On-line RSD Survey

International Reflex Sympathetic Dystrophy Foundation©

Dear Friends:

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. All returned information will be confidential.

I would like to thank you for your time and help with this very important project.

Sincerely,
Eric M. Phillips
President
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. You can also fax or e-mail me your questions or comments to the following:
Fax: 508-946-3338
EricmP9512@AOL.com
Utopia33@Prodigy.net

*Please Note: If you have a problem filling out this survey form please go to the link for the "Printable RSD Survey", and you will be able to print out this same RSD Survey. After you print it out, please fill out the form and return it to me by snail mail to the address above. Thank you. :-)

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)

(Please tell us how you developed your RSD)

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?

Days: Weeks: Months: Years:

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 select one of the following answers if these treatments increased or decreased your RSD symptoms and if these treatments were a success or failure in your quest for pain relief. If not sure select "Undecided".

Acupuncture

Amputation

Application of Heat

Application of Ice

Arthroscopy

Bio-Feed Back

Carpal Tunnel Surgery

Chemical Sympathectomy

Chiropractor

Cingulotomy

Cordotomy

Cryosurgery

Disc Surgery

Exploration

Fusion Surgery

Homeopathy

Hydrotherapy

Hypnosis Therapy

Infusion Pump

I.V. Mannitol

Ketamine Treatment

Knee Surgery

Laser Surgery

Magnet Therapy

Micro Surgery

Nerve Graft

Neurectomy

Occupational Therapy (O.T.)

Phentolamine Test

Physical Therapy (P.T.)

Psychotherapy

Radiofrequency Treatment

Removal of Neuroma

Rhizotomy

Rib Resection

Rotator Cuff Surgery

Spinal Cord Stimulator

Sympathectomy (Surgical)

Sympathetic Nerve Block

Tarsal Tunnel Surgery

Tendon Release

TENS Unit Treatment

Ulnar Nerve Release

Ultrasound

Others (Please describe)

9. Please check any of the following medications listed below, that you have taken to help treat your RSD. Please select one of the following answers if these medications increased or decreased your RSD symptoms and if these medications were a success or failure in your treatment of RSD. If not sure select "Undecided". PLEASE NOTE * (GENERIC NAME)

Ativan (Lorazepam*)

Baclofen (Lioresol*)

Buprenorphine (Buprenex*)

Butorfranol (Stadol*)

Calan or Isoptin (Verapamil*)

Catapres (Clonidine) (Oral or Patch*)

Dalmane (Flurazepam*)

Demerol (Meperidine*)

Desyrel (Trazodone*)

Dibenzyline (Phenoxybenzamine*)

Dilantin (Phenytoin*)

Dilaulid (Hydro Morphone)

Elavil (Amitriptyline*)

Flexeril (Cyclobenzaprine*)

Halcion (Triazolam*)

Haldol (Haloperidol*)

Hytrin (Terazocin *)

Inderal (Propranolol *)

Klonopin (Clonazepam*)

Lodine (Etodolac*)

Lidoderm (Lidocaine Patch 5%*)

Lortab

Methadone

Mexitil (Mexiletine*)

Minipress (Prazosin*)

Morphine

MS Contin (Morphine Sulfate)

Naprosyn (Naproxen*)

Neurontin ( Gabapentin*)

Noropramin(Desipramine*)

Nubain

Pamelor (Nortriptyline*)

Paxil (Paroxetine*)

Percocet

Percodan

Procardia (Nifedipine*)

Prozac(Fluoxetine Hydrochloride*)

Relafen (Nabumetone*)

Restoril (Temazepam*)

Soma (Carisoprodol*)

Talacen

Tegretol (Carbamazepine*)

Tofranil (Imipramine*)

Tranxene (Clorazepate Dipotassium*)

Ultracet (Tramadol HCI*)

Ultram (Tramadol Hydrochloride*)

Valium (Diazepam*)

Vicodin

Xanax (Alprazolam*)

Zanaflex

Zoloft (Sertraline Hydrochloride

Zonalon Cream

Zostrix (Capsaicin*)

Others (Please describe)

10. Please list below the names and amount of the medications that you are currently taking.

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

13. Please tell us what other medications you are currently taking along with Methadone. (Please describe)

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? Increased Decreased

17. Prior to taking Methadone did you ever take Morphine or M.S. Contin? Y N

18. Since you developed RSD have your sleep patterns changed? Y N If , so do you sleep more or less now since you developed RSD?

It may be necessary to hold your Ctrl key down while clicking with your mouse to select multiple options.

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

28. If your RSD did spread from surgery, please describe below what type of surgery you had.

29. Did your RSD spread after application of cast? Y N

30. At the time of onset was the skin temperature in your affected extremity hot or cold?

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.

36. If an amputation was performed, please tell us below if it increased or decreased your RSD pain.

37. On average, how many points (zero to 10) pain improvement did you have after amputation?

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.

41. If you have had a Spinal Cord Stimulator implanted, please tell us if the SCS has increased or decreased your RSD pain.

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?

45. If you have had an Infusion or Morphine Pump implanted, please tell us below if the pump has increased or decreased your RSD pain.

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?

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

51. If a Surgical or Chemical Sympathectomy was performed did it increase or decrease your RSD pain.

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?

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.

57. Please tell us if your pain increased or decreases after having any of the above mentioned nerve blocks.

It may be necessary to hold your Ctrl key down while clicking with your mouse to select multiple options.

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:

Bier Block: 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:

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

77. What helps you more heat or cold or both?

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)

82. Was your electrical injury an industrial or household injury? (Please briefly describe below what happen during your electrical injury.)

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

99. What State or Country do you live in?

100. Do you belong to an RSD Support Group? Y N

The material on the Neurological Associates Pain Management Center Homepage and all it's associated, linked or reference pages is for informational and education purposes. It is not meant to take the place of your physician. Before starting, changing, or stopping any treatments or medicines consult your physician. H. Hooshmand, M.D., Neurological Associates Pain Management Center and Associates will not be held liable for any damage or loss as a result of information provided on this page or associated documentation. Again, this WEB SITE is simply published as an information source and should not be used to treat or make judgments on RSD/CRPS. All associated material on this web site may not be copied, reproduced or quoted without expressed written permission from the owner; Copyright © 1999-2012 H. Hooshmand, M.D.

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