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Table 1 Summary of pain questionnaire answers and marked areas in PDs. n is number of people answering the question. Percentages indicate the % of people asked (% of n) that gave the indicated answer. Average value refers to the scale used for some questions (0 = not at all, 3 = high intensity). Bold type indicates most common answers. The summary of the pain profiles groups the marked areas from most common to least common, with the percentage of PDs indicating the mentioned area (% of PDs column)

From: Pain drawings as a diagnostic tool for the differentiation between two pain-associated rare diseases (Ehlers-Danlos-Syndrome, Guillain-Barré-Syndrome)

GBS EDS
Possible answers % Answered (n) Possible answers % Answered (n)
1. Pain duration
 Less than 1 month 3.10% (n = 32) Less than 1 month 0% (n = 60)
 1 month to 1/2 year 6.30% (n = 32) 1 month to 1/2 year 0% (n = 60)
 1/2 year to 1 year 6.30% (n = 32) 1/2 year to 1 year 0% (n = 60)
 1 to 2 years 21.90% (n = 32) 1 to 2 years 3.3% (n = 60)
 2 to 5 years 28.10% (n = 32) 2 to 5 years 6.7% (n = 60)
 More than 5 years 25.00% (n = 32) More than 5 years 86.7% (n = 60)
2. Pain perception
 Persistent pain with light fluctuations 25.00% (n = 32) Persistent pain with light fluctuations 11.7% (n = 60)
 Persistent pain with severe fluctuations 6.30% (n = 32) Persistent pain with severe fluctuations 28.3% (n = 60)
 Pain attacks without pain in between 34.40% (n = 32) Pain attacks without pain in between 11.7% (n = 60)
 Pain attacks with pain in between 21.90% (n = 32) Pain attacks with pain in between 45% (n = 60)
3. Pain attacks
 3a. Average frequency
  Several times a day 28.10% (n = 32) Several times a day 20% (n = 60)
  Daily 6.30% (n = 32) Daily 8.3% (n = 60)
  Several times a week 18.80% (n = 32) Several times a week 18.3% (n = 60)
  Weekly 0.00% (n = 32) Weekly 1.7% (n = 60)
  Several times a month 6.30% (n = 32) Several times a month 10% (n = 60)
  Monthly 3.10% (n = 32) Monthly 0% (n = 60)
 3b. Average duration
  Less often 0.00% (n = 32) Less often 1.7% (n = 60)
  Seconds 3.10% (n = 32) Seconds 1.7% (n = 60)
  Minutes 15.60% (n = 32) Minutes 6.7% (n = 60)
  Hours 28.10% (n = 32) Hours 28.3% (n = 60)
  Up to 3 days 9.40% (n = 32) Up to 3 days 11.7% (n = 60)
  Longer than 3 days 3.10% (n = 32) Longer than 3 days 10% (n = 60)
 3c. Particularly severe pain at a certain daytime
  No 25.00% (n = 32) No 28.3% (n = 60)
  Yes, in the morning 3.10% (n = 32) Yes, in the morning 11.7% (n = 60)
  Yes, at noon 3.10% (n = 32) Yes, at noon 0% (n = 60)
  Yes, in the afternoon 3.10% (n = 32) Yes, in the afternoon 5% (n = 60)
  Yes, in the evening 15.60% (n = 32) Yes, in the evening 16.7% (n = 60)
  Yes, at night 12.50% (n = 32) Yes, at night 5% (n = 60)
4. Pain sensation
 4a. Physical pain qualities
Pain quality % answered “medium to high intensity” (n, average value) Pain quality % answered “medium to high intensity” (n, average value)
  Dull 40.00% (n = 30, av = 2.87) Dull 61.4% (n = 57, av = 2.11)
  Oppressive 26.60% (n = 30, av = 3.17) Oppressive 58.6% (n = 58, av = 2.36)
  Palpitant 20.00% (n = 30, av = 3.37) Palpitant 28.8% (n = 59, av = 2.95)
  Pulsating 10.00% (n = 30, av = 3.63) Pulsating 18.7% (n = 59, av = 3.31)
  Sharp 66.60% (n = 30, av = 2.17) Sharp 62.7% (n = 59, av = 2.12)
  Dragging 65.50% (n = 29, av = 2.21) Dragging 79.7% (n = 59, av = 1.83)
  Hot 30.00% (n = 30, av = 3.07) Hot 25.9% (n = 58, av = 3.05)
  Burning 63.30% (n = 30, av = 2.27) Burning 44.8% (n = 58, av = 2.64)
 4b. Mental pain qualities
Pain quality % answered “medium to high intensity” (n, average value) Pain quality % answered “medium to high intensity” (n, average value)
  Miserable 32.10% (n = 28, av = 3.07) Miserable 49.2% (n = 57, av = 2.53)
  Dreadful 26.60% (n = 30, av = 3.17) Dreadful 29.8% (n = 57, av = 3.07)
  Excruciating 40.00% (n = 30, av = 2.87) Excruciating 55.9% (n = 59, av = 2.46)
  Terrible 46.70% (n = 30, av = 2.6) Terrible 55.9% (n = 59, av = 2.23)
5. Area of pain—descriptions
Most common answer % answered (n, average value) Most common answer % answered (n, average value)
 5a. burning sensation
  Medium to high intensity 70.10% (n = 30, av = 3.8) Never to low intensity 59.3% (n = 59, av = 2.95)
 5b. Formication
  Medium to high intensity 83.40% (n = 30, av = 4.67) Medium to high intensity 62.8% (n = 59, av = 3.63)
 5c. Light touch is painful
  Never to low intensity 60.00% (n = 30, av = 3.1) Never to low intensity 60.4% (n = 58, av = 2.84)
 5d. Fulgurant, electrifying attacks
  Medium to high intensity 73.30% (n = 30, av = 4) Medium to high intensity 67.3% (n = 58, av = 3.90)
 5e. Sensitivity to heat or cold
  Never to low intensity 60.00% (n = 30, av = 3) Never to low intensity 55.9% (n = 59, av = 3.41)
 5f. Numbness
  Medium to high intensity 73.40% (n = 30, av = 4.37) Never to low intensity 50.9% (n = 59, av = 3.31)
 5g. Light push (with finger) painful
  Never to low intensity 60.00% (n = 30, av = 3.13) Medium to high intensity 83.0% (n = 59, av = 4.54)
 6. Pain profile, marked areas
Areas marked % of PDs Areas marked % of PDs
  Dorsal and plantar side of the feet 6070% Vertebral column with the neck and tailbone, knee joints 6080%
  Palmar side of the fingertips 4050% Shoulder region, elbows, thumb saddle joint 4050%
  Dorsal side of the left palm 30% Umbilical region, groin region, dorsal side of the knee joints, ankle joint, hand and finger joints, metatarsophalangeal joint, heel 30–40%
  Lower legs 0% parts of the ventral side of the thorax lower side of the head 0%