RSD CANADA Online Survey Questionnaire

DEAR FRIEND,

This survey will be of BENEFIT TO YOU and others suffering with CRPS/RSD. We are interested in what YOU think.
Be candid and opinionated if you wish. All surveys will be read.

Please complete this survey if:


PAPER SURVEY:

If you wish to complete this survey and you do not have a computer, please supply us with your mailing address and we will send one out to you.

E-mail: rsd@rsdcanada.org or write to:

RSD CANADA SURVEY
c/o PO BOX 21026,
St. Catharines, Ontario
Canada L2M 7X2


WHY?

To our knowledge, this is the first survey in Canada on Complex Regional Pain Syndrome (Reflex Sympathetic Dystrophy). We are gathering important information on CRPS/RSD in order to gain more knowledge about how it affects those in Canada. We intend to present the results to government agencies in order to obtain assistance in the treatment of CRPS/RSD in Canada. (Details on the last page.) Feel free to express your opinions in the spaces provided. We thank you for your cooperation.

All answers will be kept confidential.

REMEMBER: You may only be one voice but

TOGETHER WE ARE MANY VOICES AND WE WILL BE HEARD

PERSONAL INFORMATION

  1. Are you Canadian, American, Other?
     
  2. EMail:

    Male Female

    Age: years
     
  3. Was there a specific event that led to you developing RSD?
     
  4. If yes, was it after:

    • injury (e.g. sprained ankle, fracture, joint injuries)
    • surgery
    • medical condition (e.g. neck disease, back disorder, stroke, heart attack, cancer)
    • other (e.g. medical procedure, unknown cause)
  5. When did the specific event occur? DAY MONTH YEAR
     
  6. When did you first notice the symptoms of CRPS/RSD? DAY MONTH YEAR
     
  7. When were you first diagnosed with CRPS/RSD? DAY MONTH YEAR


SYMPTOMS

  1. What were the initial symptoms that you noticed in the affected area? (Check all that apply)

    pain swelling
    felt warm felt cold
    change in colour increased sweating
    decreased sweating difficult to move
    decreased sensations (touch, pressure, temperature) increased sensitivity (pain on rubbing or touching)
    other
  2. Did your symptoms of CRPS/RSD go away completely (remission) and appear again? If yes, how many times?
     
  3. Where did your CRPS/RSD first begin? Please be specific. (e.g. left ankle, right thigh, etc.)
     
  4. After the CRPS/RSD appeared, has it spread or surfaced in another site?
    If yes, please identify areas of spread. (e.g. left ankle, right thigh, etc.)
     
  5. How soon after your diagnosis was any treatment started? WEEKS MONTHS YEARS
     
  6. Please comments on the nature of your CRPS/RSD today.

    1. Nature: burning aching stabbing
    2. Timing: continuous intermittent
    3. Rate your pain by selecting a number: (0 being no pain and 10 being the maximum pain)
    4. pain worsened by:
    5. pain relieved by:
  7. Do you have any swelling in the affected area(s)?
     
  8. Does the affected part(s) change colour at any time? If yes, what colour:
     
  9. Do hair or nails in the affected part look normal? If no, describe changes:
     
  10. Do you sense touch and temperature the same way as before?
     
  11. Does touching or rubbing the affected part(s) produce pain?
     
  12. Did sweating at the affected part(s) change?
     
  13. Do you suffer from any of the following? (Check all that apply)

    memory loss insomnia
    depression agitation
    mood swings irritability
    headaches increased sensitivity to sound
    increased sensitivity to light  
    other:  


TREATMENTS

  1. What treatments did you undergo? (Check all that apply)

    medications nerve blocks
    physical therapy surgical procedures
    spinal cord stimulator inthrathecal pumps
    psychotherapy behaviour therapy
    photon therapy  
    other:

    		 
  2. How many doctors have you visited for your symptoms before you were diagnosed with CRPS/RSD?
     
  3. In general, since the beginning has your CRPS/RSD:
  4. Are you currently on any treatment for your CRPS/RSD? (Check all that apply)

    medications nerve blocks
    physical therapy surgical procedures
    spinal cord stimulator inthrathecal pumps
    psychotherapy behaviour therapy
    photon therapy  
    other:

    		 
  5. Have you returned to work? (Please check all that apply)

    full time part time
    not working at time of onset with ongoing treatment
    with medications without ongoing treatment
    without medications

    		have not returned to work
  6. Please rate your own overall success:
  7. Has any doctor helped to eliminate MOST of your pain and enabled you to live a semi-normal life?
  8. If so, please give his name and address: (optional)

  9. Please carefully read the IASP (International Association for the Study of Pain) criteria for CRPS/RSD below.

    1. Continuing pain out of proportion to inciting event (Pain out of proportion to a minor injury)
    2. Must report at least one symptom in each of the four following categories:
      1. Vasomotor (skin temperature changes, skin colour changes, temperature asymmetry)
      2. Sensory (hyperesthesia e.g. over-sensitivity to touch and light pressure)
      3. Motor/Trophic (decreased range of motion, weakness, tremor, dystonia, trophic changes (e.g. hair, nail skin changes))
      4. Sudomotor (edema, sweating, sweating on one side)

     
  1. Please answer the following questions in regards to the IASP (International Association for the Study of Pain):
  1. Based on your present condition, do you think you fall under this criteria?
  2. Do you think you have been misdiagnosed?
  3. Has anyone in your family been diagnosed with CRPS/RSD?
  4. If so, please indicate (mother, father, sister, brother, aunt, uncle, niece, nephew, other)
  1. Please indicate what you do yourself to cope with CRPS/RSD each day:


WHY WE ARE DOING THE SURVEY

We are preparing a petition for assistance in treatment of CRPS/RSD to present to various government agencies. May we please have your name on our petition? (optional) This information will be used in the manner described above. Should we wish to use it for any other purpose, we will contact you directly.

First Name:
Last Name:
Address 1:
Address 2:
City:
State/Prov:
Country:
ZIP/Postal Code:
EMAIL:

SURVEY VALIDATION

Please enter the code that appears in this image:

We thank you for your support. Remember, with many voices we are strong!

RESULTS WILL BE POSTED ON THE RSDCANADA.ORG WEB SITE.

OUR THANKS:

We thank Gary Bennett PhD, Anesthesia Research Unit, McGill University, Montreal, Quebec and Prabhav Tella MBBS, MPH, Johns Hopkins, Baltimore MD for their generous assistance with this survey.