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)
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 | 60–70% | Vertebral column with the neck and tailbone, knee joints | 60–80% |
Palmar side of the fingertips | 40–50% | Shoulder region, elbows, thumb saddle joint | 40–50% |
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% |