CRPS/RSD COMPLEX REGIONAL PAIN SYNDROME

Complex Regional Pain Syndrome (CRPS), or Reflex Sympathetic Dystrophy (RSD), as

it was previously known, 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 anesthetic.
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. (Birklein et al., 2000; Wasner et al., 2003).
In addition, CRPS is characterized by motor disturbances such as weakness, tremor
and muscle spasms (Veldman et al., 1993), and sympathetic dysfunction, such as
changes in vascular tone, temperature changes and increased sweating (Birklein
et al., 1998; Wasner et al., 2001).
Neurological effects of CRPS, including long term cognitive and mood
changes (Marinus, J. et al, (2011) in Clinical Features and Pathophysiology of
Complex Regional Pain Syndrome, The Lancet Neurology, Vol 10, Issue 7, pp637-648)
may be incorrectly treated as existing seaparetly 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, selfregulation and initiation of action, word recall lexical memory and conscious
memory of events declarative memory.
Sleep is massively affected, though this is unsurprising given the CNS and ANS
changes and of course, constant severe pain (Schwartzman, R.J., et al. (2009) in The
Natural History of Complex Regional Pain Syndrome, Clinical Journal of Pain, Vol. 25,
Issue 4, pp. 273-280).
Another paper by Schwartzman, R.J. (2012) Systemic complications of complex
regional pain syndrome explains full body involvement and is a good one to print out
if you are faced with what appears to be extensive spreading of our CRPS or many
additional symptoms that cannot be otherwise explained. Robert Schwartzman is one of
the leading experts in CRPS so this is definitely worth a read for both you and your
doctor.
CRPS is currently viewed as involving interactions between the immune system,
the ANS and the Central Nervous System (Rooij, A.M., (2010) in Genetic and
Epidemiological Aspects of Complex Regional Pain Syndrome, Doctoral Thesis, Leiden
University (ignore chapter 4 as its now been shown that their are no psychological
differences between control groups & CRPS groups.

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
(Stanton-Hicks et al., 1995) including
internal organs.
According to Bruehl and Chung
(2006), CRPS may be understood as
a biopsychosocial disorder, whereby
psychological, behavioral 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 (Jnig and
Baron,2002).
To prevent getting CRPS ALWAYS TAKE 1000mg/day VITAMIN C AFTER ANY
SPRAIN OR STRAIN research shows that it can help to prevent CRPS from
occurring.
Complex Regional Pain Syndrome is a multifactorial disorder with clinical features
of neurogenic inflammation, nociceptive sensitisation (which causes extreme sensitivity
or allodynia), vasomotor dysfunction, and maladaptive neuroplasticity, generated by an
aberrant response to tissue injury. 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.
See this post for ways manage and treat CRPS, while this is an open letter to those
without CRPS. 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 ongoing 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. It depends on
how long the CRPS has been present, and whether it is typically hot CRPS or cold
CRPS.
This is as well as body fatigue, skin rashes, occasional low-grade fever and sore
throats; swelling (edema), sores, dystonia, and tremors. The spasms can be confined to
one area or be rolling in nature, moving up and down the leg, arm, or back.
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.

CRPS involves a malfunction of the nervous system that causes pain (often diffuse,
intense and unrelenting) and related sensory abnormalities). Dysautonomia means
dysregulation of the autonomic nervous system (ANS). The ANS controls involuntary
bodily synergies between the sympathetic and parasympathetic nervous symptoms.
Necessary involuntary functions include things like heartbeat, breathing, digestion, and
body temperature regulation. Studies have also linked the nervous system to
the immune system, suggesting a possible correlation between ANS and autoimmune
disorders.
In dysautonomia, the ANS does not respond to stimuli appropriately, either the
parasympathetic or sympathetic nervous system can be hyporesponsive or
hyperresponsive, often heightened by physiologic and psychologic stress. In those with
mitochondrial dysautonomia, mitochondrial dysfunction is believed to cause the
dysautonomia.

Since mitochondria provides a source of energy for cells, fatigue related diseases are
common among mitochondrial myopathies. Nerve cells in the brain and muscles require
significant energy and are depleted with mitochondrial malfunction.
Abnormal regulation of body temperature in mitochondrial disease patients is
common, resulting in either a lower or higher baseline body temperature or a distinct
intolerance to heat or cold. There may also be abnormal blood flow and sweating in
the affected areas, problems with movement of the muscles and changes in the
structure of the tissues (trophic changes).
Complex Regional Pain Syndrome involves the skin, nerves, blood vessels, and bones.
The sympathetic nervous system reacts to a stimulus, for example, an injury, although it
could be as little as a spiders bite. Blood flow may be affected in reaction to a burn, cut,
or severe temperature changes. To stop you from using an injured limb, the limb swells.
Sometimes inexplicably an abnormal or prolonged sympathetic reflex begins in a limb
as reaction to a trauma.
The sympathetic nerves become overactive and can cause extensive symptoms that in
turn cause debilitating consequences. There can be many symptoms but the most
common one issevere, burning pain. Some of the other symptoms due to ANS
dysfunction include swelling, temperature change, skin colour change, diminished
motor function, and severe sweating. These symptoms usually happen in a limb but
can occur anywhere in the body, trunkel CRPS in the face or organs are some extreme
examples. Symptoms may vary with each individual who has Complex Regional Pain
Syndrome or CRPS/RSD.
Reflex Sympathetic Dystrophy/RSD is the former name for Complex Regional Pain
Syndrome (CRPS). The name of Reflex Sympathetic Dystrophy (RSD) was changed to
Complex Regional Pain Syndrome (CRPS) in 1993 by the International Association for
the Study of Pain.
It has been known by many names such as algodystrophy or Causalgia or RSD, but is
now most commonly known as CRPS. The are 2 forms of Complex Regional Pain
Syndrome. The only difference between type 1 and type 2 is type two is easier to
diagnose. CRPS type one is formerly known as RSD and CRPS type two was

causalgia. Complex Regional Pain Syndrome and Reflex Sympathetic Dystrophy are
used synonymously today.

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.
Read this post on: How to Manage and Treat Complex Regional Pain Syndrome for
CRPS Awareness Month

There is a desperate need for future research in the

treatment of CRPS
Delay in diagnosis is a factor in therapeutic failure. According to Poplawski, et al,
treatment, and its results, are hampered by delay in diagnosis. 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 CRPS.
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.

RSD/CRPS Causes

Trauma (physical trauma; there has also been evidence of psychological

trauma causing a surge of activity in the amygdala and sympathetic nervous
system, CRPS can occur in this instance when a secondary physical trauma
happens simultaneously or while this activity is occurring)

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-disfunction symptoms
may be experienced.

Pain
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 stimuls. 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.

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 (edema). 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 edema. 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 nonprotein fluid from tissues.

The edema 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.
The following excerpt is taken from the America RSD Hope website:
1) The CONSTANT PAIN can be described as a burning pain. It feels as if a red hot
poker were inserted into the affected area. it is also described as throbbing, aching
stabbing, sharp, tingling, and/or crushing in the effected area; this is not always the site
of the trauma. The effected area is usually hot or cold to the touch. The pain will be
more severe than anticipated for the type of injury sustained. This is a hallmark of the
disease. Allodynia is typically present as well. Allodynia is an extreme sensitivity to
touch, sound, vibration, barometric pressure changes, loud noises, wind/breeze,
temperature, clothing, and even the gentle touch of a loved one. This makes it
increasingly difficult on the spouses, children, and other family members; as their softest
touch can now cause pain instead of comfort. If the patient has not been properly
diagnosed yet and these sensations not properly explained, these symptoms can cause
extreme duress and confusion to all involved. For more on What Does CRPS Feel
Like click here.
2) INFLAMMATION is not always present in the same form but it can take various
forms; the skin may appear mottled, become easily bruised, bleeding in the skin, small
red dots, have a shiny, dry, red, and tight look to it. In addition; increase in sweating
usually occurs as well as swelling in and around the joints (shoulders, knees, wrists). In
some patients a lack of sweating may occur, and some even go back and forth between
the two.
3) The SPASMS result in a feeling of coldness in the effected extremity as well as body
fatigue, skin rashes, low-grade fever, swelling (edema), sores, dystonia, and tremors.
The spasms can be confined to one area or be rolling in nature; moving up and down
the leg, arm, or back. They can involve not only muscles but also blood vessels.

4) The fourth part of this square is INSOMNIA and EMOTIONAL DISTURBANCE.

CRPS affects the limbic system of the brain. Doctor Hooshang Hooshmand described it
well: The fact that the sympathetic sensory nerve fibers carrying the sympathetic pain
and impulse up to the brain terminate in the part of the brain called limbic system. This
limbic (marginal) system which is positioned between the old brain (brainstem) and the
new brain (cerebral hemispheres) is mainly located over the temporal and frontal lobes
of the brain. This causes many problems that might not initially be linked to a disease
like CRPS; chief among them are depression, insomnia and short-term memory
problems but also includes agitation, irritability, and possibly even poor judgement.
CRPS can cause Depression, NOT the other way around. Read more here: RSD Hope
What is CRPS?

Here are some of the many symptoms of CRPS/RSD:

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 contractions that can cause unusual
movements and postures (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 (edema)

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 its dependent on a faulty ANS for its 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.
Read more at: What is CRPS? | Elle and the Auto Gnome.

Complex regional pain syndrome in adults

Integrative conceptual model of CRPS. In the affected limb after trauma, enhanced antidromic secretion of neuropeptides from sensory nerve endings [77], enhanced release
of immune mediators from various cells [22] and surface binding autoantibodies [54]
may contribute both to change regional sensory nerve function, and elicit sensory
axonal degeneration; resulting functional and structural changes may then elicit further
changes creating a vicious cycle [70]. Some of these changes may be enhanced by
tissue ischaemia ([59], data not shown). The long-lasting response of patients with long-

standing CRPS to thelikely centrally actingNMDA-receptor antagonist ketamine [47,

48] also suggests that, at least in chronic cases these regional factors do not sufficiently
activate nociceptors (otherwise pain intensity would return as the ketamine plasma level
declines); these factor may rather create a low-level activation of sensory nerves
sustaining central sensitization in the dorsal horn (see main text). Certain methods of
brain training, and spinal cord stimulator treatment can, through yet unknown
mechanisms alter regional factors in the affected limb, as evidenced by their reported
efficacy to reduce limb swelling [13, 66, 92]. The model does not account for the
presumed role of sympathetic dysfunction in some patients.

CRPS is a sympathetically mediated disorder

Sweating and colour/temperature differences between CRPS-affected and unaffected
limbs are in part mediated by a complex sympathetic dysregulation. There is a low,
rather than high, centrally mediated sympathetic outflow to cutaneous vasoconstrictors
in the CRPS-affected extremity, which likely contributes to produce red and warm
extremities [35]; other vasomotor signs such as cold temperature and bluish
dyscolouration may be caused by reactive adrenoceptor up-regulation and/or
supersensitivity, rather than by a dysregulation of the sympathetic outflow [36, 37].
Vaso- and sudomotor signs often diminish with time. The permanent cold temperature
in some cases of late CRPS may be due to endothelial rather than sympathetic
dysfunction [38]. Evans [39] had introduced the, now superseded term RSD to indicate
that regional autonomic dysregulation actually causes the patients pain. HanningtonKiff [40] later suggested that agents that deplete the limb autonomic nerve endings of
noradrenaline, such as regional guanethidine should, therefore, be effective.
Unfortunately, all four RCTs conducted to assess this treatment have been negative
[19]. Given the experience shared by many clinicians that this method, termed i.v.
regional sympathetic block (IVRSB), actually does reduce pain in some patients, one
wonders whether it is perhaps the application of tourniquet that conveys that effect.
Indeed, IVRSB with saline may be more effective than IVRSB with guanethidine [41].
Local anaesthetic application to the sympathetic ganglia (i.e. stellate or lumbar
sympathetic blocks) can relieve pain for the short term in selected patients [42], but
repeat application does not prolong that effect [43]. Sympathetically maintained pain
(SMP), that is pain that can be reduced by sympathetic blockade, although common in

early CRPS, is rare in long-standing CRPS [44]. While there clearly is autonomic
dysregulation [45], both the discussed rarity of SMP in those clinically particularly
problematic long-standing cases, and the emergence of novel aetiological concepts
have contributed to prompting CRPS experts to de-emphasize the importance of the
concept of sympathetic dysfunction for advancing patient treatment.

Central sensitization is the driving factor for CRPS

Central sensitization is the molecular process that corresponds to the clinical
observation that after a period of intense or repeated noxious stimulation (a noxious
stimulus actually or potentially causes tissue damage), innocuous (non-noxious) stimuli
become painful and remain painful (for a while at least) even if the initial noxious
stimulation has subsided. This mechanism is important in most chronic pain [46]. Since
N-methyl D-aspartate (NMDA) receptors play a critical role in central sensitization, the
recent observation in two RCTs that low-dose i.v. ketamine (an NMDA antagonist) can
dramatically reduce CRPS pain, indicates an important role for such central
sensitization [47, 48]. There is currently no RCT evidence for high-dose ketamine coma
under intensive care conditions, which has sometimes been discussed in the media
[49]. In the two published low-dose RCTs, ketamine strongly reduced average pain
intensity for several weeks independently of the CRPS disease duration, but without
improving function. It is uncertain how these research findings will translate into clinical
practice. Side effects from repeated ketamine infusions are poorly understood, and
some experts have expressed concern about potential neurotoxicity [50]. Current
protocols for ketamine treatment are expensive and cumbersome. In the published
protocols, either a 5day hospital inpatient stay, or 10 consecutive working-day
outpatient treatments are required to achieve pain relief lasting several weeks.
Recently, a small pilot trial suggested efficacy of i.v. magnesium which, similar to
ketamine, may work to reduce central sensitization [51].
Budapest diagnostic criteria (AD must apply). Note that it is possible to distinguish
between CRPS-1 (without damage to major nerves) and CRPS-2 [associated with (yet
not causing) damage to a major nerve, a very rare presentation], but there is currently
no RCT-derived evidence that this distinction has any consequence for treatment. a The
reflected understanding of allodynia as painful sensation to a number of normally nonpainful stimuli is under review by the IASP taxonomy group. Some experts suggest that

the term allodynia should be reserved only for brush-stroke evoked pain (dynamic
mechanical allodynia). bHyperalgesia is exaggerated pain to a painful stimulus such as
a pinprick. cFor example, raised systemic inflammatory markers are not associated with
CRPS, even in the initial inflammatory phase; such a finding of raised markers would
lead to a search for an alternative or concomitant cause. Abnormal nerve conduction
studies do not exclude CRPS, but the primary cause of the observed abnormality must
be clarified: CRPS, by definition is always secondary, its presence cannot explain major
nerve damage. Figure adapted from Ref. [4].

via Complex regional pain syndrome in adults.

What Body Parts are Involved?

CRPS is a multi-symptom condition typically affecting one, two, or sometimes even all
four extremities. It can also be in the face, shoulders, back, eyes, and other areas of the
body as well. CRPS is an involvement of nerves, skin, muscles, blood vessels (causing
constriction, spasms, and pain) as well as bones. This is from the Orthopod website:
Sympathetic nerves are responsible for conducting sensation signals to the spinal cord
from the body. They also regulate blood vessels and sweat glands. Sympathetic ganglia
are collections of these nerves near the spinal cord. They contain approximately
20,000-30,000 nerve cell bodies. CRPS is felt to occur as the result of stimulation of
sensory nerve fibers. Those regions of the body rich in nerve endings such as the
fingers, hands, wrist, and ankles are most commonly affected.
When a nerve is excited, its endings release chemicals. These chemicals cause
vasodilation (opening of the blood vessels). This allows fluid to leak from the blood
vessel into the surrounding tissue. The result is inflammation or swelling leading to more
stimulation of the sensory nerve fibers. This lowers the pain threshold. This entire
process is called neurogenic inflammation.
This explains the swelling, redness, and warmth of the skin in the involved area initially.
It also explains the increased sensitivity to pain. As the symptoms go untreated, the
affected area can become cool, have hair loss, and have brittle or cracked nails. Muscle
atrophy or shrinkage, loss of bone density (calcium), contracture, swelling, and limited
range of motion in joints can also occur in the affected limb. These are in part caused by
decreased blood supply to the affected tissues as the condition progresses.
(Source: A Patients Guide to Pain Management: Complex Regional Pain Syndrome)

Does RSD/CRPS Spread?

It may spread from one part of the body to another regardless of where the original
injury occurred. RSD/CRPS can spread in up to 70% of the cases. However, in a small
number of cases (8% or less) it can become Systemic or body-wide. CRPS usually
spreads up/down the same limb, or to the opposite limb but in an increasing number of
cases it spreads to other areas of the body.

The pain of CRPS is continuous and it is widely recognised that it can be

heightened by emotional or physical stress. Limbic system involvement suggests a
propensity for trouble with sleeping, mood, appetite and sexual desire; in a study of 824
patients with CRPS, 92% reported insomnia, 78% irritability, agitation, anxiety, 73%
depression and 48% had poor memory and felt they lacked concentration.
Patients are frequently classified into two groups based upon temperature, whether they
are predominately warm or hot CRPS, or cold CRPS. The vast majority,
approximately 70% of patients, have the hot type, which is said to be an acute form of
CRPS. Cold CRPS is said to be indicative of a more chronic and long-term CRPS,
affecting 30% of long-term CRPS patients.
With poorer McGill Pain Questionnaire (MPQ) scores, increased central nervous system
involvement and a higher prevalence of dystonia, this new stage (though the idea of
stages of RSD/CRPS has been abandoned by pain specialists) of the CRPS can be
managed but is obviously.
If you have developed Cold CRPS, trying to maintain mobility and keep movement in
the area is vital. Microcirculation is compromised, though little is known as with other
CRPS cases how to treat it. Obviously, heat therapy comes into its own here.
Prognosis is not favourable for cold CRPS patients, longitudinal studies suggest these
patients have poorer clinical pain outcomes and show persistent signs of central
sensitisation correlating with disease progression.
Previously it was considered that CRPS had three stages; it is now believed that
patients with CRPS do not progress through these stages sequentially. These stages
may not be time-constrained, and could possibly be event-related, such as ground-level
falls or re-injuries in previous areas. It is important to remember that
oftenthe sympathetic nervous system is involved with CRPS, and the autonomic
nervous system can go haywire and cause a wide variety of strange symptoms.

CRPS Frustration
Complex Regional Pain Syndrome is frequently dismissed by health professionals for
many reasons including:

They dont 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 (have hope!).

CRPS is purely psychological and that it is not

a medical condition, i.e. Its all in your head,

which is clearly a myth.

Many people who work within the health care

system dread accepting a client with CRPS

because they know that effective treatment
requires an ongoing, 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 RSD/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 . 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 patients 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, this website 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 (also see Pain Management)

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 (see Pain-Relief and Coping for Severe Pain)

The primary task is to eliminate or treat all possible causes. If there is no known cause,
or if with the removal of the cause, the symptoms do not satisfactorily disappear, then
there are only the symptoms of RSD/CRPS to be treated. Successful treatment of
RSD/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 RSD/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,
with the recent research in neuroscience, it is vital to control pain so that pain
pathways in the brain do not become maladaptively rewired, making recovery
even more difficult.

See How to Manage and Treat Complex Regional Pain Syndrome.

What Does CRPS/RSD Feel Like?

CRPS pain can be anywhere in the body where there are nerves. Most commonly in the
four extremities but some people have it in other areas such as eyes, ears, back, face,
etc. Here Keith Orsini answers the question: what does it feel like?
Well, if you had it in your hand, 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 what is called 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; a school bell, thunder, loud music, crowds,
singing, yelling, sirens, traffic, kids screaming, loud wind, even the sound in a typical
movie theatre. 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 or plane 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, for months, years, and longer. There
are many other symptoms which you can read about in our CRPS SYMPTOMS section
but these are the two main ones that most patients talk about the most. ~ Keith Orsini
via What Does CRPS Feel Like? American RSDHope.

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.

What You Can Do For Your CRPS:

Pain education
To manage pain and gain more control over your life
and symptoms in spite of CRPS, you must understand
how pain behaves. Visit the Pain Management page for
more info and watch a great video with the amazing
Prof, Lorimer Moseley, who banishes the jargon and
offers a description of the pain process that even the
most unscientific of pain princesses can understand.

How to Manage and Treat Complex Regional

Pain Syndrome
Mobilisation & massage techniques
For pain relief, to reduce stiffness, increase circulation, ease movement and gain a
good sense of your body; all important in the recovery process but also if you need to
spend a long time in bed or resting due to high pain levels. see Pain-Relief and Coping
for Severe Pain.

Specific exercises
To mobilise tight & stiff body regions, to develop normal control of movement; gradually
progressing from just a couple of repetitions to ten (see a physiotherapist for guidance
on how to strengthen disused muscles).

General exercise
To progressively build up your tolerance and confidence for daily activity and your
chosen exercises; always keep within your limitations, increasing your timed activity
very gradually. Read this blog post on Therapeutic Yoga with a restorative yoga
sequence, which can be very healing and gentle enough to not cause a flare-up of
symptoms; swimming/aqua physio is immensely helpful with RSD/CRPS.

Graded exposure & pacing

There are often particular activities that are challenging, painful and sometimes avoided
for fear of causing damage or harm. With new knowledge of pain and confidence to
move you can gradually re-engage with some of these activities. Pacing means that you
set a baseline and work towards your goals, see the Pain Management page for more
information.

Brain-Focused Strategies
Modern neuroscience has delivered us new ways of approaching pain though our
understanding of the brain when we are in pain, in particular chronic or persisting pain.
We can target the adaptations and changes that have been found via particular types of
sensory and motor training. For example, the graded motor imagery program and tactile
discrimination training.

Mindfulness & focused attention training

To gain control over your attention and emotional regulation; there has been a spotlight
placed upon these techniques in recent years due to their effectiveness in stress and
pain. We teach and practice mindfulness and other cognitive methods as a way of
reducing the emotional aspects of pain, to directly tackle stress and to optimise
performance. Click here for an example of one of the mindfulness techniques.

Imagery & visualisation

Motor imagery is used as part of the graded motor imagery programme and as a stand
alone brain focused training. When we think about movement, the same areas of the
brain are active as when we actually move. Using this physiology within the cortical
network allows us to re-train normal movement (how the brain plans and then executes
precise and well controlled actions) at the early stages of rehabilitation. Visualisation is
a way of changing the body physiology in a positive manner thereby benefiting the
physical self, mood and creating a positive context for rehabilitation.

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:

UK: Samaritans (National and local): 08457 90 90 90 or jo@samaritans.org

UK: Painline: 0845 603 1593

US: Hopeline (Suicide Prevention): 1-800-SUICIDE (1-800-784-2433)

US: Suicide Hotline: 1-800-273-Talk (1-800-8255)

US: Directory of Local Helplines / Centers

Feeling suicidal is not a character defect, and it doesnt mean that you are crazy, or
weak, or flawed. It only means that you have more pain than you can cope with right
now. Please read this fantastic guide before you do anything that will leave everyone
wondering if there was something that they could do. 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 (I know
Im often astonished at just how limitless the variety and intensity of pain can be), and it
is these times where you must take extra special care of yourself and mind.
Read Techniques to Help Depression for help with depression. More will be added
regularly.
Know that youre not alone; the human mind can sometimes be your own worst enemy,
especially when bottling up how youre feeling both physically and mentally. Consider
joining a community who knows how youre feeling and speak with members who have
first-hand experience with depression stemming from RSD/CRPS.