CHRONIC PAIN SURVEY BY CHRONIC PAIN PATIENTS THE 2019 RESULTS

In total we received 31 completed surveys this year. Of that some of the survey questions were not fully answered so the numbers may not fully add up. I did a similar survey myself for the first time in 2017′ and only received 12 responses and that was with posting it everyday on both Twitter and Facebook through the 2017′ Chronic Pain Awareness Month. Here are this years answers.

1) WHAT IS YOUR AGE?
A) 20 -30 6
B) 31 – 40 7
C) 41 – 50 9
D) 51 – 70 6
E) 71 – Older 3

2) GENDER & AGE: MALE FEMALE
20 -30 3
31 – 40 2 6
41 – 50 2 10
51 – 70 1 5
71 – Older 1

3) HOW LONG HAVE YOU BEEN LIVING WITH YOUR CHRONIC PAIN?
A) Under a year 5
B) 1 – 5 years 4
C) 6 – 10 years 9
D) 11 – 15 years 7
E) Over 15 years 5

4) What is your current pain level?
1 No Pain 6 Radiating Pain 5
2 Some Pain 7 Miserable 4
3 Bothersome 4 8 Withdrawn Pain 6
4 Hurts 1 9 Killer Pain 4
5 Dr. Visit 1 10 Do Anything 6

4B) Possible add on’s to “My Pain Is” list:
11 Thrashing Pain
12 Do Anything II
13 Pills or Die 2
14 I dare You Ass Hat 5
15 Tell me to take Tylenol again 6

5) In what are of the United States do you live?
A Northwest 6 E Middle South 4
B Southwest 3 F Northeast 5
C Alaska G Southeast 7
D Middle North 3 H Other 3

6) How far do you have to travel to see a Pain Management Doctor?
A 0 – 10 miles 3
B 11 – 20 miles 2
C 21 – 40 miles 12
D 41 – 60 miles 8
E 61 – Plus miles 5

7) When is you pain at its worst?
A) Morning 4 B) Mid-Day 6
C) Evening 15 D) Night 6

8) Were you tapered off your opioids? Was it voluntary or involuntary? What was the length of your taper period? (days, weeks, months)?
Who tapered you off:
Voluntary: 4
Involuntary: 5

Taper Length:

1 – 5 Days 2
6 – 10 Days
11 – 20 Days 2
21 + Days 5

9) How long have you been on opioids based medications without any problems?
0 – 5 years 4
6 – 10 years 13
11 – 20 years 9
21 – Plus 5

10) Has your Pain Management clinic had to close due to the 2016 CDC Guideline or other?
YES: 8 NO: 6

11) How far do you have to travel to see your Pain Management doctor?
A 0-25 miles 5
B 26-59 miles 20
C 60-75 miles 2
D 76-100 miles 3
E 101 miles plus 1

12) Have you ever been denied getting your prescriptions filled?
YES: 5 NO: 4

13) If Yes, at what pharmacies?
CVS, KROGER

14) Have you lost all access to narcotic pain medications?
YES: 6 NO: 1

15) Please provide a brief background about your condition? What caused your issue?
Background: Scoliosis, Deg. Disc Disease, MS, Arthritis, Surgeries, Idiopathic Peripheral
Cause: Neurology, Broke Neck, Spine Damage, RSD/CRPS, Fibermyalgia,

16) On a scale of 1 – 10 (Worst – Best), what is your current pain level without medications? Same question, with medications?
Without Medications:
1 or 2 3 or 4 5 or 6 7 or 8 9 or 10
3 3 7 12 6

With Medications:
1 or 2 3 or 4 5 or 6 7 or 8 9 or 10
2 5 12 8 4

17) Have you tried any non-prescribed types of relief?
YES: 8 NO: 3

    A   Kratom        3           
    B   Marijuana     3           
    C   CBD Oil       4           
    D   Other….       6           
NOTE: SOME TRIED MORE THEN ONE OF THESE NON-PRESCRIBED.                     

18) Are you currently seeing a Pain Management Doctor (PMD) or your Primary Care Physician (PCP)? If you’re seeing a PMP, did you request it or did they?
PMD 27 I Requested It 22
PCP 4 They Requested It 9

19) What medical related products are you using to help control your pain?
A Prescription Medication 14
B Herbs or other form 9
C Medical Devices (Please Describe) 1

Pain Pump, SCS, Tens Unit, H-Wave,                      

20) Are you still working?
A Full Time 4
B Part Time 7
C From Home 8
D Not Working 12

21) Rate your doctor on how well you feel he listens to you? (1 – Least, 5 – Sometimes, 10 Always)
1 or 2 3 or 4 5 or 6 7 or 8 9 or 10
2 1 9 12 4

22) Do you feel your Pain Management Doctor has your best interest in mind?
YES: 17 NO: 11

23) Is you Pain Management Doctor compassionate?
YES: 17 NO: 10

24) How do you get them to understand home to relieve your pain the best way you can before even asking if more meds will help?
– Write a letter every appointment. Tell All. Straight Up

25) Do you think your Pain Management Doctor actually listens to you?
1 or 2 3 or 4 5 or 6 7 or 8 9 or 10
2 1 9 12 4

26) Is your pain level higher during or after any given activity?
During: 22 After: 9

27) How do you cope with walking?
– Forearm Crutches, Electric Carts, Mindful of every step

28) Do you use aids other than a cane, such as crutches, wheelchair, motorized chair, electric shopping cart, counters, shelves, other?

Crutches 2 Counters: 4
Wheelchair: 2 Electric Chair: 2
Electric Cart: 4 Shelves:
Other: 8

29) Please briefly describe your pain?
– Unrelenting, stabbing, burning, throbbing, deep gnawing, nagging,

30) Have you ever been addicted to any of the medications your PCP or PMD has prescribed for you? YES: 4 NO: 21

31) What one thing do you want people to most understand about chronic pain?
– Chronic Pains a bitch, limits everything, I didn’t choose this life,

32) Has anything you’ve ever tried truly helped reduce your pain?
YES: 22 NO: 3

33) Since the 2016 CDC Guidelines came out, has your Pain Management Doctor,
Stopped your pain med: 16
Reduced your pumps flow rate: 7
Reduced or Cancelled your boluses” 4

34) With the 2016 CDC Guidelines has your pain management treatment been affected? YES: 23 NO: 4

35) Does having chronic pain and being on a long term opioid treatment negatively impact your ability to get even primary care? YES: 9 NO: 12

36) With the 2016 CDC’s urine test requirements, have you ever tested as a false positive?
YES: 16 NO: 4

37) How did this impact your future treatment and medications?
– Harder to get appointments with new doctors. Need to earn trust

38) What do you do to cope (i.e. distraction, eating, chocolate, crafts, etc.)?
Distraction: 23 Eating: 4
Chocolate: 2 Exercise: 2
Crafts: 9 Other: 12

39) How much does it effect your daily life/mobility/activity/sex/depression/etc.?
Daily Life: 29 Sex: 29
Mobility: 24 Depression: 24
Activity: 27 Other: 17

40) What activities did you do prior to your chronic pain that you can no longer do?
Bowling: 3 Walking: 12
Golfing: 7 Basketball: 2
Running: 8 Other: 18

41) How do you “Fake” not showing your pain when at a family or work function?
– I don’t fake it. Stay home. Face says it all.

42) How many days are you down after completing a small activity, medium activity and large activity? Small: 3 to 4 Days Medium: 5 to 7 Days Large: 7 to 14 Days

43) When you are hanging on to your rope by the very end knot how do you calm yourself?
Yoga: 6 Walking: 12
Meditation: 19 Exercise: 3
Tai Chi: 4 Other: 22

44) Other than medications, what have you tried to help calm your pain?
Yoga: 9 Walking: 12
Meditation: 16 Exercise: 3
Tai Chi: 2 Other: 4

45) How do you explain your pain so the doctors understand it without thinking your just looking for more medications? – Write a letter. Cry. To the point.

46) What things can you do now that you couldn’t or didn’t do before the pump?
– Wait for trial, lite grocery shop, longer rides in car, vacuum small room

47) Has your sex life been affected either by the drugs themselves, you pain or by the physical location of you pump?

The drugs themselves: 12
My pain: 19
Location of the pump: 6

48) List one word to describe how having to rely on a pain pump makes you feel inside?
– Anxious, Thankful, Useless,

49) Was the pump your last option in controlling some or all of your pain or is this a choice you made to see if it would work?

I Made:                 12          
Doctor Suggested:       19          
Last Option:            25 

I Made: 12
Doctor Suggested: 19
Last Option: 25

ACKNOWLEDGEMENTS:
Thank you to the following courageous chronic pain fighters for offering the questions included in this years 2019′ Chronic Pain Survey by Chronic Pain Patients.

Richard Kreis, Kim Huth Arduser, David Clarke, Becky Stearns Forbes, Meg Kampen, Tracy Kelly, Starr, Lora Kennedy, Kim Crowley-Kinion, Chuck Malinowski, Jenny Novak, Terry Judd, Bob Sheerin, Karen N Darin, Kelly Huff Thornton, Nita Pelton Walter, Holly West, Grace Atkins Wharton
and Janice Williams.

Thank you for taking the time to read posts on my site.

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