The Princess in the Tower - RSD/CRPS
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chronic pain

Complex Regional Pain Syndrome (CRPS/RSD)

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 (dysautomnia), leading to constant pain that is recorded as being as severe as finger amputation without anesthetic, It can be devastating for patients as is often diagnosed too late to hope for remission, though it is vital to never give up hope, despite the devastating odds, people can and do go into remission; sadly, however, this is a small percentage.

CRPS is a severely disabling condition characterised by burning pain, increased sensitivity to tactile stimuli, and sensations of pain in response to normally non-painful stimuli such a light touch, a breeze, sound, vibration, blight lights etc. (Birklein et al., 2000; Wasner et al., 2003). In addition, the syndrome 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). In most cases the upper or lower limb is affected, but also other body parts, or many different body parts at the same time (as with 'full body CRPS') can be involved (Stanton-Hicks et al., 1995) including internal organs.

According to Bruehl and Chung (2006), CRPS should 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 (Jänig 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. It is ranked as the highest form of chronic pain that exists in medical science today, reading 42 on the McGill Pain Scale (see the scale in pictures at the bottom of the page, where 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 emotional trauma can cause CRPS or indeed increase its chance of 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.
  • 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. 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 literally 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 is a debilitating disease also involving the human 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 spider’s 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 a variety of symptoms that can cause debilitating consequences. There can be many symptoms, but the most common one is severe, 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 Reflex Sympathetic Dystrophy or RSD 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 common name used 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.

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. Please raise awareness about Vitamin C:

To prevent getting CRPS/RSD:
ALWAYS TAKE 1000mg/day VITAMIN C AFTER ANY SPRAIN OR STRAIN
Research shows that it can help to prevent CRPS/RSD from developing!

RSD/CRPS Causes

  • - Trauma (often minor)
  • - 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

In many cases, a definite cause of CRPS Type 1(RSD) has never been found. It is not known why these factors cause CRPS but there are many hypotheses that are the subject of research around the world even today. 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
  • - 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.
 
The main difference between CRPS type 1 (RSD) and CRPS type 2 (Causalgia) is that Type 2 is caused by a proven nerve injury. Recent research  shows CRPS Type 1 is nerve injury and NOT a somatic disorder. The symptoms of both diseases are identical.
 
There are four cardinal signs that indicate Complex Regional Pain Syndrome Type 1 and 2 - the outward signs can become more infrequent as time goes on, making diagnosis even more difficult and other people's belief hard to come by. The signs are:

Pain Management
PAIN
is constant and characterized by burning. This unrelenting pain is enhanced with every movement. 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.

 
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 RSD/CRPS.  Early in the course of the disease, this inflammatory process causes edema.  The swelling in RSD/CRPS may exist far longer than it would take normal tissue to heal because RSD/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 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.

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 Patient's 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. RSD 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’ 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 often the sympathetic nervous system is involved with CRPS, and the autonomic nervous system can go haywire and cause a wide variety of strange symptoms.

Depression help
RSD/CRPS Frustration

Reflex Sympathetic Dystrophy/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.
  • RSD/CRPS is thought to be hopeless and there is no cure. (There is hope!)
  • RSD/CRPS is purely psychological and that it is not a medical condition, i.e. “It’s all in your head” (this is a myth).

Many people who work within the health care system dread accepting a client with RSD because 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 RSD patient.

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 the patient.

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 patient 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 patient’s progress.

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:



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. Please read this fantastic guide before you do anything that will leave everyone wondering if there was something that they could do. 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 I'm 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 Coping With a Chronic Illness for help with depression; especially 'Are you in Crisis? Coping When it All Gets Too Much' at the end of the page.

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 RSD/CRPS.
The Princess in the Tower Facebook page is another lovely space to meet others with RSD/CRPS.
 
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 (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 Natural Ways to Ease 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.

Retraining the Brain
Normally we have a mental map of where the body is in space and this allows us to function without having to constantly check where we put our hand to pick up a glass or which is the left or right hand. This ability can be lost in CRPS making it hard to recognise, which is the right or left side of the body.

This altered function seems to be part of the reason that pain persists in CRPS. The Graded Motor Imagery program helps you to re-train the recognition of where the body is in space. For more information about GMI, go to the GMI website and also visit the Neuroplasticity page here.

  • Effective sympathetic blocks by blocking nerve impulses with anaesthetic agents used in severe pain. Blocks may provide permanent or temporary relief. Sustained physical therapy to maintain flexibility, strength, and range of motion are recommended. No use of the limb can result in atrophy and eventually not being able to use the limb. They do not, however, help once the pain becomes sympathetically independent.
  • Mirror Therapy can help in the early stages of CRPS. This procedure aims to "teach" the brain that the limb where pain is being felt is actually OK. A mirror is set up between the limbs so that the injured one is hidden, but the mirror image of the unaffected limb looks like the one that has been hurting. Both limbs are exercised but the injured one is hidden. The brain "sees" what looks like the painful limb working OK without pain and "learns" that it can be moved without harm, see mirror therapy for more information.
  • Graded Motor Imagery is showing great promise, even in long-term cases of CRPS, visit the Neuroplasticity page for more information on this healing technique.
  • Progressive management techniques, if necessary for example, biofeedback to control pain and blood flow, pain management techniques, counseling, etc.
  • Hyperbaric Oxygen therapy had has amazing results with CRPS, even in long-term CRPS and is especially useful as no painful manipulation is applied.
  • Acupuncture can be helpful at all stages of CRPS, not just for pain but for side-effects from medication and overall well-being. However, it can be difficult to find an acupuncturist who is knowledgeable [or gentle] enough with regard to managing CRPS. Asking for extra fine needles can make a huge difference. Never needle the epicenter of where the CRPS began as it can cause a flare-up of symptoms.
  • Reiki and healing can be very relaxing for sufferers and is another hands-free therapy.
  • Myofascal Release taken slowly and gently on the body in long-term RSD (avoiding parts of the body that are too painful, hyperalgesic or allodynic), can be immensely healing body work, especially if you have been bed-bound or sedentary due to your pain.
  • Using a transcutaneous electrical nerve stimulation machine (TENS) can help confuse the pain signals, thus reducing them and is a helpful aid.
  • Practicing Mindfulness and meditation can help ease some of the symptoms and help the patient relax, in turn reducing pain.
  • Hydrotherapy and aqua therapies (as this video link video shows), can help CRPS patients immensely. One particularly healing therapy is Watsu, which not only relieves pain and increases flexibility, it is also incredibly relaxing and calming to the nervous system, see the video on the Natural Ways to Ease pain page.






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RSDSA Aqua Therapy: A Key Ingredient In Treating CRPS
Aqua Therapy: A Key Ingredient in Treating CRPS, shows the important role that aqua therapy plays in the interdisciplinary treatment of people with CRPS

What You Can Do For Your CRPS:

  • Pain education - to manage pain and gain control you must understand it, visit the Pain Management page for information on pain (and watch a great video with Professor Lorimer Moseley).
  • 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 Natural Ways to Ease Your 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, 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.

As more is being understood about CRPS, treatment and management strategies are moving forwards. In particular, the techniques that target the brain changes that occur in CRPS and other pain states such as the graded motor imagery programme. There have been numerous studies showing us that these changes take place in both the motor and sensory cortices, underpinning some of the main experiences in CRPS such as pain, altered perception and movement control. 

Click these links for more information:

It is the job of the practitioner to give advice concerning the limits of the patient’s endurance. The outcome of the treatment is not only in the hands of the doctor or physical therapist but very much in the hands of the patient. Pain management clinics work wonders for millions of people every year. Listening and following the advice regarding pacing, mindfulness, relaxation techniques and learning about pain can all be an immense aid. The patient, doctor and therapists have to work together towards the common goal.

Too much or too little exercise of an affected limb is not good. It often requires an adjustment of lifestyle and sensible handling of the burden of the affected arm or leg. Rehabilitation is appropriate and must be on-going. One must make the circumstances for recovery as favourable as possible.

Long-term RSD/CRPS

Then there’s the undiagnosed for so many years (ideally remission should occur within the first three months to a year), who are left with a body wracked with chronic pain. This in long-term RSD/CRPS and is tough on patients, their lives, family and friends but help is here. If you suffer with long-term RSD/CRPS you have come to the right place. There are a myriad of healing techniques that will keep being added to this and other pages on this site. For now, sign the guest book and share your story or join our facebook site for up to the minute research and positive posts.


The longer a patient of Complex Regional Pain Syndrome waits to be diagnosed, the lower the chances of remission. Delayed treatment can lead to permanent bone and muscle changes but sadly most doctors are not aware of Complex Regional Pain Syndrome. The overall response to treatment is poor. In at least half of cases, people with Complex Regional Pain Syndrome are still in pain months and even years later. CRPS can get worse over time, and may spread to other parts of the body. In addition, any further traumas to the body are at risk of the pain spreading to the injured area and RSD/CRPS can manifest in any areas of the body.
Sympathetic blocks do not work once the pain has become sympathtically-independent or 'centralised'. It can be described as the brain learning the pain, like it learns a new language, and it keeps sending pain signals even when no tissue damage is present. Other conditions, such as fibromyalgia, are common with Reflex Sympathetic Dystrophy and the two often go together.

What Does RSD/CRPS Feel like?

Here is a short piece on how RSD/CRPS is perceived by the patient, written by Keith Orsini of RSD Hope. He makes the interesting point: "If you have only had it for a year or two you aren't as skilled at hiding your pain, or controlling it, as someone who has had it for ten or more. I think long-term chronic pain patients get so good at masking their pain, our pain, that when we have to reveal it, when we come upon circumstances where medical professionals need to see the actual level of pain we are in, it is difficult for us to convey the depth of the pain, to truly let down our guard, those walls we have built up, for fear of not being able to put them back up again." The article also has advice for how to gauge your answer - when asked this question as a patient.

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RSD Central Sensitization.mpg
This video clip explains very well what happens in RSD or CRPS. This is called Central Sensitization of the Central Nervous system. On a molecular basis the NMDA receptors are activated.




Further Information
For more information about CRPS management visit the International Research Foundation for RSP / CRPS.

UK CRPS News:

Iain Stewart, Conservative MP for Milton Keynes South, moved a debate on complex regional pain syndrome on July 9th 2013. The Minister of State for the Department for Health, Norman Lamb, responded on behalf of the Government. Well worth a watch, especially if you live in the UK.

If you can, please e-mail your MP. Tell them the name of this condition, that it is the worlds most painful incurable disease and as much of your story as you are comfortable with, at the very least tell them how long and how many doctors before you were diagnosed. 95% of the NHS have never heard of CRPS despite how debilitating it is for sufferers.

Thank you MP Iain Stewart - you officially ROCK!