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.
- 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'
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.
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:
ALWAYS TAKE 1000mg/day VITAMIN C AFTER ANY SPRAIN OR STRAIN
Research shows that it can help to prevent CRPS/RSD from developing!
- - 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:
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.
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.
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
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
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.
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.
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.
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.
UK CRPS News:
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!