One of the most informative webpages I have come across in my search for information about R.S.D. and C.R.P.S. is

www.rsdhope.org

It is from the United States and has an enormous amount of information.

Unfortunately I have been unable to include an example of the content of the website as it breaches their copyright law.

If you want to know anything about R.S.D. then I recommend you visit their site.

RSDHope is a project of the American RSDHope Group, a 501 (c) (3) non profit organization
Copyright © 1997-2003 RSDHope
Last updated 6/29/2003

I have taken a bit of a liberty here and I have had inserted a copy of a downloaded slide presentation from the RSDSA which includes many informative images and charts to help you understand RSD.

Below the presentation is a copy of a letter of interest. It is for all those Who do NOT suffer from RSD.

Diagnosis and Treatment Options of RSD/CRPS

Srinivasa N. Raja, MD
Director of Pain Research
Johns Hopkins University
School of Medicine

Introduction

Reflex Sympathetic Dystrophy Syndrome (RSD), also known as Complex Regional Pain Syndrome (CRPS) is a chronic neurologic syndrome characterized by pain of varying intensity
Early diagnosis and appropriate treatment are essential to avoid disabling pain
RSD/CRPS is often under-diagnosed and under-treated by the medical community

What is CRPS

CRPS is a debilitating neurologic syndrome characterized by
Pain and hypersensitivity
Vasomotor skin changes
Functional impairment
Various degrees of trophic change
CRPS generally follows a musculoskeletal trauma

Challenges

Natural course and pathophysiology remain elusive1
Diagnosis made by exclusion of other causes2
Therapies remain controversial3
Under-diagnosed and under-treated
Significant morbidity and loss of quality of life

1. Jänig W. In: Harden , Baron Janig, eds. Complex regional Pain Syndrome, Progress in Pain Research and Management. 2001: 3-15. 2. Bogduk N. Current Opinions in Anesthesiology. 2000;14:541-546. 3. Raja SN et al. Anesthesiology. 2002;96:1254-1260.

Terminology: RSD vs CRPS

RSD = traditional term
Complex regional pain syndrome (CRPS) = more comprehensive term
Includes disorders not related to sympathetic nervous system dysfunction
CRPS I = RSD
CRPS II = causalgia (involves nerve injury)

Galer BS et al. In: Loeser, ed. Bonica’s Management of Pain. 2001: 388-411

Name Change to CRPS

For standardized, reliable diagnostic criteria and decision rules
Allow generalization
Make appropriate treatment selection
Identify reproducible research samples

Epidemiology

Common in younger adults
Mean 41.8 years
Mean age at time of injury 37.7 years
Mean duration of symptoms before pain center evaluation = 30 months
2.3 to 3 times more frequent in females than males1
Usually involves a single limb in the early stage 2

1. Raja SN et al. Anesthesiology. 2002;96:1254-1260. 2. Galer BS et al. In: Loeser, ed. Bonica’s Management of Pain. 2001, 388-411.

Clinical Features of CRPS

Presence of an initiating noxious event or a cause of immobilization
Continuing pain
Allodynia: pain from a stimulus that does not normally provoke pain
Hyperalgesia: excessive sensitivity to pain
Pain disproportionate to any inciting event

Stanton-Hicks M et al. Pain. 1995;63:127-133. Galer BS et al. In: Loeser, ed. Bonica’s Management of Pain. 2001; 388-411.

Clinical Features (cont’d)

History of edema (swelling), changes in skin blood flow, or abnormal sweating in the region of pain
Exclusion of medical conditions that would otherwise account for the degree of pain and dysfunction

Stanton-Hicks M et al. Pain. 1995;63:127-133. Galer BS et al. In: Loeser, ed. Bonica’s Management of Pain. 2001: 388-411.

Clinical Aspects of CRPS

Clinical Presentation

Pain and sensory changes disproportionate to the injury in magnitude or duration
Patients should have at least one symptom in each of these categories and one sign in 2 or more categories
Sensory (hyperesthesia = increased sensitivity to a sensory stimulation)
Vasomotor (temperature or skin abnormalities)
Sudomotor (edema or sweating abnormalities)
Motor (decreased range of movement, weakness, tremor, or neglect)

Checklist for Diagnosis: History

Skin, sensitivity to touch
Skin, sensitivity to cold
Burning pain
Abnormal swelling
Abnormal hair growth
Abnormal nail growth
Abnormal sweating
Abnormal skin color changes
Abnormal skin temperature changes
Limited movement

Checklist for Diagnosis: Examination

Mechanical allodynia
Hyperalgia to single pinprick
Summation to multiple pinprick
Cold allodynia
Abnormal swelling
Abnormal hair growth
Abnormal skin color changes
Abnormal skin temperature
Limited range of movement
Motor neglect
Bogduk N. Current Opinions in Anesthesiology. 2000;14:541-546

Differential Diagnoses

Diabetic and small-fiber peripheral neuropathies
Entrapment neuropathies
Thoracic outlet syndrome
Discogenic disease
Deep vein thrombosis
Cellulitis
Vascular insufficiency
Lymphedema
Erythromelalgia
Raja SN et al. Anesthesiology. 2002;96:1254-1260

CRPS Spreads

Patterns of spread
Contiguous spread
Gradual and significant enlargement of the affected area
Independent spread
CRPS appears in a distant, non-contiguous area
Mirror-image spread
Symptoms appear on the opposite side in an area that closely matches size and location of original
Maleki J et al. Pain. 2000;88:259-266

Spread of CRPS



A patient with both upper and lower extremity being
affected with RSD/CRPS at different time points about 2 years apart.

Goal and Strategy for Treatment



Treatment

Physiotherapy + pain management + psychological therapies = sequential progression through the rehabilitation pathway
PT + OT crucial to patient’s progression
Therapist assesses patient’s motivation and helps set goals
Adequate analgesia, encouragement, and education of disease process
Stanton-Hicks M et al. Pain Practice. 2002;2:1-16.

Rehabilitation: General Steps

Desensitization of the affected region
Mobilization, edema control, and isometric strengthening
Stress loading, isotonic strengthening, range of motion, postural normalization and aerobic conditioning
Vocational and functional rehabilitation
Stanton-Hicks M et al. Clin J Pain. 1998;14:155-166

Pharmacologic Pain Management

No “gold standard” treatment for CRPS
Effective therapy has included
Tricyclic antidepressants
IV and topical lidocaine
IV ketamine
Carbamazepine
Topical aspirin
Most drugs used for neuropathic pain are used to treat RSD/CRPS
IV alendronate (bisphosphonate)
Topic dimethyl sulfoxide
Topical clonidine
IV bretylium
IV ketanserin
IV phentolamine
Intranasal calcitonin

Minimally Invasive Intervention

Sympathetic, IV regional, and somatic nerve blocks
Patients with a sympathetic component to their pain (SMP) should receive nerve blocks
For patients without SMP, a somatic block or epidural infusion may be indicated to optimize analgesia for PT
Stanton-Hicks M et al. Pain Practice. 2002;2:1-16

More Invasive Intervention

Tunneled epidural catheters
Neuroaugmentation
Spinal cord stimulation
Intrathecal drug delivery
Stanton-Hicks M et al. Pain Practice. 2002;2:1-16.

Sympathectomy

Controversial surgical procedure
In carefully selected patients, may result in reduction in pain severity and disability
Patients with SMP who respond to selective sympathetic blockade
Alternatives
Radiofrequency
Neurolytic techniques
Stanton-Hicks M et al. Pain Practice. 2002;2:1-16.
Bandyk DF et al. J Vasc Surg. 2002;35:269-277.

Psychotherapy

Essential part of rehabilitation process includes
Cognitive behavioral therapy
Coping skills
Stress management
Relaxation techniques
Imagery
Self-hypnosis
Stanton-Hicks M et al. Pain Practice. 2002;2:1-16

Prognosis

Difficult to predict
Earlier intervention may be more likely to be successful
Some patients experience reduced symptoms or apparently full recovery
Some patients continue to experience significant disability
Raja SN et al. Anesthesiology. 2002;96:1254-1260.

Conclusions

RSD/CRPS is a chronic neurologic syndrome
Not all patients have the same set of symptoms
Early diagnosis and appropriate treatment is essential
Ideal treatment should be multidisciplinary

Bibliography


Bandyk DF, Johnson BL, Kirkpatrick AF, Novotney ML, Back MR, Schmacht DC. Surgical sympathectomy for reflex sympathetic dystrophy syndromes. J Vasc Surg. 2002;35:269-277.

Bogduk N. Complex regional pain syndrome. Current Opinions in Anesthesiology. 2000;14:541-546
.
Bruehl SP, Harden RN, Galer BS, et al. External validation of IASP diagnostic criteria for complex regional pain syndrome and proposed research diagnostic criteria. Internal Association for the Study of Pain. Pain. 1999;81:147-154.

Galer BS, Schwartz L, Allen RJ. In: Loeser, ed. Bonica’s Management of Pain. 2001: 388-411.

Harden RN, Bruehl SP, Galer BS, et al. Complex regional pain syndrome: are the IASP diagnostic criteria valid and sufficiently comprehensive? Pain. 1999;83:211-219.

Jänig W. CRPS-I and CRPS-II: A strategic view, In: Harden , Baron Jänig, eds. Complex regional Pain Syndrome, Progress in Pain Research and Management. 2001: 3-15.

Kingery WS. Pain. A critical review of controlled clinical trials for peripheral neuropathic pain and complex regional pain syndromes. 1997;73:123-139.

Maleki J, LeBel AA, Bennett GJ, Shwartzman RJ. Patterns of spread in complex regional pain syndrome, type I (reflex sympathetic dystrophy). Pain. 2000;88:259-266.

Raja SN , Grabow TS. Complex regional pain syndrome I (Reflex Sympathetic Dystrophy) Anesthesiology. 2002;96:1254-1260.

Stanton-Hicks M, Burton AW, Bruehl SP, et al. An updated interdisciplinary clinical pathway for CRPS: Report of an expert panel. Pain Practice. 2002;2:1-16.

Stanton-Hicks M, Jänig W, Hassenbusch S, et al. Reflex sympathetic dystrophy: changing concepts and taxonomy. Pain. 1995;63:127-133

Stanton-Hicks M, Baron R, Boas R, et al. Complex Regional Pain Syndrome: guidelines for therapy. Clin J Pain. 1998;14:155-166.

Letter to those who do NOT have RSD

Having RSD means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident most people do not know even a little about RSD and of those who think they do, many are actually misinformed.
In the spirit of informing those who wish to understand, these are the things I would like you to understand about me before you judge me:

-Please understand that being in pain doesn't mean that I am not still a human being. I have to spend most of my days in incredible pain and exhaustion and if you visit I probably don't seem like much fun to be with. But, I'm still me stuck inside this body. I still worry about school and work and my family and friends and most of the time I'd still like to hear you talk about yours too.

-Please understand the difference between "happy" and "healthy". when you've got the flu, you probably feel miserable with it, but I've been in pain for years. I can't be miserable all the time and, in fact, I work hard at not being miserable. So if you're talking to me and I sound happy, it means I am happy. That's it......it doesn't mean that I am not in a lot of pain, or extremely tired, or that I am getting better or any of those things. Please don't say "oh, you sound better!" I am not sounding better. I am sounding happy. If you want to comment on that, you're welcome to do so.

-Please understand that being able to stand up for 10 minutes doesn't necessarily mean that I can stand for 20 minutes or an hour. And, just because I managed to stand up for 30 minutes yesterday doesn't mean I can do the same today. With many diseases you're either paralyzed or you can move: with this one it gets more confusing.

-Please repeat the above paragraph substituting "sitting", "walking", "thinking", "being sociable" and so on.....it applies to everything.
That's what RSD does to you.

-Please understand that RSD is variable. Its quite possible (for me its common) that one day I'll be able to walk to the park and back, while the next I'll have trouble getting to the kitchen. Please don't attack me when I'm hurting by saying "but you did it before!" If you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute. If that happens, please do not take it personally.

-Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me that I need a treadmill, or that I just need to lose (or gain) weight, get this exercise machine, join this gym, or try these classes, may frustrate me to tears and is NOT correct. I am working with my doctor and physical therapist and am already doing the diet and exercise I am supposed to do. Another statement that hurts is "you just need to push yourself more, work harder..." RSD deals with nerves and circulation, and our bodies don't repair themselves the way yours do; pushing myself can do far more damage than good and could result in recovery time of days, weeks or months.

-Please understand that RSD may cause secondary depression (wouldn't you get depressed if you were hurting for months and years on end?) but it is NOT created by depression.

-Please understand that if I say I have to sit down/lie down/take pills now, I have to do it RIGHT NOW--it can't be put off or forgotten just because I am out for the day (or whatever). RSD does not forgive.

-Please understand that I don't want you to suggest a cure to me. Its not because I don't appreciate the thought and its not because I don't want to get well. Its because I have had almost every one of my friends suggest one at some point. At first, I tried them all, but then I realized I was making myself sicker, not better. If there were something that cured, or even helped, all people with RSD would know about it. This is not a drug company conspiracy; there is world wide networking (both on and off the Internet) among people with RSD, and if something worked we would KNOW. If, after reading this, you still want to suggest a cure, then do it, but please don't expect me to rush right out and try it. I'll take what you say and discuss it with my doctor.
In many ways I depend on you -- people who are not in pain. I need you to visit me when I am in too much pain to go out. Sometimes I may need you to help me with the shopping or the cooking. I may need you to take me to the doctor or the physical therapist. You're my link to the outside world.

And as much as possible, I need you to understand me.

Sincerely,
Tom Barnes (TomRSDMdSupport@aol.com)
Director
Maryland RSD & Pain Support Network
PO Box 1397
Abingdon, MD 21009