Sleep, Pain, and Fatigue in Ehlers-Danlos Syndrome

Ehlers-Danlos National Foundation

Learning Conference

August 9, 2012

Susan Cordes, MS, CGC

Online Survey

• The purpose was to characterize poor sleep, pain, fatigue, and RLS and determine if there are correlations to age and/or gender in patients self-identified with EDS.

• Used SurveyMonkey posted on the EDNF website with consent of local IRB.

Survey

• Demographics• Questionnaires

– Pittsburg Sleep Quality Index (PSQI)– Brief Pain Inventory (BPI)– Brief Fatigue Inventory (BFI)– International Restless Legs Syndrome Study

Group Rating Scale (RLS-RS)

Results

• Responses– Total: 1,252– Completed: 1, 054 (84.2%)– Analyzed 888

• Demographics– Age

• Range 14-83• Average 35.7

Demographics: gender

Results: PSQI

• Measures:– Subjective sleep quality– Sleep latency– Sleep duration– Habitual sleep efficiency– Sleep disturbances– Use of sleep medications– Daytime dysfunction

• Ratings were 0-3

Sleep

• Significant decrease in overall sleep quality as compared to controls– Mean rated it fairly bad (1.87 v. 0.35)

• Mild degree of insomnia compared to controls– Avg. time 30-60 minutes

• Less amount of time spent sleeping than controls– Reduced sleep efficiency (1.71 v. 0.10)– 8.5 hours in bed with 6 hours of actual sleep– Frequent nighttime awakenings (more than 3 times per week)

• Including feeling hot and having pain

• Often take sleep aids (1.52 v. 0.04)• Difficulty staying awake and energy (enthusiasm) levels

(2.06 v. 0.35)

Sleep

• Significant correlation to BFI– i.e. reduced sleep quality correlated with worse

fatigue

• Did not correlate with pain severity or pain intensity from the PSQI– Pain may only be a contributing factor to sleep

issues in EDS

Results: BPI

• BPI reports two scores: pain severity and pain interference

• Nearly all patients reported pain (98%)• Respondents reported 12 sites on average

with persistent/recurring pain– Most common were jaw, neck, back (especially

lower), shoulder, wrist, hand, digits, hip, knee, ankle, and feet

• Pain ranged from a 3-7 (on a scale from 0-10)• Average pain relief from medications 27%

Pain

• Significantly more pain severity than compared to controls

• Significant pain interference affecting general activity, mood, work, relationships, sleep, and enjoyment of life

• However, did not correlate with sleep quality or overall fatigue

Results: BFI

• 92% reported that they are unusually tired/fatigue in past week

• Average, least and worst fatigue levels during the past 24 hours ranged from 5-8 on a 10 point scale where 0 was no fatigue and 10 “as bad as you can imagine”

• Fatigue significantly interfered with general activities, mood, walking ability, work, relationships, and enjoyment of life

• Global score (6.11 v. 3.04 (sleep disorders) v. 4.04 (cancer))

• Correlated with decreased sleep quality

Results: RLS-RS

• 21% self-report diagnosis of restless legs syndrome– Symptoms occur on average 4-5x per week– Reported to have a mild impact on sleep

• 7% diagnosed with PLM• PSQI: legs twitching or jerking a few times a

week while asleep (assessed by bed partner)• Over all respondents, averaged moderate

symptoms

Conclusions

• Pain common, severe, involves multiple sites, and interferes with daily living

• Sleep disturbance common but frequent awakenings is more common than insomnia

• Sleep disturbance related to generalized fatigue but may not be the only factor

• Pain is somewhat related to the sleep disturbance but so are other factors

• Restless leg syndrome common but has only modest effect on sleep disturbance

Acknowledgements

• Brad Tinkle, MD, PhD• Sabrina Neeley, PhD, MPH• All the participants!