NOTE: This is all taken from an incredible website that helped me when I was first diagnosed. I frequently look at it to feel like I am not alone, not losing my mind and for tips and tricks in managing pain. The following is directly copied, please refer to this page for further information: http://princessinthetower.org/complex-regional-pan-syndrome-crpsrsd/
Complex Regional Pain Syndrome (CRPS), or Reflex Sympathetic Dystrophy (RSD), as it was previously known, is an excruciating chronic and complex disorder of the autonomic nervous system (dysautonomia), leading to constant pain that is recorded as being as severe as finger amputation without anesthetic.
CRPS is a severely disabling condition characterised by burning pain, increased sensitivity to all stimuli, and sensations of pain in response to normally non-painful stimuli including: light touch, a breeze, sound, vibration, bright lights and more. (Birklein et al., 2000; Wasner et al., 2003).
In addition, CRPS is characterized by motor disturbances such as weakness, tremor and muscle spasms (Veldman et al., 1993), and sympathetic dysfunction, such as changes in vascular tone, temperature changes and increased sweating (Birklein et al., 1998; Wasner et al., 2001).
Neurological effects of CRPS, including long term cognitive and mood changes (Marinus, J. et al, (2011) in ‘Clinical Features and Pathophysiology of Complex Regional Pain Syndrome’, The Lancet Neurology’, Vol 10, Issue 7, pp637-648) may be incorrectly treated as existing seaparetly from the condition, however new research will hopefully help raise awareness. It has been shown that neuropsychological deficits are present in 65% of CRPS patients, including deficits in the executive functions, for example planning, organising, self-awareness, self-regulation and initiation of action, word recall lexical memory and conscious memory of events declarative memory.
Sleep is massively affected, though this is unsurprising given the CNS and ANS changes and of course, constant severe pain (Schwartzman, R.J., et al. (2009) in ‘The Natural History of Complex Regional Pain Syndrome’, Clinical Journal of Pain, Vol. 25, Issue 4, pp. 273-280).
n most cases an upper or lower limb is affected but spreading can and does occur to other body parts, or many different body parts at the same time (as with full body or systemic CRPS) can be involved (Stanton-Hicks et al., 1995) including internal organs.
CRPS is ranked as the highest form of chronic pain that exists in medical science today
Reading 42 on the McGill Pain Scale (RSD/CRPS is referred to as Causalgia, which is Latin for “burning pain”). CRPS is a debilitating disease if not treated promptly and properly. The onset of CRPS usually follows a trauma, injury or surgery and increasing evidence suggests that psychological trauma can cause CRPS or increase the chance of its development after an injury by an estimated eight times.
Without going into a full-blown description of the disease let us initially concentrate on the four main symptoms:
Constant chronic burning pain – also throbbing, aching stabbing, sharp, tingling, and/or crushing in the affected area or areas. Allodynia is a huge problem with RSD/CRPS (extreme pain response from innocuous stimuli); even a light breeze can cause pain, let alone the noise, lights, crowds and vibrations, all having a debilitating and life-limiting effect. In CRPS normal inputs such as touch, stroking and movement are misinterpreted as painful. This ongoing “painful” interpretation is a big part of the problem.
Inflammation – is not always present. It can take various forms, the skin may appear mottled, become easily bruised, have a shiny, dry, red, and tight look to it. An increase in sweating usually occurs as well.
Spasms in blood vessels and muscles of the extremities – this results in a feeling of coldness in the affected extremity, which feels like ice between the bones or fire burning the affected areas. Because of an inability to regulate our inner thermostats, touching something cool can be excruciating or cause freezing or burning pains. It depends on how long the CRPS has been present, and whether it is typically ‘hot’ CRPS or ‘cold’ CRPS.
This is as well as body fatigue, skin rashes, occasional low-grade fever and sore throats; swelling (edema), sores, dystonia, and tremors. The spasms can be confined to one area or be rolling in nature, moving up and down the leg, arm, or back.
Insomnia/Emotional Disturbance – CRPS affects the limbic system of the brain. This causes many problems that might not initially be linked to a disease like CRPS, among them are depression, insomnia, extreme difficulty concentrating, and short-term memory problems. Cognitive difficulties similar to fibro-fog are prevalent, simply due to the sensory overload of constant severe pain.
The sympathetic nerves become overactive and can cause extensive symptoms that in turn cause debilitating consequences. There can be many symptoms but the most common one 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 CRPS in the face or organs are some extreme examples. Symptoms may vary with each individual who has Complex Regional Pain Syndrome or CRPS/RSD.
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.
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.
The following excerpt is taken from the America RSD Hope website:
1) The CONSTANT PAIN can be described as a burning pain. It feels as if a red hot poker were inserted into the affected area. it is also described as throbbing, aching stabbing, sharp, tingling, and/or crushing in the effected area; this is not always the site of the trauma. The effected area is usually hot or cold to the touch. The pain will be more severe than anticipated for the type of injury sustained. This is a hallmark of the disease. Allodynia is typically present as well. Allodynia is an extreme sensitivity to touch, sound, vibration, barometric pressure changes, loud noises, wind/breeze, temperature, clothing, and even the gentle touch of a loved one. This makes it increasingly difficult on the spouses, children, and other family members; as their softest touch can now cause pain instead of comfort. If the patient has not been properly diagnosed yet and these sensations not properly explained, these symptoms can cause extreme duress and confusion to all involved. For more on “What Does CRPS Feel Like” click here.
2) INFLAMMATION is not always present in the same form but it can take various forms; the skin may appear mottled, become easily bruised, bleeding in the skin, small red dots, have a shiny, dry, red, and “tight” look to it. In addition; increase in sweating usually occurs as well as swelling in and around the joints (shoulders, knees, wrists). In some patients a lack of sweating may occur, and some even go back and forth between the two.
3) The SPASMS result in a feeling of coldness in the effected extremity as well as body fatigue, skin rashes, low-grade fever, swelling (edema), sores, dystonia, and tremors. The spasms can be confined to one area or be rolling in nature; moving up and down the leg, arm, or back. They can involve not only muscles but also blood vessels.
4) The fourth part of this square is INSOMNIA and EMOTIONAL DISTURBANCE. CRPS affects the limbic system of the brain. Doctor Hooshang Hooshmand described it well: “The fact that the sympathetic sensory nerve fibers carrying the sympathetic pain and impulse up to the brain terminate in the part of the brain called “limbic system”. This limbic (marginal) system which is positioned between the old brain (brainstem) and the new brain (cerebral hemispheres) is mainly located over the temporal and frontal lobes of the brain.” This causes many problems that might not initially be linked to a disease like CRPS; chief among them are depression, insomnia and short-term memory problems but also includes agitation, irritability, and possibly even poor judgement.
CRPS can cause Depression, NOT the other way around. Read more here: RSD Hope – What is CRPS?
Here are some of the many symptoms of CRPS/RSD:
- Skin temperature, skin colour changes
- Pain caused by innocuous stimuli, for instance sound, vibration, light touch, even someone in the room can increase pain. Allodynia is pain from thing that you would never expect to cause pain, while hyperalgesia is an exaggerated pain response, so far more pain than should result from a stimulus.
- Tremors, shakes, spasms and muscle contractions that can cause unusual movements and postures (dystonia)
- Temperature changes and inability to regulate temperature
- Changes in hair/nails/skin
- Sweating changes, sometimes sweating varies from one side of the body to the other
- Fluid build-up causing swelling (edema)
- Lower bone density as they become more porous (osteoporosis)
- Avoiding using the part of the body which hurts, which then causes additional problems like the muscles starting to waste away through lack of use (atrophy)
- Central Nervous System (CNS) dysfunction and hyperactivity.
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 or exaggerating their pain.
- CRPS is thought to be hopeless and there is no cure (have hope!).
- CRPS is purely psychological and that it is not a medical condition, i.e. “It’s all in your head”, which is clearly a myth.
- Many people who work within the health care system dread accepting a client with CRPS because they know that effective treatment requires an ongoing, almost daily assessment of the condition to develop the proper regimen. It is far too time consuming for most clinics to adequately care for the patient. Generally, doctors like to cure not manage chronic illness.
- Due to the nature of RSD/CRPS, the condition can quickly change for better or worse for reasons that are not fully understood. Therefore it is necessary to schedule evenly spaced treatment sessions in order to benefit, which is often not possible for many patients who now are unable to work.
- The health care provider must address the plan of care very carefully once the diagnosis is made and must thoroughly customise therapy for each Complex Regional Pain Syndrome patient.
Many patients suffer needlessly through a lack of understanding from their GP/doctor, resulting in insufficient pain management that causes additional stress on an already over-taxed body. All individual characteristics (psychological, social, physiological) must be taken into account during therapy.