Complex Regional Pain syndrome
CRPS and Neuropathic pain
Historically, CRPS has been considered a type of neuropathic pain, but over the last few decades of research, it is widely accepted and formerly documented, that CRPS, in particular CRPS type I, is not a type of neuropathic pain and people experiencing CRPS may need a very different type of therapeutic work than people with neuropathic pain.
This is not to say that there are no similarities and the work being done on both conditions is supporting us to know more and more about these complex pain conditions.
It’s important to know that whilst pain is a complex experience all of the time, we as a research and therapeutic community, are working hard to understand the sub-groups in pain experiences like CRPS and Neuropathic pain and the goal is always TO REDUCE A PERSON’S EXPERIENCE OF PAIN.
I hold my clinical practice to the standards of the International Association in the Study of Pain (IASP) and have been a member for 10 years. I am member of the European Pain Federation (EFIC) and in the process of taking their exam for Physiotherapists.
The Declaration of Montreal came as the World Health Organisation formalised the protection of pain and access to pain reducing approaches as a fundamental human right.
This places the goal of pain reduction as a human right and in my therapeutic work with people we explore this in detail. Pain reduction is not the same as pain relief and this is the uncomfortable reality for many people living with complex conditions.
Pain reduction, functional restoration and living well is rarely achieved by medical interventions and medication alone.
For this reason, when a person shows signs of developing complex and persistent pain, we should work hard to ensure that there is specialised collaborative working between the professions.
Article 5. The right of people with pain to assessment and treatment by an appropriately educated and trained interdisciplinary team at all levels of care. (In resource-poor countries the team should include, at a minimum, a doctor and a nurse with training in pain management).
The minimum is not what I aim for in my practice and absolutely not ethical in resource-rich countries like the Netherlands, other Western European countries and beyond.
This is why I work exclusively with CRPS and neuropathic pain and why I trained in psychologically-informed physiotherapy.
Because access to specialised and informed therapeutic care is a human right.
What is CRPS
Answering the question “What is CRPS?” is not as simple as you might hope it to. be. CRPS has a wide set of clinical and symptomatic features and a person can be diagnosed with CRPS with all or some of the documented features. There are also ‘formal’ sub-groups within CRPS recognised by the World Health Organisation and the International Classification of Diseases, and ‘in-formal’ sub-groups that are currently not officially recognised but are gaining in public and clinical use.
This makes talking about CRPS and explaining what is medically know, and what is experientially known, about CRPS difficult.
The general presentation of CRPS is similar across all sub-groups, which means that many researchers and clinicians contest the need for sub-groups. however, they remain the formal diagnostic differentiation and so it is useful to understand them and be able to identify the clinical differences.
CRPS is characterised by:
Pain - usually on one side in the hand or foot
Abnormal regulation of blood flow (warm/cold) and sweating
Oedema / Edema (swelling)
Movement disorders like tremors and spasms
Trophic changes to the skin (thinning of the skin), changes in hair growth and nails
Historically we understood CRPS as a disorder of the peripheral nervous system or autonomic system. However, we are increasingly understanding this condition as a whole person experience that includes changes across multiple physiological systems that help us to process information about how and what our body is doing.
Often, medicine will try and find out the one mechanism or biological system that is at fault in order to direct treatment, but CRPS can no longer be understood in this way if we are to offer people with CRPS the hope of reduction and successful management of their symptoms.
Taking a whole person approach means exploring the person’s individual and unique biology, psychology and sociology to be able to make sense of their pain and the cost of their pain.
There are currently four recognised sub-catagories of CRPS:
CRPS Type I (historically called Reflex Sympathetic Dystrophy RSD): known neuropathic lesion present
CRPS Type 2: Associated neuropathic lesion
CRPS with some remitting symptoms
CRPS NOS (not otherwise specified)
Cold/Warm CRPS are not formally recognised sub-groups but many people feel that they are helpful informal labals.
Diagnosis of CRPS
There is no single test, blood test or scan to diagnosis of CRPS and it is done clinically using the Budapest Criteria (see table below) in collaboration with the patient and their reported experience.
In 2021 the working group for the International Association in the Study of Pain (IASP) met and produced the Valencia update . The update is particularly aimed at clinicians navigating the diagnostic phase for CRPS.
There were several clinically important changes that support patients to obtain a diagnosis of CRPS:
CRPS no longer falls under the category of “focal or segmental autonomic disorder” but is now considered a Chronic Primary Pain Condition. This change does not dismiss the autonomic system as being involved CRPS, but means that we acknowledge it is not the only system involved in CRPS. There is strong evidence that autonomic disregulation is a key factor in CRPS, but it is understood that this is part of a wider and more complex process.
Sub-categories: As mentioned above, IASP has added a 3rd sub-category for patients who see remission in some of their symptoms of CRPS which previously would have meant losing the diagnostic label of CRPS. This is important as it will support more people with CRPS to maintain access to multi-disciplinary and specialised care.
The group have retained CRPSI and CRPSII as clinically distinct groups, but this is currently under contention and further research as differences between these groups are subtle.
CRPS NOS is retained exclusively for people diagnosed with CRPS prior to the Budapest criteria who may not fulfil the necessary criteria if tested under the current framework. This means that we continue to support people with a historical (pre-2004) diagnosis of CRPS and acknowledge they do have CRPS, and therefore should be treated accordingly.
The diagnostic procedure must be adhered to and made in collaboration with the patient. All questions on the criteria should be asked. This is helpful to patients who may not be showing signs such as temperature change or oedema in the clinic but can confirm that these are present. at other times.
The aim of the IASP working group is to support earlier and effective diagnosis of CRPS, because we have increasingly strong evidence that early detection with early access to targeted pharmacological (physiotherapy and psychology) and pharmacological (medications, infusions etc) offers the person the strongest chance of recovery.
What is Neuropathic Pain
There are many reasons for a person to experience neuropathic pain and the symptoms of neuropathy and neuropathic pain can be highly varied. Not all neuropathies are painful.
The exact cause of neuropathic pain is still being researched, but it is unlikely to be reducible to one tissue or mechanism because our understanding of ‘pain’ now includes the entire complex interaction between all systems of the body. However, there is diagnostic guidance that can help people with this type of pain condition to understand their pain more.
Neuropathy is typically diagnosed when there is a known lesion to the peripheral nerve which may be secondary to an underlying condition such as Diabetes or HIV, secondary to chemotherapy and radiotherapy in cancer-related neuropathy, or secondary to injury.
It can be local to one particular region associated with a particular branch of the nervous system, (neuropathy) or it may involve multiple branches (polyneuropathy).
As the branches of the nervous system in the body (legs, arms torso etc) are involved in the processing of bodily actions and environments (movement, inflammation etc) the symptoms can be highly complex and varied. Your symptoms may be brought on by stimulation such as load noise, touch or movement (stimulus-dependent) or they can come on seemingly from nowhere (stimulus independent).
Typically we see pain symptoms that may include some or all of the following:
Hyperalgesia (means increased pain) with movement or touch: increased experience of pain to things would normally include pain - such as a pin prick, touch and pressure
Hyperalgesia with heat: Feeling warm temperatures as painfully hot that wouldn’t normally be felt as painfully hot - Patients often find their usual shower temperature painful like when we have sunburn
Hyperalgesia with cold: Feeling cold temperatures as painfully cold
Burning type pain
Diagnosis of neuropathy and neuropathic pain
Typically, diagnosis comes when the clinical history and reported symptoms fit with neurophysiological testing like quantitative sensory testing, nerve conduction studies or imaging. However, a person may be diagnosed with neuropathic-type pain if the symptoms are present but no lesion can be demonstrated.
As with CRPS, we are typically looking for an alteration in the way information about the body (like movement, touch etc) is processed or felt by the person. We often see hyperalgesia as above alongside symptoms like alteration in mood, anxiety and sleep interruption.
Why see a specialist therapist for CRPS and Neuropathic pain?
It is important to know that neuropathic pain and CRPS are distinct conditions, although both are often highly disabling.
Most physiotherapists are trained in basic management for simple neuropathic-type pain, but may not have the deeper knowledge, experience and support required to offer patients with complex neuropathic pain and / or CRPS the best opportunity for recovery where possible, or successful self-management, symptom management and living well.
When working with these conditions, an Advanced Practice Physiotherapist will complete a different assessment than is typical within general MSK (injury-focused) physiotherapy. We place a greater emphasis on neurological, cognitive, functional and social assessments which might mean that the process takes several sessions.
Further, our treatment approaches are also often very different as we focus less on traditional chiropractic manual therapies and strength and conditioning, to focus more on functional and neurological retraining, transformative coaching and approaches informed by psychological skills such as CBT or Acceptance and Commitment Therapy (ACT).
Typically, we use a form of graded exposure that integrates cognitive and behavioural approaches with movement and context-specific approaches.
What does specialised therapy for neuropathic pain look like?
The first few sessions are an introduction between us and focused on you, your pain and the cost of your pain in your life. It's where we will find out what is working well for you with your pain and and areas where you need extra help and support.
I may also ask you to fill out some questionnaires and explore movements and touch with you.
If you've been to a physiotherapist before, you will have some expectations about how Physiotherapy 'should' look. Please don't be surprised if sessions with me are different to what you are used to. As a psychologically-informed neuro-musculoskeletal physiotherapist and pain coach, the types of assessments and work i suggest for us to try may feel very different and we may spend a lot more time talking and getting to know each other.
I will want to assess the types of touch, movement and imagery that you can explore without pain in order to find out where in therapy process we are best to begin. This might mean trying out different types of touch like light touch, vibration or different temperatures, it may also mean showing you photos or pictures of bodies in action, asking you to think about your body or to reproduce movements and beyond.
The therapy can be quite a creative process and the relationship of trust between us is most important.
It is important to state that at all times you are in control of the process of assessment. You will never be required to do anything or share anything that you feel would be harmful to you or too much for you. The early stage of working with a specialist therapist can be intense, but remember that you set the boundaries around our work.
It is also important to state that it is not necessary to reproduce your pain for me to believe that you have pain. The goal of these sessions is to support you with pain reduction and successful self-management, to feel more pain is not the goal.
How long will treatment last?
Both neuropathic pain and CRPS are long-term pain conditions, meaning they require long-term therapy support, but this does not mean that you need to be seen multiple times a week for months and months. Much of the change you will see in your symptoms comes from integrating the approaches and techniques on a daily basis.
The regularity of your sessions will depend on your case, your insurance or financial capacity for therapy. It is not so much about what I do in our sessions, but what you are able to do between sessions. I will be your guide and through a mix of in-person sessions, virtual sessions and between session support via text or group.