A BEGINNERS GUIDE TO REFLEX SYMPATHETIC DYSTROPHY
DESCRIPTION, FACTS AND FICTION
: ORIGIN AND OTHER NAMES
: SYMPTOMS
:
1: Constant burning pain which is often described as having a hot poker being stuck into you. The pain is known to be out of proportion for the type of injury suffered. After the injury or trauma, the sympathetic nervous system seems to react abnormally and send incorrect messages throughout the body. STAGES OF RSD
:
STAGE 1
In mild cases this stage lasts a few weeks, then subsides spontaneously or responds rapidly to treatment.
STAGE 2
Stage 2 may last from 3 to 6 months in many patients STAGE 3 DIAGNOSIS:
The International Disease Code Numbers used to diagnose RSD are: GLOSSARY OF COMMON MEDICAL TERMS
:
ABASIA - Lack of motor or muscular coordination in walking. RSD TREATMENTS MAY INCLUDE: THINGS TO REMEMBER
:
The Reflex Sympathetic Dystrophy Syndrome Association of America
RSD has changed the lives of so many people and their loved ones. Finding as much information on this disease as you can and getting as much support as possible from others who really do understand what you are going thru are extremely important in enabling all of us to deal with the pain, fear, questions, and everyday changes in our lives. I hope this webpage will help you find the information and support that you and your loved ones need. Wishing you painfree days and restful night!! - jessi-ann
Reflex Sympathetic Dystrophy is a debilitating progressive disease of the Autonomic Nervous System. It is a chronic multi-symptom condition which is often characterized by severe burning pain, pathological changes in bones and skin, swelling, diminished motor function, and extreme sensitivity to touch. It can occur in one, two, or sometimes all four extremities , and be in the face, shoulders, back, eyes and internal organs as well. RSD involves your nerves, skin, muscles, blood vessels and bones. Although it usually occurs after trauma
(minor like a sprain or major like a car accident or stroke), infections, surgery, or repetitive motion disorder, it can sometimes occur without any apparent cause.
If diagnosed quickly and treated properly, RSD can go into remission. Periods of remission can last weeks, months or even years and often will continue until an additional injury or trauma to the body causes the RSD to become active again. If treatment is delayed, RSD can spread to the entire limb or other parts of one's body and the changes in the bone and muscles can become irreversible. Unfortunately RSD remains poorly understood and often times is misdiagnosed. This is why it is extremely important for all of us to learn as much about the disease as we can and to educate others, including our family members, doctors, media etc.
During the Civil War Drs. Mitchell, Moorehouse, and Keen began documenting and studying the soldiers who's pain did not end after their wounds had healed.
In the years since then various names have been given to this condition including Causalgia, Sudecks Atrophy, Algodystrophy, Post Traumatic Pain Syndrome or Dystrophy, Shoulder Hand Syndrome, Pain - Dysfunction Syndrome, Reflex Neurovascular Dystrophy, Traumatic Vasospasm, and finally, as it is called now, Complex Regional Pain Syndrome (CRPS). CRPS type I was formerly known as RSD and CRPS type II was known as causalgia.
While not every person has all of the same symptoms, the major symptoms that most RSD'ers
have are:
2: Inflammation while not always present, presents itself as pitting or non-pitting edema.
3: Skin changes which include, but are not limited to, temperature changes, skin or tissue atrophy, increased hair and nail growth or hair and nail loss, dryness, rashes, increased sweating, and an over sensitivity to touch.
4: Spasms in the muscles and or blood vessels, tremors and dystonia.
5: Diminished motor function and the eventual development of dystrophy and/or atrophy.
6: Bone changes
7: Emotional disturbances including insomnia, depression, concentration and short term memory difficulties.
While not everyone agrees to the different stages, it is believed that RSD presents itself in three stages. Not all of the clinical features for the various stages of RSD are experienced by each patient nor does the rate of progression remain the same for each of us. Stage 1 and 2 symptoms begin to appear within a year. Some patients do not progress to Stage 3. Many of us will find that our Stage 1 and Stage 2 symptoms may fade as the disease progresses to Stage 3. Some of us also experience Stage 2 or 3 symptoms going back to the early stage with our response to individual treatments.
* Onset of severe, pain limited to the site of injury
* Increased sensitivity of skin to touch and light pressure (hyperasthesia).
* Localized edema (swelling)
* Muscle spasms
* Stiffness and limited mobility
* At onset, skin is usually warm, red and dry and then it may change to blue (cyanotic) in appearance and become cold and sweaty.
* Increased sweating (hyperhydrosis).
Average duration of Stage 1 is 3 months ( but PLEASE keep in mind that duration of stages and symptoms experienced in each stage can be different for all of us).
Early and correct treatment during this stage will often result in remission.
* Pain becomes even more severe and more diffuse
* Edema (swelling) spread and may change from a soft to hard (brawny) type
* Hair may become coarse then scant, nails may grow faster then grow slower and become brittle, cracked and heavily grooved
* Spotty wasting of bone (osteoporosis) occurs early but may become severe and diffuse
* Muscle wasting begins
* Increased thickness of the joint
* Marked wasting of tissue (atrophic) eventually become irreversible
* For many patients the pain becomes intractable and may involve the entire limb.
* Atrophy of the muscles
* Extremity may become weak, have limited motion and may become ankylosed.
* Contraction of flexor tendons may occur and subluxations can be produced.
* Bone deossification may have become marked and diffused.
* A small percentage of patients have developed generalized RSD affecting the entire body.
The diagnosis of RSD tends to be frustrating for many patients. RSD is often misdiagnosed or not diagnosed quickly enough since it remains a poorly understood disease. Many medical professionals are not familiar with RSD and the delays in diagnoses and treatment often close us out of our chance for remission. RSD is diagnosed primarily through observation of the symptoms, especially those of constant burning pain that is considered disproportionate to the injury, inflammation, spasms and movement disorder, changes in tissue ( dystrophy and atrophy), and insomnia. The diagnosis is often obtained after ruling out other possible causes for the pain and symptoms. While some changes will sometimes show on tests such as thermograms, bone scans or X-rays, these will often NOT show any signs of RSD and should not be used to rule out RSD in most cases.
337.20 - Unspecified Site
337.21 - Upper Extremity
337.22 - Lower Extremity
337.29 - Other Specified Site
(While these words are ones common to many of us, the inclusion in this list does not mean the word will refer to your individual case, nor is it a recommendation or endorsement of any procedure listed. This list is merely to help define words that many of us see in our medical reports or read in medical articles. The source of many of the following definitions is the "The New American Medical Dictionary and Health Manual" by Robert E. Rothenberg, M.D., F.A.C.S. )
ABATEMENT - A decrease in the severity or intensity of a symptom.
ABLATION - Surgical removal of a part of the body, such as amputation of a limb.
ACAMPSIA - Inability to bend or extend a joint.
ACANTHESTHSIA - A feeling of "pins and needles."
ACROAGNOSIS - Lack of sensation in an arm or leg.
ACRONESTHESIA - Loss of sensation in one or more limbs.
ACROCYANOSIS - Blueness of the hands and feet caused by a disturbance in the blood vessels
and their ability to contract and expand.
ACROEDEMA - Swelling of the arms and feet.
ACROHYPERHYDROSIS - Excessive sweating of the hands and feet.
ACROTIC PULSE - A very weak pulse.
ACTINOCYMOGRAPHY - X-raying an organ while it is in motion.
ACUPUNCTURE - Needling of deep structures in order to relieve pain.
ACUTE - Rapid; short, sudden, severe. Not Chronic.
ADRENERGIC - Referring to sympathetic nerve fibers that produce an adrenalin-like substance.
ADRENERGIC BLOCKING AGENT - A substance that blocks responses to sympathetic
nerve activities.
AFEBRILE - Without fever, usually referring to a patient who's temperature is normal.
AGLUTITION - Difficulty in swallowing.
AGONY - Extreme pain.
AKINESTHESIA - Loss of sense of movement, as in a muscle.
ALGESIC - Painful.
ALGOLOGY - The science and study of pain phenomena. An algologist is a student,investigator,
or practitioner of algology.
ALKALOID - Any one of the digitalis, etc.
ALLODYNIA - Extreme pain is produced by any stimuli that would not normally induce pain
(such as touch, pressure and warmth).
AMBULATORY - Not bedridden, able to walk by oneself.
AMBULATORY SURGERY - Surgery performed either in a special ambulatory care unit or
doctor's office. Outpatient surgery.
AMPUTATION - The surgical removal of a limb or part of a limb.
AMYOTONIA - Absence of muscle tone.
ANALGESIA - Absence of pain in response to stimulation that would normally be painful.
ANALGESIC DRUGS - Pain-relieving medications (anodynes) such as aspirin.
ANEMIA - Insufficiency of red blood cells, either of quality or quantity.
ANESTHESIA - Loss of sensation, usually produced in order to permit a painless surgical
operation.
ANESTHESIOLOGIST - A physician who specializes in the administration of anesthesia.
ANGINA PECTORIS - Pain in the chest, sometimes radiating to the left arm, caused by a spasm
of the coronary artery of the heart.
ANKYLOSIS SPONDYLITIS - An inflammatory disease of the spine, causing pain and often
leading to painful alterations of the vertebral articulations, as well as stiffness of the spine.
ANKYLOSIS - Stiffening or fixation of a joint.
ANTAGONIST - A drug which neutralizes the effect of another drug.
ANODYNE - Any medication that relieves pain.
ANTIDEPRESSANT MEDICATIONS - Those that aid in combating a mentally depressed state.
ANTI-INFLAMMATORY DRUGS - Medication which is used to reduce inflammation.
APNEA - A temporary stopping of breathing, often occurring during sleep.
ARRHYTHMIA - Lack of rhythm, applied especially to irregularities of heart beat.
ARTHRITIS - Inflammation of a joint.
ARTHROSCOPY - A procedure wherein an orthopedist looks into a joint with a specially
designed lighted hollow instrument.
ASYMPTOMATIC - Without symptoms. Usually referring to someone who previously did have
symptoms.
ATROPHY - The withering of an organ or tissues which had previously been normally developed
due to degeneration of cells. This may be due to disease, aging or malnutrition.
AUTONOMIC NERVOUS SYSTEM - The portion of the nervous system over which there are no
voluntary, conscious control, including heart beat, breathing, intestinal movements,sweating, etc.
BETA BLOCKERS - Drugs that tend to slow the heart rate and the force of heart contractions
and lower the blood pressure.
BIO FEEDBACK- Giving information to an individual, through visual or auditory means, on
the state of some of his physiological responses such as heart rate, etc.)so that
the individual can gain some voluntary control over these procedures.
BONE DEOSSIFICATION - Demineralization of bone.
BONE SCAN - A process used to check for the presence of damage or changes in the bones which
enables them to be seen long before they become visible on an ordinary X-ray. Although they
can sometimes show the presence of RSD, they do not always successfully detect it.
BRAWNY EDEMA - Thickening and dusky discoloration of edematous tissue.
CARPAL TUNNEL SYNDROME - Numbness, weakness and pain in the hand, involving
especially the index, middle and ring fingers, due to compression of the medial nerve at the wrist.
CATHETER - A hollow rubber, plastic, or glass tube for passage into a structure,for the
purpose of injecting or removing fluid or blood.
CAT SCAN - The simultaneous taking of many x-rays from many angles, thus giving
a highly defined set of pictures of an organ or organs. Also called a CT Scan or
Computerized axial tomography.
CAUDA EQUINA - The "tail" end of the spinal cord composed of the nerves which
proceed to the lower part of the trunk and lower extremities.
CAUSALGIA - A burning sensation in the palms, soles or digits, thought to be due
to irritation or disease in the nerves supplying these areas.
CENTRAL PAIN - Pain associated with a lesion of the central nervous system.
CENTRAL VENOUS CATHETER - A hollow plastic tube inserted into a vein in the arm or
neck, and pushed forward until it reaches the vena cava in the chest. It is often
used for giving medication.
CHIROPRACTOR - One who treats disease by a system of healing which employs
manipulation and specific adjustment of body structures ( such as the spine).
CHONDRITIS - Inflammation of cartilage.
CHRONIC - Lasting of long duration. Not acute.
CHRONIC FATIGUE SYNDROME - An unusual illness, of uncertain cause, that is
characterized by unexplained fatigue, weakness, muscle pain, lymph node swelling
and malaise.
CLUSTER HEADACHE - A chronic headache condition, also called migrainous neuralgia.
COMPENSATION CASE - An injury or disease incurred because of the work one performs.
CONNECTIVE TISSUE DISORDER - A group of diseases including rheumatoid arthritis, systemic lupus erythematosus, rheumatic fever, scleroderma and other, that are sometimes referred
to as rheumatic diseases. They probably do not affect solely connective tissues but the
diseases are linked in various ways and have interesting immunological features which
suggest that they may be autoimmune in origin.
CONTRACTURE - The shortening of a muscle, tendon or other structure so that it can
not be straightened or readily flexed and extended. Scar tissue often results in contractures.
COSTOCHONDRITIS - Inflammation and pain in the area where the cartilages join the breastbone.
CROHN'S DISEASE - An ulcerative condition of the small and large bowel.
CRYESTHESIA - Sensitivity to cold.
CRYMODYNIA - Pain which comes on in cold or damp weather. Common in those who suffer from
arthritis and other pain disorders.
CUBITAL - Referring to the forearm or elbow area.
CYANOTIC - Bluish color of the skin and mucous membranes, usually due to poor circulation and
insufficient oxygen in the bloodstream.
DEAFFERENTATION PAIN - Pain due to loss of sensory input into the central nervous system, as
occurs with avulsion of the brachial plexus or other types of lesions of peripheral nerves or
due to pathology of the central nervous system.
DENERVATE - To cut a nerve going to or from an organ or structure. This is sometimes done
surgically to relieve pain.
DEPRESSION - A mental state of depressed mood characterised by feelings of sadness, despair,
discouragement, inability to concentrate, insomnia, and feelings of rejection and guilt.
DIASTOLIC PRESSURE - The blood pressure level during the time the heart muscle is relaxed.
DISEASE -A disturbance in the body or function of an organ or organs.
DORSAL COLUMN STIMULATOR - Also called a Spinal Cord Stimulator, it is a specialized device,
which stimulates nerves by tiny electrical impulses via small electrical wires placed on the spinal
cord.
DORSUM - The back of an organ or body part.
DYSBASIA - Difficulty in walking.
DYSESTHESIA - An unpleasant abnormal sensation, whether spontaneous or evoked.
DYSTONIA - Impaired tone, often referring to abnormal muscle tone.
DYSTROPHY - Abnormal development, progressive changes, and degeneration that may result from
defective nutrition of tissue.
ECHOCARDIOGRAPHY - A test in which sound waves are directed at the heart. The recordings give
important information on the health of the heart muscles and heart
function.
EDEMA- Excessive accumulation of fluid in the body tissue which causes swelling.
ELECTROCARDIOGRAPHY - The recording of the electrical impulses of the heart. Such tracings
often give an accurate picture of heart abnormalities and disease. (EKG, ECG)
ELECTROENCEPHALOGRAPHY - The recording of brain waves. Such tracings often give an
accurate picture of brain disease or injury. (EEG)
ELECTROMYOGRAPH - An instrument which records the electrical impulses that pass through a
muscle as it contracts and relaxes. (EMG)
ENDOSCOPE - An instrument used to look into body cavities and openings, such as a gastroscope
used to examine the stomach.
ERYTHEMA - A patch of redness of the skin.
ETIOLOGY - The study of the cause of a specific disorder or disease.
EXACERBATION - Flare-up or relapse of a condition or disease.
FASCIA - Connective tissue located in various places throughout the body, such as beneath the skin,
in between muscles, around blood vessels or nerves, etc.
FEBRILE - Feverish; relating to an elevation in body temperature above 98.6° F.
FIBROMYALGIA - Sometimes called fibrositis, this is a common condition that is associated with
widespread aching, stiffness and fatigue, and originates in muscles and soft tissues.
FIBROSIS - Thickening and scarring of connective tissue which replaces the normal components
of a structure.
FLUOROSCOPY - X-Raying a part of the body and recording the rays on the fluorescent screen.
This is carried out in order to view various organs in motion.
FUNCTIONAL DISEASE - One associated with an upset in function rather than a change in structure,
such as migraine headaches, mucous colitis, etc.
GASTROESOPHAGEAL REFLUX DISEASE - GERD is a digestive disorder that causes acid
indigestion or heartburn by the return of acidic stomach juices, or sometimes food,
back up into the esophagus.
GANGLION CYST - A cyst of the sheath of a tendon, frequently appearing about the wrist.
GLUCOSE TOLERANCE TEST - A blood test to determine the presence of diabetes or a tendency
towards its development. It is also used to determine the presence of
hypoglycemia.
GOUT - A type of arthritis or inflammation about a joint caused by excess uric acid in the blood.
Attacks occur suddenly and are accompanied by great pain. The big toe is a frequent site.
HEMATEMESIS- Vomiting of blood.
HOLISTIC MEDICINE - That type which considers the individual as a whole, and places
responsibility for maintenance of health upon the individual himself.
HOMEOPATHY - A branch of medicine, characterized by the treatment of illness with small doses of
drugs that produce, in a healthy person, symptoms like those of the illness being treated .
HORNER'S SYNDROME -
Drooping of the eyelid, contraction of the pupil, and flushing of the face,
seen in persons who have had sympathetic nerve destruction in the neck. Symptoms are often
seen temporarily after a stellate ganglion block.
HYDROSIS - Excessive perspiration.
HYPALGESIA - Decreased sensation to pain.
HYPERALGESIA - Extreme sensitivity to pain and lowered threshold to painful stimuli. Hyperalgesia
of the skin may be manifested by great pain even on light pinching or touch. Many cases of
hyperalgesia have features of allodynia.
HYPERASTHESIA - Over-sensitivity to touch and light pressure.
HYBERBARIC CHAMBER - A specially devised room in which the oxygen content is greater than
under ordinary atmospheric conditions.
HYPERESTHESIA - Excess sensitivity, such as to touch or pinprick.
HYPERGLYCEMIA - Excessive sugar in the
blood.
HYPERHYDROSIS - Excessive sweating.
HYPERPATHIA - A painful syndrome, characterized by increased reaction to a stimulus, especially if
repetitive. Hyperpathia may occur with hyperesthesia, hyperalgesia, or dysesthesia. Faulty
identification and localization of the stimulus, delay,
radiating sensation, and after-sensation
may occur. The pain is often explosive in
character.
HYPERPIESIS - High blood pressure;
hypertension.
HYPERPNEA - Rapid and exceptionally deep
breathing.
HYPERPYREXIA - High fever.
HYPERTENSION - High blood pressure.
HYPESTHESIA - Decreased sensitivity, as lessened appreciation of the sense of pain or touch.
HYPOALGESIA - Diminished sensitivity to noxious stimulation.
HYPOESTHESIA - Diminished sensitivity to stimulation, excluding special senses.
HYPOGLYCEMIA - Too little sugar in the blood.
HYPOREFLEXIA - Diminished reflexes.
HYPOTENSION - Low blood pressure.
HYPOTHENAR - The fleshy part of the palm of the hand in the region of the ring and little fingers.
HYPOTONIA - Lessened muscle tone.
IDIOPATHIC - Of unknown cause.
IMMUNE SYSTEM- The body mechanism that protects against harmful invaders,
including
the production of antibodies.
IMPALPABLE - Not able to be felt with the hands, such as a tumor.
INDEPENDENTLY MAINTAINED PAIN - (IMP) Pain which stops reacting to methods of pain relief.
As RSD progresses, more of the pain becomes Independently Maintained which explains why
localized pain
reduction techniques (i.e. sympathetic blocks, creams etc.) no longer work. Also
called Sympathetically Independent Pain.
INDURATION - Thickening, such as might be felt around the edges of an inflamed wound.
INDWELLING CATHETER - One that is left in place for prolonged periods of time.
INFLAMMATORY RESPONSE - Irritation of the involved extremity, which may include localized
heat, swelling, redness, pain, and limited movement and occur when tissues are injured by
viruses, bacteria, trauma, chemicals, heat, cold or any other harmful stimulus.
INFLAMMATION - The reaction of tissues to injury, manifested by pain, heat, swelling, and redness.
INTRACTABLE - Incurable; impossible to control.
INTRATHECAL PUMP - A method of pain relief which uses a small pump that is surgically placed
under the skin of the abdomen to deliver morphine or other medications directly into the
intrathecal space (where fluid flows around the spinal cord). The medication is delivered through
a small tube called a catheter that is also surgically placed.
IRRITABLE BOWEL SYNDROME (IBS) - One in which there are intermittent periods of abdominal
cramps and diarrhea.
ISCHEMIA - Lack of blood
supply to an organ or part due to a spasm or shutting down of the
artery which supplies it.
LANCINATING PAIN - A shooting, knife-like, sudden, severe pain.
LIGHTENING PAINS - Severe, sharp pains caused by nerve irritation.
LUPUS ERYTHEMATOSUS - An acute or chronic disease of the skin, evident mostly on the face
and hands. The face rash is red, scaly, blotchy and often extends across the nose to the cheeks
in a "butterfly" formation.
LYME DISEASE - A condition thought to be transmitted through the bite of a tick, characterized
by a ring-shaped rash surrounding the bite area, fever, and attacks of pain and stiffness that
resembles arthritis.
MAGNETIC RESONANCE IMAGINING (MRI) - A technique for viewing internal organs and bones;
and for creating many of the images formerly revealed
only by
X-rays. MRI's use no radioactive rays.
MALAISE - A feeling of being ill or unwell.
MELAGIA - Pain in the arms
or legs.MIGRAINE - Severe headache often associated with spots
before the eyes, nausea and
vomiting. The attacks tend to come on suddenly and are recurrent.
MINIMALLY INVASIVE SURGERY - Operations performed through an endoscope or
laparoscope,
utilizing the smallest incisions, some no more than approximately two-thirds of an inch
in diameter.
MULTIPLE SCLEROSIS - A chronic disease of the nervous system leading to partial paralysis,
changes in speech, inability to walk, etc.
MUSCLE RELAXANTS - group of drugs that subdue of reduce the intensity of muscle spasms
and thus tend to relieve the pain accompanying the spasms.
MYALGIA - Pain in muscles, as in lumbago, rheumatism, etc.
MYELOGRAM - A diagnostic procedure where a radiopaque contrast dye is injected into the
spinal canal. X-rays are then performed which reveal the anatomy of the spinal canal. Can be
used to diagnosis disk disease, spinal stenosis and tumors of the spinal canal. MRI and CT
scanning have largely displaced the use of this more invasive test.
MYOCLONUS -Abnormal muscle twitchings.
MYOFASCIAL PAIN SYNDROME - Muscular pain in numerous body regions that can
be reproduced
by pressure on trigger points, localized hardenings in skeletal muscle tissue. Pain is referred to
a location distant from the trigger points.
MYOFASCITIS - Inflammation of muscle and the fibrous coverings of muscle and
surrounding
ligaments. Seen as one of the common causes of chronic lower back pain.
MYOFIBROSIS - Replacement of muscle tissue by fibrous tissue, often the result of long-standing
inflammation of a muscle.
MYOMALACIA - Degeneration of muscle.
MYOSITIS - Inflammation of muscle.
MYOTONIA - Spasm of muscle.
NATUROPATH - A non-medical practitioner who tries
to cure or treat illness by giving "natural"
remedies derived from such things as
foods, herbs, water, etc.
NERVE BLOCK - The injection
of an anesthetic agent into or around a nerve in order to blot
out impulses which travel through it and to produce loss of sensation to the area supplied by
the nerve.
NEURALGIA - Pain along the route of a nerve.
NEURITIS- An inflammatory or degenerative condition of a nerve.
NEUROLOGIST - A physician who specializes in diseases of the nervous system.
NEUROPATHIC PAIN - Any pain
syndrome originating in peripheral nerves and nerve roots.
The pain is due to neurovascular damage such as diabetic neuropathy or sympathetically
maintained pain (SMP).
NEUROPATHY - Any disease of nerve tissues.
NEUROVASCULAR - A term that pertains to both the neurologic and vascular
structures.
OCCUPATIONAL THERAPY - Education and retraining for an injured or handicapped person.
ORTHOPEDIST - A Physician who specializes in diseases and conditions of the bones, joints,
muscles, tendon, ligaments, and cartilage.
OSTEOARTHRITIS - A form of arthritis associated with bone and cartilage degeneration; seen
mostly in aging people.
OSTEOCHONDRITIS - Inflammation of a bone and cartilage.
OSTEODYNIA - Pain in a bone.
OSTEOPATHIC PHYSICIAN - One who uses the ordinary medical diagnostic and treatment
measures, plus manipulative procedures which emphasize diseases of the bones.
OSTEOPORSIS - A loss in bony substances producing brittleness and softness of bones; often
seen in aging people or those with debility (weakness).
PAIN - An unpleasant sensory and emotional experience most often associated with tissue damage.
PAIN KILLER - A substance
such as a medication or herb) used to relieve pain.
PAIN THRESHOLD - The point at which one feels pain. A person with a low
pain threshold feels pain sooner than one with a high threshold.
PAIN TOLERANCE LEVEL
- The greatest level of pain that a subject is prepared totolerate. Because
the pain tolerance level is the subjective experience of the individual, the same considerations
limit the clinical value of pain tolerance level as pain threshold.
PALLIATIVE - A medication given to relieve, not to cure; or a form of treatment directed toward
relief rather than a cure applied when true cure is not possible.
PALMAR SURFACE - The palm or grasping side of the hand.
PARASYMPATHETIC NERVOUS SYSTEM - The involuntary or autonomic nervous system which
supplies nerves to the eyes, glands, heart, lungs, abdominal organs, etc.
PARESTHESIA
- A burning, tingling sensation often felt in neuritis.
PAROXYSMAL DYSESTHESIA - Spontaneous sharp jabs of pain in the affected region that seem
to come from nowhere.
PERIPHERAL NERVE STIMULATION
- Works in a similar way to the Spinal Cord Stimulation, but
the lead is placed on the specific nerve that is causing pain rather than near the spinal cord.
PERIPHERY - The part of the body away from the center.
PILOMOTOR CHANGES - Changes in the amount of goose bumps due to chilling effect on skin.
PHYSIATRICS - Physical medicine, including physical therapy and
rehabilitation techniques.
Physiatrists specialize in restoring optimal function to people with injuries to the muscles,
bones, tissues, and nervous system (such as stroke victims).
PHYSICAL THERAPY - Treatments with manipulation, exercises, message, heat, cold, stimulators,
etc. used to assist recovery and movement of limb after injury or surgery.
POLYARTHRITIS - Inflammation of several joints.
POLYMYOSITIS - Inflammation of several groups of muscles.
POST-TRAUMATIC SYNDROME - Multiple symptoms including headache, dizziness, weakness,
blurred vision, muscle aches and pains, occurring and persisting after an injury has
apparently healed.
PSYCHIATRIST - A physician who specializes in disorders of the mind.
PSYCHOLOGIST - A specialist, not necessarily a physician, who studies the function of the mind.
RADICULAR - Referring to the nerves originating in the spine.
RADICULITIS- Inflammation of the root of a nerve, particularly of a nerve going to the spinal cord.
It is accompanied by excruciating pain along the course of the nerve.
RADICULOPATHY
- Disease of the spinal nerves.
RADIOLOGIST
- A physician who specializes in the use of X-rays and radioactive substances,
both for diagnostic and for treatment purposes.
RAYNAUD'S DISEASE
- A disease in which there is chronic constriction and spasm of the
blood vessels and digital arteries in the fingers, toes, tip of nose, etc. causing pallor (blanching).
It can occasionally lead to gangrene of the affected area.
REBOUND REACTION - A flare-up of symptoms when medication is abruptly terminated.
REFERRED PAIN - Pain which is felt some distance from the site of it's origin.
REFLEX - An uncontrollable (involuntary) response to a particular stimulation.
REFLUX- Flowing in a backward direction, as the flowing of
the intestinal contents back to the stomach.
REMISSION
- A clearing up of a disease or it's symptoms.
RESPIRATORY RATE - The number of breaths per minute. The normal adult inhales approximately
twenty times per minute.
RHEUMATOLOGIST - A specialist in diseases involving the joints, particularly arthritic conditions.
RHIZOTOMY - Surgery to cut the roots of spinal nerves, carried out to relieve incurable pain.
ROMBERG- Inability to keep one's balance when standing with eyes closed.
SALICYLATE DRUGS - Medications particularly useful in relieving pains in muscles and joints.
SCIATICA - A condition in which there is severe pain in the lower back and down the back of
the thigh and leg along the route traveled by the sciatic nerve. It is associated with an
inflammation of the sciatic nerve and may lead to numbness, tingling, and wasting of
the muscles supplied by the sciatic nerve.
SCLEROSING TENOSYNOVITIS - An inflammation and overgrowth of a tendon sheath causing
intense pain, most often seen in the wrist near the base of the thumb.
SEROTONIN - A chemical found in the blood which causes blood vessels to constrict and contract.
SHORT TERM MEMORY - The ability to remember recent events.
SHOULDER-HAND SYNDROME - Pain, stiffness and numbness, leading to shrinking of the muscles;
all in the shoulder, arm and hand. Thought to be brought on by the lack of proper function of
the nerves supplying this area of the body.
SPASM - An abrupt and forceful contraction of a muscle usually associated with marked pain
or discomfort.
SPINAL CORD STIMULATION - (SCS) A method of pain relief which uses a small neurostimulation
system that is surgically placed under the skin to send mild electrical impulses to the spinal cord.
The electrical impulses are delivered through a lead (a special medical wire) that is also surgically
placed. These electrical impulses block the signal of pain from reaching the brain.
STIMULUS - Something which stimulates (arouses action) in the muscles, nerves or other
excitable tissue and results in a specific reaction.
SUBCUTANEOUS - Underneath the skin.
SUBLUXATION - A slight dislocation of a bone or joint.
SUDECK'S ATROPHY - Degeneration of bone following an injury.
SUDOMOTOR CHANGES - Increased or decreased sweating.
SYMPATHECTOMY- Removal of some of the sympathetic nerves.
SYMPATHETICALLY MAINTAINED PAIN - (SMP) pain is very responsive to local pain reduction
efforts, especially notably sympathetic nerve blocks. Most of our pain in the early stages of
RSD is Sympathetically Maintained Pain .
SYMPATHETIC NERVOUS SYSTEM- The involuntary part of the nervous system, such as that
which controls blood vessel contractions, sweating, etc.
SYNCOPE - Fainting.
SYNDROME- A group of symptoms and signs which, when appearing simultaneously, form a
definite pattern of a specific condition, disease or abnormality.
SYSTOLIC BLOOD PRESSURE - The force with which blood is pumped when the heart muscle
is contracting.
TELAGIA - Pain radiating to another part of the body; referred pain.
TEMPOROMANDIBULAR JOINT- The junction of the lower jawbone (the mandible) and the
temporal bone, located just in front of the ear.
TENDER POINTS- Areas on the body which hurt where pressed, but do not refer pain elsewhere.
They usually occur in pairs on various parts of the body, therefore usually equally distributing
the pain on both sides of the body.
THENAR REGION - The palm of the hand, especially that region located adjacent to the base of
the thumb.
THERMOGRAPHY - A technique for measuring the heat given off by a particular organ or region of
the body. A thermogram is extremely sensitive and records small temperature changes. While
these will show RSD in many cases, a negative result does not mean the patient does not
have RSD.
THORACIC - Referring to the chest.
THORACIC OUTLET SYNDROME - Condition due to compromise of blood vessels or nerve fibers
between the armpit (axilla) and base of the neck.
TRANS ESCHEMIC ATTACKS - (TIA) A temporary paralysis, numbness, speech difficulty or other
neurologic symptoms that start suddenly and recovers within 24 hours and is caused when the
nerves clamp down on the veins and restrict the blood flow to the heart, brain and
other organs.
TRIGGER FINGER - A dislocation of a tendon so that the flexion or extension of a finger is
temporarily halted.
TRIGGER POINT - A hypersensitive area or site in muscle or connective tissue, usually associated
with myofascial pain syndrome. When touched
or pressed they bring on a painful response
and referred pain. They can also be felt as painful lumps of hardened fascia.
TROPIC - Resulting from interruption of nerve supply.
ULNAR NERVE -A major nerve of the upper extremity. In humans, the fibers of the ulnar nerve
originate in the lower cervical and upper thoracic
spinal cord (usually c7 to t1), travel via
the medial cord of the brachial plexus, and supply sensory and motor innervations to parts of the
hand and forearm.
ULTRASOUND - A type of imaging technique which uses high-frequency sound waves.
VALGUS - The turning out of the foot.
VASCULAR SYSTEM - Blood vessel system.
VASOCONSTRICTION - The narrowing and contraction of blood vessels.
VASODILITATION - The enlargement or dilation of blood vessels.
VASOMOTOR MECHANISM - That which regulates the contraction or dilation of blood vessels.
Vasomotor changes may produce a sensation of
coolness or warmth.
VASOSPASM - Marked contraction and narrowing of a blood vessel or a segment of a blood vessel.
VERTIGO - Dizziness, especially the feeling that one's surroundings are whirling.
VOLAR - Pertaining to the palm or sole surfaces.
Talk to ten different RSD patients about one treatment and you will get ten different views. Unfortunately, as stated earlier, RSD is a difficult disease to diagnose and treat. The course works for one patient will not work for another. What helps one will make another worse. What helps us the first time we try it does nothing for us the next time. These are the difficulties and frustrations facing all those who suffer from RSD and a large part of the reason why doctors do not want to treat us. Doctors tend to want to treat those they know they can
help. Many of us go from doctor to doctor until we find one who actually knows about RSD!
The most important thing to remember when deciding upon a treatment is to be well educated. Speak to others who have tried the same process before you and find out not only the good but the bad. Remember, that while many will have strong opinions against something that did not work for them or strong opinions for something that helped them, we are all different and the results you get may or may not be the same.
It is also very important for you to want to try any treatments offered to you before you do so. Never agree to any thing you are not comfortable with and remember that WC, SSD, and insurance benefits can NOT be withheld from you simply because you did not agree with the treatment plan offered to you. RSD might have taken alot away from us, but it is still our bodies and we have a say in what we will or will not allow to be done to us in the name of medicine!!
The goals in your treatment plans should be to minimize pain and encourage more use of the limb. There are many different ways to try to meet these goals but it is important to remember that you must keep trying to find something that will help you, no matter how long it might take. Unfortunately, the extreme pain and change in life style is so discouraging that many of us lose the strength to keep fighting until we find something that helps us.
*MEDICATIONS - generally prescribed according to the different characteristics of one's pain. These include pain from inflammation or injury, constant burning pain, sharp sudden or jabbing pains, muscle spasms, pain causing disturbed sleep, etc.
*NERVE BLOCKS - Including but not limited to Stellate Ganglion Blocks, Beir Blocks, Lumbar and Cervical Blocks
*PHYSICAL/OCCUPATIONAL THERAPY - but keep in mind that we must know our limits. "No Pain - No Gain" does NOT apply in RSD!!! Also do NOT allow ice to be sued on you during treatments as for most of us, it will make your RSD symptoms worse!!
*IMPLANTABLE DEVICES - such as the Spinal Cord Stimulator or Intrathecal Pump
*SYMPATHECTOMIES - Although controversial, there are patients who have gotten good results from these. They should be done only if the patients has SMP (A patient is said to have sympathetically maintained pain if there is a significant decrease in pain following a sympathetic block)
*RELAXATION TECHNIQUES - Including bio-feedback, guided imagery, etc.
*CHANGE IN DIET - Including elimination of foods believed to increase pain, such as sugars, processed foods, fried foods, alcohol, etc.
*PSYCHIATRIC CARE - It is so important for all of us to learn to deal with the changes in our lives brought about by RSD and to learn to cope with the constant chronic pain, insomnia, and regrets for what we have lost.
REMEMBER- Depression does NOT cause RSD!!! RSD causes depression!!! It is important and healthy for us all to admit these feelings.
For many of us, one of the hardest things to adjust to is never knowing how much pain the day will bring. We can wake up feeling (and looking) fine but within a matter of hours find ourselves bedridden once again. Or we feel well enough to do some things one day (household chores, running errands, or even going out to socialize with friends or family) and as a result of having a "good" day, we are bedridden in pain for the next 2-4. The little chores which used to take us a short time to complete now take endless tiring hours as we often have to stop for breaks before we are done.
Our activities play a huge part on how we feel and we must learn to make changes in our lifestyles to accommodate this. We need to learn to avoid activities which make our pain flair, We need to learn to set our daily priorities, set realistic goals, and most importantly learn to pace ourselves and rest when needed.
We also need to take into consideration the outside forces which will affect the way we feel including noise, crowds, weather and barometric changes, temperature changes, etc.
As hard as it is, we must try to find new interests and hobbies which enable us enjoyment without taking too much of a toll on us. We need to try to keep as active, mentally as well as physically as we can.
Once you get your diagnosis, the next step is understanding what you have and what it means in regards to the life you once knew and the changes you now will be facing!! You MUST take responsibility in learning about this disease, making informed decisions about your care, getting copies of all your doctor reports to keep in your own files, and seeking the best medical care for yourself that you can.
Many of us deal with Worker's Comp, SSD, or other insurance companies who prey on our vulnerability and who think we will give in to their suggestions and decisions without a fight. You MUST learn to speak up for yourself and NEVER give up until you get the care you desire and the medical care you deserve.
Many of us see numerous doctors before we get a diagnosis or find a doctor who really does understand RSD and seems honestly eager to help us. NEVER hesitate to get a second opinion, even if you like your own doctor, if you feel you are not responding well to treatment or if you are uncomfortable with a treatment plan being offered to you. Talk to others who have undergone the same process or procedure and learn about both those it helped and those it hurt.
An important step to start taking right from the beginning (especially if you are dealing with WC, SSD, or other insurance) is to get a copy of ALL your doctor reports and records as soon as they are ready. Always check all your records for accuracy. Make sure your doctor documents not just how you say you feel at each appointment, but documents skin tone, limb temperature, swelling, rashes, etc. It is also a good idea to take pictures of your limb when they swell more than usual, turn purple or other pretty colors, break out in a rash, etc. Remember, we can look horrid one day but fine the next so our doctors do not always see us at our worse!!
You need to learn to make the changes in your life that will make living with a disability easier. You need to somehow learn to accept the pain and know that it will be there all the time and learn to adjust your life style around it. You need to learn to find new ways to tend to tasks that you now find too painful, learn where to get help from the government or outside organizations if you qualify, and learn to set your priorities so that you do not over do it on a good day.
You need to accept the fact that family and friends will start to shy away from you as they can not understand nor accept you always being in pain or your new limitations. You need to find friendship and support from those who suffer too and understand so that you NEVER feel alone.
If you have access to the internet, you will find tons of information available to you. You can find information on the disease itself, as well as treatments, coping suggestions, and even sites that offer adaptations that make doing certain tasks easier ( opening jars, tying shoes, driving ar car, etc). If you do not have access to the internet, check with your local hospital or other local health organizations and agencies nearby to find a support group or information in your area. If your area doesn't have an RSD support group, perhaps they have one for Chronic Pain, Fibromyalgia, or another pain condition instead. While some of the symptoms might be different, pain is pain and others in pain can offer us all the support and understanding we all need.
1. RSD DOES SPREAD!!!
2. RSD IS NOT RARE!!!
3. RSD WILL NOT BURN ITSELF OUT!!!
4. RSD CAN BE CAUSED BY EVEN A MINOR INJURY!!!
5.
ANYONE CAN GET RSD!!!
6. RSD CAN RETURN AFTER YOU ARE IN REMISSION!!
7. AGGRESSIVE PHYSICAL THERAPY OR ACTIVITY IS NOT IN YOUR BEST INTEREST!!
8. TREATMENT IS NOT THE SAME FOR EACH PATIENT!!
9. YOU CAN HAVE RSD EVEN WITH A NEGATIVE BONE SCAN!!
10. ICE SHOULD NOT BE USED AT ANY TIME!!
11. YOU CAN HAVE RSD EVEN IF YOU DON'T LOOK SICK!!
12. FRIENDS AND FAMILY HAVE A HARD TIME UNDERSTANDING OUR PAIN!!
13. YOU CAN'T BE FORCED TO UNDERGO ANY FORM OF TREATMENT YOU DO NOT WANT!!!
14. THERE IS HOPE!!! LIFE MIGHT NOT BE WHAT IT USED TO BE FOR US BUT WE CAN STILL
ENJOY IT IN OTHER WAYS!!!
With our help RSD can become a household word!!! It is up to us to educate our doctors, hospitals, schools, house of worship, family, friends, loved ones and communities and to get the word out wherever we can about RSD. Those of you who have access to the internet are encouraged to visit my website and participate in the RSD Media Awareness Campaign as well as support all the groups working on educating our government. All of us can write to our local newspapers and TV stations and ask them to help tell our stories and teach the public about RSD. TOGETHER WE WILL BE HEARD!!!!
It is so very important for any one who suffers in pain to find others who they can speak to who understands what they are feeling and going thru!!! It is just as important for our loved ones who silently watch us suffer to find support and information too. My group, as well as many others online, offer support, information, friendship and laughter to RSD'ers and their loved ones.
I offer a free daily digest, message boards, chat rooms, an RSD Awareness Campaign, and much, much more. I offer support not just for the patient but for the family and loved ones as well. I have started an RSD Database and am not able to not just introduce you to others online but pride myself in helping many RSD'ers find others near where they live to meet in person for support and friendship too.
I am also proud to say my link list is the largest online list of helpful and informative links for RSD'ers currently on the web. It is updated whenever possible. You will find information on RSD, medications, finding doctors, alternative medications and treatments, other health conditions, Workers Comp and Social Security Disability, information on many other online RSD support groups, as well as RSD'ers personal homepages, and MUCH MORE!!! Please visit my homepage and then contact me and let me know what I can do to help you!
REMEMBER, WE ARE ALL IN THIS TOGETHER!!!
PAIN PALS RSD SUPPORT
jessi-ann Rosenbaum
www.angelfire.com/me2/rsdpainpals/WELCOME.html
froggys_rsd_support@verizon.net
116 Haddon Avenue
Suite D
Haddonfield, New Jersey 08033
(856) 795-8845
www.rsds.org
The information in this booklet is to guide you and your loved
ones as you research RSD and the best treatment, doctors, medication, etc
for YOU. Unfortunately, with RSD, what works for one of us will not work
for another. There are no magic cures or known solutions. We can only keep
learning and hope for the best!! None of the information in this booklet
should be used to diagnose or treat any one. Remember, follow up with your
personal physician at all times and do not replace any medical treatments
with anything you find here until you discuss it with your own doctor.
Please remember, I am NOT a doctor NOR have I had any medical training. I
am just another person who suffers from this disease and who wants to help
others by providing as much information, support, and friendship as I can.
Remember - WE ARE ALL IN THIS TOGETHER!!!
Wishing you painfree days and
restful nights- jessi-ann .
And then, be sure to read my hints on how to survive life with RSD,
AN RSD'ERS GUIDE TO LIFE!!
