I would like to thank you in advance for taking the time to fill out this very
important survey regarding Reflex Sympathetic Dystrophy (RSD) (CRPS). This
survey will help us find some answers to the very puzzling problem we call RSD
(CRPS). All information that is collected from this survey will be placed into a
data bank. This may take sometime to finish, but I do hope within the next few
years I will be able to send you the results of this ongoing survey study.
This survey is voluntary. All information will be used in a confidential
manner and you will remain anonymous.
I would like to thank you for your time and help with this very important
project.
Sincerely,
Eric M. Phillips
President
Please mail survey to:
Eric M. Phillips
International RSD Foundation
P.O. Box 1145
Lakeville, Massachusetts 02347-1145 USA
If you have any questions or comments about this survey, please
feel free to contact me at 508-946-9888.
This survey is designed to
help us get a better understanding of how RSD (CRPS) affects each
individual and what treatments help and which do not help in the
management of Reflex Sympathetic Dystrophy.
Name (Optional):
E-Mail Address :
Age :
Sex: M F
1. How did you develop RSD?
Animal Bite
Cause unknown?
Flare up of an old injury
Electrical Injury
Injury
Minor Trauma
Surgery
Venipuncture (I.V. or I.M.
injection / needle injury)
2. When did you develop symptoms of RSD?
After Electrical Injury
After Heart Attack
After Injury
After Stroke
After Surgery
After Venipuncture (I.V. or I.M.
injection / needle injury)
3. Where do you have your RSD?
Face
Internal Organs
Left Lower Extremity
Left Upper Extremity
Right Lower Extremity
Right Upper Extremity
Total Body (All four extremities)
4. How long have you suffered from RSD?
5. What method was used to help diagnose your RSD?
Blood Test
Bone Scan
Clinical Diagnosis
Cold Stress Test
CT Scan
Doppler
EMG
MRI
Phentolamine (Regitine) Test
QSART Test
Sympathetic Nerve Block
Thermal Stress Test
Thermography ( Infrared Thermal Imaging)
X-Rays
Others (Please describe)
6. How long after injury or surgery were you diagnosed as having
RSD?
Days: Weeks:
Months:
Years:
7. Please check any of the following symptoms that you have had
along with your RSD.
Abdominal Pain
Atrophy
Back Pain
Bruising
Cardiac Disturbance
Depression
Dizziness
Discoloration of Skin
Dystonia
Facial Pain
Falling Spell
Hearing Disturbance
Headaches
Heartburn
High Grade Fever
Hot Flashes
Hyperpathia
Hypertension
Immune System Disturbance
Internal Organ Disturbance
Limited Mobility
Loss Of Sex Desire (Libido)
Low Blood Pressure
Low Grade Fever
Memory Disturbance
Menstrual Irregularity
Migraine Headaches
Mood Swings
Movement Disorder
Muscle Contractions of the Fingers or Toes
Muscle Spasm
Osteoporosis
Pelvic Pain
Rapid Hair Growth
Rapid Hair Loss
Rapid Nail Growth
Rapid Nail Loss
Rash
Severe Fatigue
Shoulder Hand Syndrome
Skin Lesion's (Skin Ulcers)
Sleep Disturbance
Stomach Ulcers
Sweating
Swelling (Edema)
Tremor
Vasoconstriction
Visual Disturbance
Weight Gain
Weight Loss
Others
8. Please check any of the following treatments listed below, that you have
tried. Please place one of the following letters (i, d, s, f
)next to your answer if your RSD symptoms increased or
decreasedyour RSD symptoms and if these treatments were
a success or failure in your
quest for pain relief. If not sure please place the letter (u)
for "Undecided" next to your selection.
Others (Please describe)
9. Please check any of the following treatments listed below,
that you have tried. Please place one of the following letters (i, d, s,
f)next to your answer if your RSD symptoms increased
or decreasedyour RSD symptoms and if these treatments
were a success or failure in
your quest for pain relief. If not sure please place the letter (u)
for "Undecided" next to your selection.
PLEASE NOTE
* (GENERIC NAME)
Others (Please describe)
11. If you are currently taking Methadone for your RSD, have you
had any of the following side effects? (If you are
not taking Methadone please skip to question 17).
Bronchopneumonia
Cardiac Dysrhythmia
Confusion Dizziness
High Toxicity Level
Narcolepsy (Tendency To Fall Asleep)
Pulmonary Edema
Respiratory Depression (Breathing Problems)
Sleep Apnea (Temporary Cessation Of Breathing During Sleep)
12. While taking Methadone have you had any blood testing done
to check the toxicity levels of the Methadone in your system?
Y N
14. How long have you been taking
Methadone?
Days:
Weeks: Months:Years:
15. How many milligrams of Methadone do you take each day?
16. Has Methadone increased or decreased your RSD pain?
17. Prior to taking Methadone did you ever take Morphine or M.S.
Contin?
Y
N
19. How many hours a night do you sleep?
20. How is your ability to concentrate on things that you feel
are important to you?
Good Moderate
Poor
21. Do you ever have a feeling of a electrical jolt in your affected
extremity?
Y
N
22. Have you had problems with your balance since developing RSD?
Y
N
23. Have you ever been told by any doctor that your RSD is in your head and
that you are crazy? Y
N
24. Has your RSD spread since the time of onset?
Y N
25. If your RSD has spread from the time of onset, please tell us how long
that it took for your RSD to spread.
Days:Weeks:Months:Years:
26. Did your RSD spread after surgery?
Y N
27. Did your RSD spread after ice application?
Y N
29. Did your RSD spread after application of cast? Y
N
31. Have you developed any type of deformity or contractures in your affected
extremity?
Y N
32. If you have developed any type of deformity or contractures, please tell
us how long it took for the deformity or contractures to start after the onset
of your RSD.
Days:Weeks:Months:Years:
33. Please check any of the following places where you have your
deformity or contractures.
Left Fingers
Left Hand
Left Wrist
Left Arm
Left Elbow
Left Shoulder
Left Toes
Left Foot
Left Ankle
Left Leg
Left Knee
Left Hip
Right Fingers
Right Hand
Right Wrist
Right Arm
Right Elbow
Right Shoulder
Right Toes
Right Foot
Right Ankle
Right Leg
Right Knee
Right Hip
34. Have you had any amputations of your affected RSD
extremities or digits?
Y N
35. If an amputation was performed, please tell us below what
extremity or digit was amputated.
37. On average, how many points (zero to 10) pain improvement
did you have after amputation? Please circle (0,
1, 2, 3, 4, 5, 6, 7, 8, 9, 10).
38. Since the time you were diagnosed with RSD, have you ever
been diagnosed with any of the following disorders:
Arthritis
Bursitis
Carpal Tunnel Syndrome
Chronic Fatigue Syndrome (CFS)
Cervical Spondylosis
Clonus
Diabetes
Dystonia
Fibromyalgia Syndrome (FMS)
Frozen Shoulder Syndrome
Lupus
Migraine Headaches
Multiple Sclerosis (MS)
Myofacial Pain Syndrome
Phantom Limb Pain (PLP)
Scleroderma
Spinal Disc Disease
Tarsal Tunnel Syndrome
Tendonitis
Thoracic Outlet Syndrome (TOS)
TMJ
Trigeminal Neuralgia
Ulnar Nerve Entrapment
Others
39. Please check any of the following, if they increase your RSD pain.
Alcohol
Chocolate
Cold
Emotions
Foods
Heat
Humidity
Stress
Others
40. Are there others in your family who also suffer from RSD? Y
N
If so, please tell us how many family members also suffer from RSD.
42. How many Spinal Cord Stimulators have you had implanted?
43. Have you had any of the following complications with your
Spinal Cord Stimulator:
Attacks of Falling
Attacks of Paralysis
Infections
Increased Pain
Jerking Movement of Extremities
Movement Disorder
Movement of Electrodes and Lead Wires
Spread of RSD
Stimulator Not Working
Tremor
Weakness of Extremities
Others
44. On average, how many points (zero to 10) pain improvement
did you have with the (SCS) Spinal Cord Stimulator?
Please circle (0, 1, 2, 3, 4, 5, 6, 7, 8, 9, 10).
46. Have you had any of the following complications with your Infusion Pump.
Increased pain
Infection
Headaches
Leakage
Pump not working
Scar formation around the pump
Spread of RSD
Swelling of extremities
Vomiting or Intolerance of pump
Others
47. Do you take pain medication by mouth in addition to morphine in the pump?
Y N
(Please describe)
48. On average, how many points (zero to 10) pain improvement did you have
with the pump?
Please circle (0, 1, 2, 3, 4, 5, 6, 7, 8, 9, 10).
49. How long did your SCS or Infusion pump work before you started to have
complications? Days:Weeks:Months:Years:
50. Have you had a Surgical or Chemical Sympathectomy? Y
N
52. Have you had any of the following complications after having the Surgical
or Chemical Sympathectomy performed?
Horner's syndrome
Increased pain
Infection Spread of RSD
Others
53. How long did your Surgical or Chemical Sympathectomy give you pain relief
before you started to have complications? Days:
Weeks: Months:
Years:
54. On average, how many points (zero to 10) pain improvement did you have
after Surgical or Chemical Sympathectomy? Please
circle (0, 1, 2, 3, 4, 5, 6, 7, 8, 9, 10).
55. Please check any of the following types of Nerve Blocks that were used to
treat your RSD.
Axillary Nerve
Block Bier Block
Brachial Plexus Block
Epidural Block
Lower Lumbar Sympathetic Nerve Block
Paravertebral Nerve Block
Stellate Ganglion Nerve Block
Others
56. How many Nerve Blocks have you had since you started your treatment for
RSD.
58. How many hours, days, weeks, or months did you have relief
after having any of the following types of nerve blocks:
Axillary Nerve Block: Hours:Days:Weeks:Months:
BierBlock: Hours:Days:Weeks:Months:
Brachial Plexus Block: Hours:Days:Weeks:Months:
Epidural Block: Hours:Days:Weeks:Months:
Lower Lumbar
Block: Hours:Days:Weeks:Months:
Paravertebral Block: Hours:Days:Weeks:Months:
Stellate Ganglion Block: Hours:Days:Weeks:Months:
59. How is your activity level after having a Nerve Block?
Excellent Good
Moderate Poor
60. Have you had any complications from having a Nerve Block?
(Please describe)
61. If your RSD developed from a Venipuncture, please check one of the
following procedures that caused your RSD. (If
this question does not pertain to you please skip to question 62)
Blood Donation
Blood Sampling
Flu Shot
Hepatitis B Injection
Intramuscular Injection
I.V. Injection ( Intravenous line)
I.V. Injection (Intravenous of medication)
Needle Injury
Tetanus Shot
Others
62. When did you experience pain from your venipuncture injury?
After Venipuncture
During Venipuncture
After Intramuscular Injection
During Intramuscular Injection
Days
Weeks
Months
Years
63. Have you had any of the following complication from your venipuncture
injury?
Bruising
Skin Lesions
Skin Rashes
Swelling
Trophic Ulcers
Others
64. Do you ever have any of the following symptoms on your skin in the RSD
affected extremity?
Bruising
Discoloration
Skin Lesions
Skin Rashes
Skin Ulcers
Others
65. Do you ever have sudden attacks of falling?
Y N
66. If you do have sudden attacks of falling, please tell us how often.
67. Please tell us below what your occupation was at the time of onset.
68. Are you still able to work?
Y N
69. How many doctors did you see before you were diagnosed with RSD?
70. If your RSD was caused by surgery , how long after surgery were you
diagnosed as having RSD? Days:
Weeks:
Months:
Years:
71. What type of doctor diagnosed your RSD?
72. Has your RSD ever gone into remission?
Y N
73. If your RSD has gone into remission, please tell us at what stage of RSD
you were in at the time of remission.
Stage I
Dysfunction (Burning pain)
Stage II Dystrophy
(Skin and nail changes and edema)
Stage III Atrophy
(Disuse)
Stage IV
(Disturbance of immune system. Lack of response to treatment)
74. If your RSD did go into remission, please tell us how long you were
in remission. Days: Weeks:
Months:
Years:
75. Please tell us below, what treatment or method helped your RSD go into
remission.
76. Has your RSD gone into remission more than once since your onset of RSD?
Y N
78. Was your RSD aggravated after the application of ice?
Y N
79. Was your RSD aggravated after the application of a cast?
Y N
80. Do you suffer from any of the following disorders other than RSD:
Bell's Palsy
Cerebral Palsy (CP)
Diamond Gardner Syndrome (Bruising)
Ehrler Danlos Syndrome
Epilepsy
Fabry's Disease
Herpes Zoster (Shingles)
Lupus
Lyme Disease
Menier's Disease
Multiple Sclerosis (MS)
Muscular Dystrophy (MD)
Parkinson
Trigeminal Neuralgia (Tic Douloureux)
Other
81. If your RSD developed from an Electrical Injury, please check one of the
following injuries that caused your RSD.
Electrical Burn
Electrical Shock
High Voltage (600-1,000 volts or higher / A.C.= Alternating Current)
Lightning Strike( D.C.= Direct Current)
Low Voltage (110 to 240 volts / A.C.= Alternating Current)
83. How long after your electrical injury were you diagnosed as having RSD?
Hours: Days:
Weeks:
Months:
Years:
84. Was your RSD caused by a chemical burn?
Y N
85. If your RSD was caused by a chemical burn, please briefly describe what
type of chemical caused the burn.
86. How long after your chemical burn were you diagnosed as having
RSD? Hours:
Days:
Weeks:
Months: Years:
87. Was your RSD caused by an infection? Y
N
88. Please describe what type of infection caused your RSD.
89. How long after developing your infection were you diagnosed as having
RSD?
Hours: Days:
Weeks:
Months:
Years:
90. Have you developed any herniated disc since you developed your RSD?
Y N
91. Please check any of the following assistive devices that you use.
Braces
Cane
Crutches
Electric Scooter
Walker
Wheelchair
92. How long have you been using these assistive devices?
Days: Weeks:
Months:
Years:
93. Has there been any one doctor or pain clinic that has had any success in
treating your RSD?
Y N
94. If your RSD was successfully treated, please list below the name and
address of your doctor or the pain clinic that treated you.
95. Would you recommend your doctor or the pain clinic that you go to for
treatment to other RSD patients? Y
N
96. Do you have a good support system with your family and friends?
Y N
97. Do you find that your family and friends have a hard time
understanding what you are going through since you developed RSD? Y
N
98. Was the Internet helpful to you during your quest to obtain information
regarding RSD?
Y N
