  572   • Painline:  0845  603  1593   • Samaritans  (National  and  local):  08457  90  90  90       Feeling  suicidal  is  not  a  character  defect,  and  it  doesn’t  mean  that  you  are  crazy,  or  weak,  or  flawed.  It  only   means   that   you   have   more   pain   than   you   can   cope   with   right   now.       No   matter   how   you   feel   in   this     moment,  and  no  matter  how  impossible  it  may  seem,  things  can  and  do  improve.   Life  with  severe,  constant  pain  is  hard,  very  hard.    There  will  be  times  when  what  is  already  excruciating   flares   up   to   being   beyond   comprehension   in   terms   of   pain,   and   it   is   these   times   where   you   must   take   extra   special  care  of  yourself  and  mind.       Know  that  you’re  not  alone;  the  human  mind  can  sometimes  be  your  own  worst  enemy,  especially  when   bottling  up  how  you’re  feeling  both  physically  and  mentally.    Consider  joining  a  community  who  knows  how   you’re   feeling   and   speak   with   members   who   have   first-­‐hand   experience   with   depression   stemming   from   Complex  Regional  Pain  Syndrome.    

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