CRPS/RSD COMPLEX REGIONAL PAIN SYNDROMEComplex Regional Pain Syndrome (CRPS), or Reflex Sympathetic Dystrophy (RSD), asit was previously known, is an excruciating chronic and complex disorder of theautonomic nervous system (dysautonomia), leading to constant pain that is recorded asbeing as severe as finger amputation without anesthetic.It is devastating for patients as is oftendiagnosed too late for full remission,though it is vital to never give uphope, people can and do go intoremissions but sadly [at the moment] itis only a small percentage. However,with more research being done into thiscomplex condition, our knowledge ofCRPS is evolving and hopefully, wetoo as patients may benefit from thatresearch.Currently, CRPS is considered to be acondition that includes interactions between the immune system, the ANS and theCentral 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 bothhow we appear (often looking healthy) and how at odds they are to normal healthyhuman behaviour. Pain being caused by sound is one example.Stating that someone needs to step back, because the allodynic pain of themstanding too close is making your nerves go crazy, or asking someone to speakmore quietly or stop rustling a plastic bag all sound very strange yet these thingscan cause our already excruciating pain to crescendo and magnifies our symptomsand discomfort.CRPS is a severely disabling condition characterised by burning pain, increasedsensitivity to all stimuli, and sensations of pain in response to normally non-painful stimuli including: light touch, a breeze, sound, vibration, bright lights andmore. (Birklein et al., 2000; Wasner et al., 2003).In addition, CRPS is characterized by motor disturbances such as weakness, tremorand muscle spasms (Veldman et al., 1993), and sympathetic dysfunction, such aschanges in vascular tone, temperature changes and increased sweating (Birkleinet al., 1998; Wasner et al., 2001).Neurological effects of CRPS, including long term cognitive and moodchanges (Marinus, J. et al, (2011) in Clinical Features and Pathophysiology ofComplex Regional Pain Syndrome, The Lancet Neurology, Vol 10, Issue 7, pp637-648)may be incorrectly treated as existing seaparetly from the condition, howevernew research will hopefully help raise awareness. It has been shown thatneuropsychological deficits are present in 65% of CRPS patients, including deficits inthe executive functions, for example planning, organising, self-awareness, self-regulation and initiation of action, word recall lexical memory and consciousmemory of events declarative memory.Sleep is massively affected, though this is unsurprising given the CNS and ANSchanges and of course, constant severe pain (Schwartzman, R.J., et al. (2009) in TheNatural 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 complexregional pain syndrome explains full body involvement and is a good one to print outif you are faced with what appears to be extensive spreading of our CRPS or manyadditional symptoms that cannot be otherwise explained. Robert Schwartzman is one ofthe leading experts in CRPS so this is definitely worth a read for both you and yourdoctor.CRPS is currently viewed as involving interactions between the immune system,the ANS and the Central Nervous System (Rooij, A.M., (2010) in Genetic andEpidemiological Aspects of Complex Regional Pain Syndrome, Doctoral Thesis, LeidenUniversity (ignore chapter 4 as its now been shown that their are no psychologicaldifferences between control groups & CRPS groups.In most cases an upper or lower limbis affected but spreading can anddoes occur to other body parts, ormany different body parts at thesame time (as with full body orsystemic CRPS) can be involved(Stanton-Hicks et al., 1995) includinginternal organs.According to Bruehl and Chung(2006), CRPS may be understood asa biopsychosocial disorder, wherebypsychological, behavioral andpathophysiological factors interact in ahighly complex manner. Most studiesof CRPS have focused on theperipheral and spinal mechanismsresponsible for the origin anddevelopment of the syndrome.However, the emerging view is thatthe peripheral (autonomic andsomatosensory) changes in CRPSmust be viewed as a manifestation ofchanges in the brain (Jnig andBaron,2002).To prevent getting CRPS ALWAYS TAKE 1000mg/day VITAMIN C AFTER ANYSPRAIN OR STRAIN research shows that it can help to prevent CRPS fromoccurring.Complex Regional Pain Syndrome is a multifactorial disorder with clinical featuresof neurogenic inflammation, nociceptive sensitisation (which causes extreme sensitivityor allodynia), vasomotor dysfunction, and maladaptive neuroplasticity, generated by anaberrant response to tissue injury. CRPS is ranked as the highest form of chronic painthat exists in medical science todayReading 42 on the McGill Pain Scale (RSD/CRPS is referred to as Causalgia, which isLatin for burning pain). CRPS is a debilitating disease if not treated promptly andproperly. The onset of CRPS usually follows a trauma, injury or surgery and increasingevidence suggests that psychological trauma can cause CRPS or increase the chanceof 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 thosewithout CRPS. Without going into a full-blown description of the disease let us initiallyconcentrate 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 withRSD/CRPS (extreme pain response from innocuous stimuli); even a light breeze cancause pain, let alone the noise, lights, crowds and vibrations, all having a debilitatingand life-limiting effect. In CRPS normal inputs such as touch, stroking and movementare misinterpreted as painful. This ongoing painful interpretation is a big part of theproblem.Inflammation is not always present. It can take various forms, the skin may appearmottled, become easily bruised, have a shiny, dry, red, and tight look to it. An increasein sweating usually occurs as well.Spasms in blood vessels and muscles of the extremities this results in a feeling ofcoldness in the affected extremity, which feels like ice between the bones or fire burningthe affected areas. Because of an inability to regulate our inner thermostats, touchingsomething cool can be excruciating or cause freezing or burning pains. It depends onhow long the CRPS has been present, and whether it is typically hot CRPS or coldCRPS.This is as well as body fatigue, skin rashes, occasional low-grade fever and sorethroats; swelling (edema), sores, dystonia, and tremors. The spasms can be confined toone 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. Thiscauses many problems that might not initially be linked to a disease like CRPS, amongthem are depression, insomnia, extreme difficulty concentrating, and short-term memoryproblems. Cognitive difficulties similar to fibro-fog are prevalent, simply due to thesensory 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 meansdysregulation of the autonomic nervous system (ANS). The ANS controls involuntarybodily synergies between the sympathetic and parasympathetic nervous symptoms.Necessary involuntary functions include things like heartbeat, breathing, digestion, andbody temperature regulation. Studies have also linked the nervous system tothe immune system, suggesting a possible correlation between ANS and autoimmunedisorders.In dysautonomia, the ANS does not respond to stimuli appropriately, either theparasympathetic or sympathetic nervous system can be hyporesponsive orhyperresponsive, often heightened by physiologic and psychologic stress. In those withmitochondrial dysautonomia, mitochondrial dysfunction is believed to cause thedysautonomia.Since mitochondria provides a source of energy for cells, fatigue related diseases arecommon among mitochondrial myopathies. Nerve cells in the brain and muscles requiresignificant energy and are depleted with mitochondrial malfunction.Abnormal regulation of body temperature in mitochondrial disease patients iscommon, resulting in either a lower or higher baseline body temperature or a distinctintolerance to heat or cold. There may also be abnormal blood flow and sweating inthe affected areas, problems with movement of the muscles and changes in thestructure 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 itcould 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 limbas reaction to a trauma.The sympathetic nerves become overactive and can cause extensive symptoms that inturn cause debilitating consequences. There can be many symptoms but the mostcommon one issevere, burning pain. Some of the other symptoms due to ANSdysfunction include swelling, temperature change, skin colour change, diminishedmotor function, and severe sweating. These symptoms usually happen in a limb butcan occur anywhere in the body, trunkel CRPS in the face or organs are some extremeexamples. Symptoms may vary with each individual who has Complex Regional PainSyndrome or CRPS/RSD.Reflex Sympathetic Dystrophy/RSD is the former name for Complex Regional PainSyndrome (CRPS). The name of Reflex Sympathetic Dystrophy (RSD) was changed toComplex Regional Pain Syndrome (CRPS) in 1993 by the International Association forthe Study of Pain.It has been known by many names such as algodystrophy or Causalgia or RSD, but isnow most commonly known as CRPS. The are 2 forms of Complex Regional PainSyndrome. The only difference between type 1 and type 2 is type two is easier todiagnose. CRPS type one is formerly known as RSD and CRPS type two wascausalgia. Complex Regional Pain Syndrome and Reflex Sympathetic Dystrophy areused synonymously today.Early TreatmentThe 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, andimprovement in/some quality of life. The key to success is early diagnosis and earlyassertive treatment. Devastatingly, lack of proper understanding and proper diagnosisleads to improper treatment with poor outcome.Read this post on: How to Manage and Treat Complex Regional Pain Syndrome forCRPS Awareness MonthThere is a desperate need for future research in thetreatment of CRPSDelay 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 2years) is essential for achieving the goal of successful treatment results. Simplemonotherapy with only nerve block, only Gabapentin, or otherwise, is not sufficient formanagement of CRPS.Treatment should be multidisciplinary and simultaneous: effective analgesia, properantidepressants to reduce pain and insomnia; physiotherapy, nerve blocks, properdiet, when indicated channel blockers, and anticonvulsant therapy should be appliedearly and simultaneously. Administration of minimal treatments is apt to fail leading tolifelong 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 psychologicaltrauma causing a surge of activity in the amygdala and sympathetic nervoussystem, CRPS can occur in this instance when a secondary physical traumahappens 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 physicaltrauma, massively increases the likelihood of CRPS developingIt is not known why these factors cause CRPS but there are many hypotheses that arethe subject of research. Severe emotional trauma such as rape or abuse has been thesuggested to increase the chances of CRPS developing, with so many patients beingtrauma survivors. Another interesting link made by a doctor at Bath Hospital wasthe correlation of eating disorders in the patient histories of those who have developedCRPS.However, just as each human is unique, each case is unique. CRPS type two(causalgia) is defined by burning pain, allodynia (innocuous stimuli causing severepain/an increase in symptoms), and onset usually occurs after nerve injury but it may bedelayed.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 strangeart and balance) emotional disturbance someone standing to close or being very animated barometric changesAbnormalities in skin temperature and blood flow mayoccur as well as sudomotor dysfunction. Dystrophicchanges may occur in the skin, hair or nails. CRPSvertigo and a whole host of ANS-disfunction symptomsmay be experienced.PainThe pain of CRPS is constant and characterized, atleast initially by burning. Not in a descriptive sense butas if your limb or limbs are actually in a fire. This unrelenting pain is enhanced withevery movement or stimuls. Allodynia is involved (innocuous stimuli causing severepain), making socialising even more complicated and painful. Even a light breeze isenough to make the pain rocket so having hectic people around massively increasesthe pain.InflammationSwelling is sometimes localized, but often relentless and progressive. Swellingintensifies the pain and promotes stiffness, which can be the beginning of atrophy anddeformity. Keeping the movement going is crucial! When tissue is injured or inflamed,excess fluid enters the tissues from damaged blood vessels within these injuredtissues. If the veins cannot remove all of this fluid, the part swells (edema). Howeverthis swelling is usually only temporary, because the tissues heal and the blood vesselsno longer leak excessively. Swelling is one of the symptoms of CRPS. Early in thecourse of the disease, this inflammatory process causes edema. The swelling in CRPSmay 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 maycause the veins to contract, which also prevent the normal removal of non-protein 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 producefurther deformity and joint changes. DISCOLOURATION indicates circulatory changes that diminish the nutrition ofthe tissues of the skin, ligaments, bones and tendons. The result is thin, shinyskin, pencil-like fingers and changes in ligaments. This further contributes tostiffness and pain. CRPS in the upper extremities had been classified in thefollowing 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 featuresmay not be present and the speed of progression varies hugely between patients. Somepatients never actually progress to stage III, while others get to stage III and lose someof the symptoms of the earlier stages.Early recognition of the disease, correct diagnosis, and proper treatment, are allessential in keeping RSD from becoming a chronic, life-long condition. Treatment mustbegin 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 hotpoker were inserted into the affected area. it is also described as throbbing, achingstabbing, sharp, tingling, and/or crushing in the effected area; this is not always the siteof the trauma. The effected area is usually hot or cold to the touch. The pain will bemore severe than anticipated for the type of injury sustained. This is a hallmark of thedisease. Allodynia is typically present as well. Allodynia is an extreme sensitivity totouch, sound, vibration, barometric pressure changes, loud noises, wind/breeze,temperature, clothing, and even the gentle touch of a loved one. This makes itincreasingly difficult on the spouses, children, and other family members; as their softesttouch can now cause pain instead of comfort. If the patient has not been properlydiagnosed yet and these sensations not properly explained, these symptoms can causeextreme duress and confusion to all involved. For more on What Does CRPS FeelLike click here.2) INFLAMMATION is not always present in the same form but it can take variousforms; the skin may appear mottled, become easily bruised, bleeding in the skin, smallred dots, have a shiny, dry, red, and tight look to it. In addition; increase in sweatingusually occurs as well as swelling in and around the joints (shoulders, knees, wrists). Insome patients a lack of sweating may occur, and some even go back and forth betweenthe two.3) The SPASMS result in a feeling of coldness in the effected extremity as well as bodyfatigue, 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 downthe 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 itwell: The fact that the sympathetic sensory nerve fibers carrying the sympathetic painand impulse up to the brain terminate in the part of the brain called limbic system. Thislimbic (marginal) system which is positioned between the old brain (brainstem) and thenew brain (cerebral hemispheres) is mainly located over the temporal and frontal lobesof the brain. This causes many problems that might not initially be linked to a diseaselike CRPS; chief among them are depression, insomnia and short-term memoryproblems 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, evensomeone in the room can increase pain. Allodynia is pain from thing that youwould never expect to cause pain, while hyperalgesia is an exaggerated painresponse, so far more pain than should result from a stimulus. Tremors, shakes, spasms and muscle contractions that can cause unusualmovements 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 theother 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 additionalproblems 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 thewider spread ANS to control and co-ordinate what we do. The CNS can do strangethings when its dependent on a faulty ANS for its information. As the conditiondevelops the pain becomes continuous, it is truly relentless. There are brief periodswhere it may not be as severe, but considering that the pain experienced is off the scaleof previous personal experience for most patients, the lesser pain moments are stillexcruciating by normal standards. No wonder the natural response is to stop usingwhichever part of our body is affected.Read more at: What is CRPS? | Elle and the Auto Gnome.Complex regional pain syndrome in adultsIntegrative conceptual model of CRPS. In the affected limb after trauma, enhanced anti-dromic secretion of neuropeptides from sensory nerve endings [77], enhanced releaseof immune mediators from various cells [22] and surface binding autoantibodies [54]may contribute both to change regional sensory nerve function, and elicit sensoryaxonal degeneration; resulting functional and structural changes may then elicit furtherchanges creating a vicious cycle [70]. Some of these changes may be enhanced bytissue 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 sufficientlyactivate nociceptors (otherwise pain intensity would return as the ketamine plasma leveldeclines); these factor may rather create a low-level activation of sensory nervessustaining central sensitization in the dorsal horn (see main text). Certain methods ofbrain training, and spinal cord stimulator treatment can, through yet unknownmechanisms alter regional factors in the affected limb, as evidenced by their reportedefficacy to reduce limb swelling [13, 66, 92]. The model does not account for thepresumed role of sympathetic dysfunction in some patients.CRPS is a sympathetically mediated disorderSweating and colour/temperature differences between CRPS-affected and unaffectedlimbs are in part mediated by a complex sympathetic dysregulation. There is a low,rather than high, centrally mediated sympathetic outflow to cutaneous vasoconstrictorsin the CRPS-affected extremity, which likely contributes to produce red and warmextremities [35]; other vasomotor signs such as cold temperature and bluishdyscolouration may be caused by reactive adrenoceptor up-regulation and/orsupersensitivity, rather than by a dysregulation of the sympathetic outflow [36, 37].Vaso- and sudomotor signs often diminish with time. The permanent cold temperaturein some cases of late CRPS may be due to endothelial rather than sympatheticdysfunction [38]. Evans [39] had introduced the, now superseded term RSD to indicatethat regional autonomic dysregulation actually causes the patients pain. Hannington-Kiff [40] later suggested that agents that deplete the limb autonomic nerve endings ofnoradrenaline, 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, onewonders 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 lumbarsympathetic blocks) can relieve pain for the short term in selected patients [42], butrepeat application does not prolong that effect [43]. Sympathetically maintained pain(SMP), that is pain that can be reduced by sympathetic blockade, although common inearly CRPS, is rare in long-standing CRPS [44]. While there clearly is autonomicdysregulation [45], both the discussed rarity of SMP in those clinically particularlyproblematic long-standing cases, and the emergence of novel aetiological conceptshave contributed to prompting CRPS experts to de-emphasize the importance of theconcept of sympathetic dysfunction for advancing patient treatment.Central sensitization is the driving factor for CRPSCentral sensitization is the molecular process that corresponds to the clinicalobservation that after a period of intense or repeated noxious stimulation (a noxiousstimulus actually or potentially causes tissue damage), innocuous (non-noxious) stimulibecome painful and remain painful (for a while at least) even if the initial noxiousstimulation has subsided. This mechanism is important in most chronic pain [46]. SinceN-methyl D-aspartate (NMDA) receptors play a critical role in central sensitization, therecent observation in two RCTs that low-dose i.v. ketamine (an NMDA antagonist) candramatically reduce CRPS pain, indicates an important role for such centralsensitization [47, 48]. There is currently no RCT evidence for high-dose ketamine comaunder intensive care conditions, which has sometimes been discussed in the media[49]. In the two published low-dose RCTs, ketamine strongly reduced average painintensity for several weeks independently of the CRPS disease duration, but withoutimproving function. It is uncertain how these research findings will translate into clinicalpractice. Side effects from repeated ketamine infusions are poorly understood, andsome experts have expressed concern about potential neurotoxicity [50]. Currentprotocols for ketamine treatment are expensive and cumbersome. In the publishedprotocols, either a 5day hospital inpatient stay, or 10 consecutive working-dayoutpatient treatments are required to achieve pain relief lasting several weeks.Recently, a small pilot trial suggested efficacy of i.v. magnesium which, similar toketamine, may work to reduce central sensitization [51].Budapest diagnostic criteria (AD must apply). Note that it is possible to distinguishbetween CRPS-1 (without damage to major nerves) and CRPS-2 [associated with (yetnot causing) damage to a major nerve, a very rare presentation], but there is currentlyno RCT-derived evidence that this distinction has any consequence for treatment. a Thereflected understanding of allodynia as painful sensation to a number of normally non-painful stimuli is under review by the IASP taxonomy group. Some experts suggest thatthe term allodynia should be reserved only for brush-stroke evoked pain (dynamicmechanical allodynia). bHyperalgesia is exaggerated pain to a painful stimulus such asa pinprick. cFor example, raised systemic inflammatory markers are not associated withCRPS, even in the initial inflammatory phase; such a finding of raised markers wouldlead to a search for an alternative or concomitant cause. Abnormal nerve conductionstudies do not exclude CRPS, but the primary cause of the observed abnormality mustbe clarified: CRPS, by definition is always secondary, its presence cannot explain majornerve 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 allfour extremities. It can also be in the face, shoulders, back, eyes, and other areas of thebody as well. CRPS is an involvement of nerves, skin, muscles, blood vessels (causingconstriction, spasms, and pain) as well as bones. This is from the Orthopod website:Sympathetic nerves are responsible for conducting sensation signals to the spinal cordfrom the body. They also regulate blood vessels and sweat glands. Sympathetic gangliaare collections of these nerves near the spinal cord. They contain approximately20,000-30,000 nerve cell bodies. CRPS is felt to occur as the result of stimulation ofsensory nerve fibers. Those regions of the body rich in nerve endings such as thefingers, hands, wrist, and ankles are most commonly affected.When a nerve is excited, its endings release chemicals. These chemicals causevasodilation (opening of the blood vessels). This allows fluid to leak from the bloodvessel into the surrounding tissue. The result is inflammation or swelling leading to morestimulation of the sensory nerve fibers. This lowers the pain threshold. This entireprocess 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, theaffected area can become cool, have hair loss, and have brittle or cracked nails. Muscleatrophy or shrinkage, loss of bone density (calcium), contracture, swelling, and limitedrange of motion in joints can also occur in the affected limb. These are in part caused bydecreased 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 originalinjury occurred. RSD/CRPS can spread in up to 70% of the cases. However, in a smallnumber of cases (8% or less) it can become Systemic or body-wide. CRPS usuallyspreads up/down the same limb, or to the opposite limb but in an increasing number ofcases it spreads to other areas of the body.The pain of CRPS is continuous and it is widely recognised that it can beheightened by emotional or physical stress. Limbic system involvement suggests apropensity for trouble with sleeping, mood, appetite and sexual desire; in a study of 824patients 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 theyare 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 ofCRPS. 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 systeminvolvement and a higher prevalence of dystonia, this new stage (though the idea ofstages of RSD/CRPS has been abandoned by pain specialists) of the CRPS can bemanaged but is obviously.If you have developed Cold CRPS, trying to maintain mobility and keep movement inthe area is vital. Microcirculation is compromised, though little is known as with otherCRPS cases how to treat it. Obviously, heat therapy comes into its own here.Prognosis is not favourable for cold CRPS patients, longitudinal studies suggest thesepatients have poorer clinical pain outcomes and show persistent signs of centralsensitisation correlating with disease progression.Previously it was considered that CRPS had three stages; it is now believed thatpatients with CRPS do not progress through these stages sequentially. These stagesmay not be time-constrained, and could possibly be event-related, such as ground-levelfalls or re-injuries in previous areas. It is important to remember thatoftenthe sympathetic nervous system is involved with CRPS, and the autonomicnervous system can go haywire and cause a wide variety of strange symptoms.CRPS FrustrationComplex Regional Pain Syndrome is frequently dismissed by health professionals formany reasons including: They dont understand the diagnosis and/or they are not familiar with thedisorder. 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 isno cure (have hope!). CRPS is purely psychological and that it is nota medical condition, i.e. Its all in your head,which is clearly a myth. Many people who work within the health caresystem dread accepting a client with CRPSbecause they know that effective treatmentrequires an ongoing, almost daily assessment ofthe condition to develop the proper regimen. It isfar too time consuming for most clinics toadequately care for the patient. Generally,doctors like to cure not manage chronic illness. Due to the nature of RSD/CRPS, the conditioncan quickly change for better or worse forreasons that are not fully understood. Therefore it is necessary to scheduleevenly spaced treatment sessions in order to benefit, which is often not possiblefor many patients who now are unable to work. The health care provider must address the plan of care very carefully once thediagnosis is made and must thoroughly customise therapy for each ComplexRegional 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 alreadyover-taxed body. All individual characteristics (psychological, social, physiological) mustbe taken into account during therapy.Communication between the family members, health professionals, and the patientmust be clear, on-going and well established. It is common for the patient to have failedin a previous program if a positive, creative, caring relationship was not . If either thepatient or the therapist senses a communication problem, it is far better to acknowledgethat 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 notalways possible, especially if you live in a rural or remote area, this website can helpguide you in things that help improve your pain and function. Because pain involves thewhole person, to get the best outcomes treatments and management usually require acombination 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, thenthere are only the symptoms of RSD/CRPS to be treated. Successful treatment ofRSD/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 thetreatment of the RSD/CRPS process. The key approach is to provide adequate pain relief in order to undertakerehabilitation 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 painpathways in the brain do not become maladaptively rewired, making recoveryeven 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 thefour 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 goingto be put out. Now imagine it both hands, arms, legs, feet; well, you get the picture. Isometimes sit there and am amazed that no one else can see the flames shooting off ofmy body. The second component to CRPS is what is called Allodynia. Allodynia isan extreme sensitivity to touch, sound, and/or vibration. Imagine that same hand nowhas the skin all burned off and is completely raw. Next, rub some salt on top of it andthen rub some sandpaper on top of that! THAT is allodynia! Picture getting prettyvivid? 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, someonebrushing by you in a crowded hallway, etc. In addition, sounds, especially loud or deepsounds 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 typicalmovie theatre. This is what allodynia is all about. Imagine going through your daily lifewhere everything that you touch, or that touches you, where most every noise aroundyou from a passing car or plane to children playing, causes you pain. In addition to theenormous pain you are already experiencing from the CRPS itself. Imagine living withthat pain and allodynia 24 hours a day, every day, for months, years, and longer. Thereare many other symptoms which you can read about in our CRPS SYMPTOMS sectionbut these are the two main ones that most patients talk about the most. ~ Keith Orsinivia What Does CRPS Feel Like? American RSDHope.Fibromyalgia and CRPSAlthough many CRPS patients are later diagnosed with Fibromyalgia, the two arefrequently confused but remain vastly different in terms of day-to-day living and severityof symptoms. Some fibromyalgia patients are completely debilitated but even they canhave moments of reduced pain. CRPS is constantly at a severe level and personally, Ifeel the difference of character between the two pains also confirms the differencesbetween the two pain conditions. There may be a continuum, with dysautonomia andcentral sensitization being present in both but there are clearly distinct symptoms thatare present in CRPS that are absent in fibromyalgia.What You Can Do For Your CRPS:Pain educationTo manage pain and gain more control over your lifeand symptoms in spite of CRPS, you must understandhow pain behaves. Visit the Pain Management page formore info and watch a great video with the amazingProf, Lorimer Moseley, who banishes the jargon andoffers a description of the pain process that even themost unscientific of pain princesses can understand.How to Manage and Treat Complex RegionalPain SyndromeMobilisation & massage techniquesFor pain relief, to reduce stiffness, increase circulation, ease movement and gain agood sense of your body; all important in the recovery process but also if you need tospend a long time in bed or resting due to high pain levels. see Pain-Relief and Copingfor Severe Pain.Specific exercisesTo mobilise tight & stiff body regions, to develop normal control of movement; graduallyprogressing from just a couple of repetitions to ten (see a physiotherapist for guidanceon how to strengthen disused muscles).General exerciseTo progressively build up your tolerance and confidence for daily activity and yourchosen exercises; always keep within your limitations, increasing your timed activityvery gradually. Read this blog post on Therapeutic Yoga with a restorative yogasequence, which can be very healing and gentle enough to not cause a flare-up ofsymptoms; swimming/aqua physio is immensely helpful with RSD/CRPS.Graded exposure & pacingThere are often particular activities that are challenging, painful and sometimes avoidedfor fear of causing damage or harm. With new knowledge of pain and confidence tomove you can gradually re-engage with some of these activities. Pacing means that youset a baseline and work towards your goals, see the Pain Management page for moreinformation.Brain-Focused StrategiesModern neuroscience has delivered us new ways of approaching pain though ourunderstanding 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 ofsensory and motor training. For example, the graded motor imagery program and tactilediscrimination training.Mindfulness & focused attention trainingTo gain control over your attention and emotional regulation; there has been a spotlightplaced upon these techniques in recent years due to their effectiveness in stress andpain. We teach and practice mindfulness and other cognitive methods as a way ofreducing the emotional aspects of pain, to directly tackle stress and to optimiseperformance. Click here for an example of one of the mindfulness techniques.Imagery & visualisationMotor imagery is used as part of the graded motor imagery programme and as a standalone brain focused training. When we think about movement, the same areas of thebrain are active as when we actually move. Using this physiology within the corticalnetwork allows us to re-train normal movement (how the brain plans and then executesprecise and well controlled actions) at the early stages of rehabilitation. Visualisation isa way of changing the body physiology in a positive manner thereby benefiting thephysical self, mood and creating a positive context for rehabilitation.When it All Gets Too MuchThe suicide rate among RSD/CRPS sufferers is extremely high due to the intensity ofthe never-ending pain, sleep deprivation, frustration, social isolation, misunderstanding,and lack of support from medical professionals, family and friends. If you are a patientsuffering from depression and contemplating suicide, please, please get help SuicidePrevention / 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 / CentersFeeling suicidal is not a character defect, and it doesnt mean that you are crazy, orweak, or flawed. It only means that you have more pain than you can cope with rightnow. Please read this fantastic guide before you do anything that will leave everyonewondering if there was something that they could do. No matter how you feel in thismoment, 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 isalready excruciating flares up to being beyond comprehension in terms of pain (I knowIm often astonished at just how limitless the variety and intensity of pain can be), and itis 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 addedregularly.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. Considerjoining a community who knows how youre feeling and speak with members who havefirst-hand experience with depression stemming from RSD/CRPS.