Reflex Sympathetic Dystrophy/ RSD/CRPS

Reflex Sympathetic Dystrophy/ RSD/ CRPS/ NID/ Causalgia/RND

RSD/ Reflex Sympathetic Dystrophy Syndrome aka CRPS/ Complex Regional Pain Syndrome, Causalgia, Reflex Neurovascular Dystrophy

 

This syndrome has changed names over 20 times throughout history and is projected to again change names as more bio-mechanical information is discovered. Other names include: Post Sympathectomy Pain, Hyperpathic Pain, and Mimocausalgia, among many others. This condition is a progressive neurological condition that can affect one extremity or all 4, and can go full body. It also can affect the immune system, skin, muscles, joints, and bones. The pain can start in one area but spread to other areas of the body. The syndrome usually develops after a minor insult to the body, such as whiplash, sprain, broken bone, or following surgery and in a few cases, no precipitating insult can be identified. RSD/CRPS is characterized by constant burning pain at various levels but always present. Patients may also see excessive sweating, swelling, and sensitivity to touch. RSD can go into remission for a period of time and then reappear with a new injury. This most commonly occurs when it is treated within the first 9 months with appropriate care.

 

Things to remember:

 

Minor injuries, such as a sprain or a fall are frequent causes of CRPS. One characteristic of CRPS is that the pain is more severe than expected for the type of injury that occurred.

Early and accurate diagnosis and appropriate treatment are key to recovery, yet many health care professionals and consumers are unaware of its signs and symptoms. Typically, people with CRPS report seeing an average of five physicians before being accurately diagnosed.

CRPS is two to three times more frequent in females than males.

The common age at diagnosis is 42 years. However, more injuries among young girls, and children as young as 3 years old can get CRPS.

This is not a psychological syndrome, but people may develop psychological problems when physicians, family, friends, and co-workers do not believe their complaints of pain. RSD has been categorized with two types, although both share the same signs and symptoms.

Millions of people in the United States suffer from RSD. It affects woman 3 to 1 over men and it can occur at any age. According to Dr. Schwartzman, a leading doctor in the field of RSD treatment, RSD appears to involve a complex interaction among the sensory, motor, and autonomic nervous systems, and the immune system. The brain and spinal cord (central nervous system) which as control over these various processes is somehow changed as a result of an injury. Early treatment is the key, Leading experts now believe that any invasive procedure or injury can cause the RSD to worsen or spread. Treatments such as spinal cord stimulators, pain pumps and sympathectomies are now considered contraindicated. As well application of ice to the affected areas is also not recommended. Ketamine Infusions are believed to be the future standard treatment for RSD by top doctors in the field and have been very successful to date. There are not many doctors performing this procedure and wait lists are extremely long for the doctors who are successful with it. The protocol makes a difference, be sure to check with your doctor(s) prior to any treatments or medical intervention. Other treatment modalities include nerve blocks, massage, traction for upper extremity, proper posture, medications At this time, there is no cure, but the bio-mechanical mechanisms are now known and progress for a cure is underway. At this time the closest thing to a cure is Ketamine Infusions and hope.

 

Symptoms

Pain-

Aching, Burning, Crushing, Dull, Electric, Feeling as if your on fire, Sharp, Stabbing, Throbbing, Tingling are some ways to describe our pain.

The pain can be anywhere around the affected area , not always right where the trauma was.

The affected area is usually hot or cold to the touch.

The pain will be more severe than expected for the type of injury sustained

Lowered threshold to pain from external stimuli

Extreme sensitivity to touch-Something as simple as a slight touch, clothing, sheets, even a breeze across the skin on the affected area can cause an extreme amount of pain to the patient.

Hearing/Vision-

Pain can also be exacerbated by sounds and vibrations, especially sharp sudden sounds and deep vibrations

The softest touch can now cause pain instead of pleasure

Horner’s syndrome

Tinnitus (ringing in the ears)

Visual disturbances such as blurriness, dry eyes and others

Dizziness, Vertigo, Balance

Swelling-

It takes various forms, the skin may appear mottled, become easily bruised, have a shiny, dry, red, and tight look to it.

Swelling is not always present.

Swelling can spread to involve a larger area and becomes brawny (hard).

Sweating-

An increase usually occurs

Spasms-

The spasms can be confined to one area or be rolling in nature; moving up and down the leg, arm, or back.

Body fatigue

Coldness in the affected extremity

Dystonia

Low-grade fever

Skin rashes/Sores

Tremors

Emotional Disturbances-

Depression, Pain CAUSES Depression, NOT the other way around

Agitation

Irritability

Short-term memory problems-

Many patients think they are losing their mind as their ability to remember things, greatly decreases.

Things like whether you took your pills this morning and what you were just talking about etc.

You are NOT losing your mind.

Loss of short-term memory is part and parcel of Reflex Sympathetic Dystrophy/RSD and other Neuropathies.

Other signs of problems here would include the inability to think of, um, well, ah, hmm, just the right word.

The patient’s ability to concentrate is also lessened while their level of irritability is increased.

These problems get even worse as the sleep cycle continues.

Sleep Disorder/Insomnia-

Insomnia is often seen, also disrupted sleep pattern. Some Medications help this

Not allowing the body to drift into REM, or rapid eye movement, sleep

REM sleep allows the body to use its own healing abilities. Without it, the patient’s pain cycle continues and becomes more entrenched

As the body cannot heal itself, it becomes harder to achieve that sleep which makes the pain worse and so the cycle continues

Limbic system of the brain, This causes many problems that might not initially be linked to a disease like RSD

Bone Changes-

Softening of the bones, Osteoarthritis, Osteoporosis, joint stiffness/ tenderness.

Thinning and weakness of your bones become more evident

At risk for more fractures

Color/Skin Changes-

Skin may turn shiny, red, dry and tightened; increased sweating, temperature.

Skin may atrophy

General Weakness-

Increased body fatigue, fever, rashes, sores, swelling also possible

More susceptible to illness/viruses (colds/flu/infection)

Increased Tone-

Muscle and skin tightness

Edema – swelling that is usually localized to the affected limb and may have a well demarcated edge

Muscle cramps

Movement Disorders-

Difficulty in beginning movement of the injured part or moving it in general

Joint stiffness resulting in limited range of motion

Permanent damage to muscles and joints

Increased reflexes

Tremors of the extremity and muscle spasms

Vascular-

Constriction of blood vessels, arteries, veins

Thoracic Outlet Syndrome

Ischemia (intestines, heart..)

Headaches, Migraines, Optical Migraines

Nails/Hair-

On affected extremity, they may grow at an increased or slower rate become grooved and brittle.

Hair may become coarse and may be followed by hair loss

 

Treatments

The general strategy in CRPS treatment is often multi-disciplinary, with the use of different types of medications combined with distinct physical therapies. The treatment principles in children and teenagers are similar.

 

Scrambler therapy uses direct nerve electrocutaneous stimulation to produce analgesia via the MC-5A computerized medical device. The MC-5A recently gained FDA clearance for use in the United States. Invented in Italy by Professor Giuseppe Marineo, the computerized medical device mixes non-pain with pain messages carried through surface electrodes to c-fibers. This mechanism helps resolve pain signals to the affected area reducing the perception of neuropathic pain. Several studies have suggested this technology is effective at reducing chronic neuropathic pain with a durable effect. Usually several 30 minute treatments sessions on consecutive days are needed to allow the brain to change its perception of the pain message leading to a lasting and sometimes permanent no/low pain state. There are no known side-effects and the technique is drug free and noninvasive.

 

Physical and occupational therapy are important components of the management of CRPS primarily by desensitizing the affected body part, restoring motion, and improving function. Physical therapy interventions for CRPS can include specific modalities such as transcutaneous electrical nerve stimulation, progressive weight bearing, tactile desensitization, massage, and contrast bath therapy. These interventions tailored specifically to each individual person can be used to improve pain and function to help people return to normal activities of daily living.[58] Some people at certain stages of the disease are incapable of participating in physical therapy due to touch intolerance. This may be where Graded Motor Imagery and Mirror Therapy (see below) are particularly helpful. People with CRPS often develop guarding behaviors where they avoid using or touching the affected limb. This inactivity exacerbates the disease and perpetuates the pain cycle. Therefore optimizing the multimodal treatment is paramount to allow for use of the involved body part. Physical therapy works best for most patients, especially goal-directed therapy, where the patient begins from an initial point, regardless of how minimal, and then endeavors to increase activity each week. Therapy is directed at facilitating the patient to engage in physical therapy, movement and stimulation of the affected areas. One difficulty with the idea of Physical Therapy, however, is that it means different things to different people. There is one systematic review of the use of physical and occupational therapy for the treatment of CRPS. That review concluded: “Narrative synthesis of the results, based on effect size, found there was good to very good quality level II evidence that graded motor imagery is effective in reducing pain in adults with CRPS-1, irrespective of the outcome measure used. No evidence was found to support treatments frequently recommended in clinical guidelines, such as stress loading. CONCLUSIONS: Graded motor imagery should be used to reduce pain in adult CRPS-1 patients.”

Physical therapy has been used under light general anesthesia in an attempt to remobilize the extremity. Such remobilization is used cautiously to avoid damage to atrophied tissue and bones which have become osteodystrophic.

 

Although there is no denying the importance of a multidisciplinary approach in the management of CRPS,[60] recent research suggests that physical therapy intervention may be successful in decreasing symptoms of CRPS without the use of medications. “Pain exposure” physical therapy (PEPT) is based on the premise that pain may be exacerbated and maintained by psychosocial and behavioural factors and, therefore, these factors must be addressed as a component of CRPS management. PEPT combines a progressive loading exercise program with pain-avoidance behaviour management. Progressive loading (i.e. loading extremities beyond limit of pain) includes passive and active exercises to mobilize joints and muscle stretching and is believed to reduce sensitization (both central and peripheral) and may also restore autonomic deregulation and cortical representation in CRPS. As the name suggests, pain avoidance behaviour management attempts to reduce behaviours that maintain disuse and pain avoidance (e.g. kinesiophobia, pain avoidance and learned non-use, and pain catastrophizing), with the goal of increasing self-confidence in the individual’s physical capabilities.

 

A recent multiple single-case design study by Van de Meent et al. (2011) found PEPT to be a safe and effective method of treatment for individuals with CRPS. Results showed improvements on a variety of outcomes measures including pain intensity, kinesiophobia, muscle strength, arm/shoulder/hand disability, walking speed, and perceived health. However, although these results are promising, this is a relatively new topic of study and more research needs to be done in the area.

 

Physicians use a variety of drugs to treat CRPS, including antidepressants, anti-inflammatories such as corticosteroids and COX-inhibitors such as piroxicam, bisphosphonates, vasodilators, GABA analogs such gabapentin and pregabalin, and alpha- or beta-adrenergic-blocking compounds, and the entire pharmacy of opioids.

 

Mirror box therapy uses a mirror box, or a stand alone mirror, to create a reflection of the normal limb such that the patient thinks they are looking at the affected limb. Movement of this reflected normal limb is then performed so that it looks to the patient as though they are performing movement with the affected limb (although it will be pain free due to the fact it is a normal limb being reflected).

Mirror box therapy appears to be beneficial in early CRPS (McCabe et al., 2003b);. However, Lorimer Moseley (University of South Australia) has cautioned that the beneficial effects of mirror therapy for CRPS are still unproven.[63] Importantly, the precise neural mechanisms of action are unknown, and need to be studied using a combination of behavioral and neuroimaging approaches.

 

Because studies have shown that problems in the primary motor cortex are found in patients who suffer from CRPS, treatments have been developed that focus on normalizing motor representations in that part of the brain. One treatment, (graded motor imagery) has now been tested in three [66][67][68] randomised controlled trials and has shown to be effective at reducing pain and disability in people with chronic CRPS, or phantom limb pain after amputation or avulsion injury of the brachial plexus.

 

Graded motor imagery is a sequential process that consists of (a) laterality reconstruction, (b) motor imagery, and (c) mirror therapy.

 

Another approach to CRPS is based on a treatment called sensory discrimination training, which was used for phantom limb pain. A randomised controlled trial demonstrated a significant drop in pain after 10 days training. For CRPS, a replicated case series and a randomised repeated measures experiment [72] both demonstrated an effect of tactile discrimination training on pain, disability and sensory function, in people with CRPS of various durations. This treatment has not been tested in a randomised controlled trial.

 

Injection of a local anesthetic such as lidocaine is often the first step in treatment. Injections are repeated as needed. The results of local anesthetic injections are short lasting and the procedure is risky. However, early intervention with non-invasive management may be preferred to repeated nerve blockade. The use of topical lidocaine patches has not been shown to be of use in the treatment of CRPS-1 and -2

 

Surgical, chemical, or radiofrequency sympathectomy — interruption of the affected portion of the sympathetic nervous system — can be used as a last resort in patients with impending tissue loss, edema, recurrent infection, or ischemic necrosis. However, there is little evidence that these permanent interventions alter the pain symptoms of the affected patients and in addition to the normal risks of surgery, such as bleeding and infection, sympathectomy has several specific risks, such as adverse changes in how nerves function. However, there is some research suggesting good prognosis for patients who have responded favorably to a series of sympathetic blocks (3-6).

 

Ketamine, a dissociative anesthetic, is being used in the treatment of Complex Regional Pain Syndrome with anecdotal success. During the infusion the patient is monitored constantly, and it should be administered only by a qualified physician such as an anesthesiologist. The theory of ketamine use in CRPS/RSD is primarily advanced by neurologist Dr Robert J. Schwartzman of Drexel University College of Medicine in Philadelphia, and researchers at the University of Tübingen in Germany, but was first introduced in the United States by Doctor Ronald Harbut of Little Rock, Arkansas. The hypothesis is that ketamine blocks NMDA receptors which might reboot aberrant brain activity.

 

There are two treatment modalities; the first consist of a low-dose subanesethesia Ketamine infusion of between 10–90 mg per hour over several treatment days, this can be delivered on an outpatient basis. This is called the awake or subanesethesia technique.

 

One study[76] demonstrated that 83% of the patients that participated had complete relief and many others had some relief of the symptoms. Another evaluation of a 10-day infusion of intravenous ketamine (awake technique) in the CRPS patient concluded that “A four-hour ketamine infusion escalated from 40–80 mg over a 10-day period can result in a significant reduction of pain with increased mobility and a tendency to decreased autonomic dysregulation”. Unfortunately, these study designs are very prone to bias, which means high quality randomised controlled trials of ketamine infusion for CRPS are still needed to learn about its effects and side effects.

 

CRPS can also be treated with DMSO 50% cream a novel approach to treat CRPS is with the multimodal stepped care approach. Step by step a topical analgesic will be tried to examine its effectiveness in reducing pain. When a topical analgesic has some pain reducing effects, though not completely, another topical analgesic from a different class can be added to enhance the pain reducing effects. Usually one to four topical agents can be used simultaneously to get an optimal pain reducing effect.

 

EEG Biofeedback, various forms of psychotherapy, relaxation techniques and hypnosis are adjunctive treatments which assist coping.

 

Cortical Integrative Therapy (CIT®)—a scientific, research-based treatment designed to address brain and neurological dysfunction in both children and adults.  By adopting a multidisciplinary approach, we are changing the way in which brain-related disorders and traumatic brain injury (TBI) are treated.  Instead of managing symptoms, we identify the root cause of the problem and work to significantly reduce and/or resolve the symptoms of a disorder.Cortical Integrative Therapy (CIT®) has been successful in treating a wide range of painful and debilitating conditions including: ADD/ADHD; apraxia; ataxia; chronic pain; dystonia; dysautonomias; hypotonia; memory difficulties; movement disorders; Parkinson’s disease; Reflex Sympathetic Dystrophy (RSD)/Chronic Regional Pain Syndrome (CRPS); RLS; sciatica; traumatic brain injury; tremors; and vertigo, balance, and gait problems. In simplistic terms, CIT® stimulates the cerebral cortex through a combination of non-invasive therapies tailored to meet the specific treatment needs of each patient.  This treatment methodology stimulates brain cells to increase their size and efficiency, thereby promoting the formation of pathways which facilitate the transfer of information throughout the brain.  In the end, the affected area of the brain and overall brain function are improved without medication or surgery. The duration of treatment will vary based on the age, physical condition, and motivation of each patient; the type and stage of disorder; the kinds of medications that have been prescribed; and a host of other individual factors. more info – http://corticalintegrativetherapy.com/

 

Support Groups

www.rsdcrps.org

www.rsdsa.org

www.rsdhope.org

 

References

  • Correll, Graeme E.; Maleki, Jahangir; Gracely, Edward J.; Muir, Jesse J.; Harbut, Ronald E. (2004). “Subanesthetic Ketamine Infusion Therapy: A Retrospective Analysis of a Novel Therapeutic Approach to Complex Regional Pain Syndrome”. Pain Medicine 5 (3): 263–75.

  • Goldberg ME, Domsky R, Scaringe D, et al (2005). “Multi-day low dose ketamine infusion for the treatment of complex regional pain syndrome”. Pain Physician 8 (2): 175–9. PMID 16850072.

  • Kopsky DJ. Keppel Hesselink JM (2011). “Multimodal Stepped Care Approach Involving Topical Analgesics for Severe Intractable Neuropathic Pain in CRPS Type 1: A Case Report.”. Case Report Med 2011: 319750. doi:10.1155/2011/319750. PMC 3199095. PMID 22028723.

  • Watkins LR, Maier SF (2005). “Immune regulation of central nervous system functions: from sickness responses to pathological pain”. J. Intern. Med. 257 (2): 139–55.

  • Zuurmond WW, Langendijk PN, Bezemer PD, Brink HE, de Lange JJ, van loenen AC. (1996). “Treatment of acute reflex sympathetic dystrophy with DMSO 50% in a fatty cream.”. Acta Anaesthesiol Scand 34 (40): 364–7. PMID 8721469.

 

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