• arielaaviva

EDS Conference: Fatigue


As Dr. Francomano and Dr. Maitland stated in their talks, fatigue for EDS/MCAS patients can be profound (which is part of why I think all ME/CFS patients should be evaluated for the trifecta, by the way). In fact, many days fatigue is my worst symptom. Constant pain, diarrhea, nausea, etc I can push through to have a good day. But if I'm too fatigued to even try... There have not been adequate studies to evaluate fatigue in EDS, but below are the slides from two talks on the subject, with my notes.


Dr. Alan Pocinki

Evaluation and Management of Fatigue in EDS


  • Do thorough evaluations to find underlying reasons for fatigue -- treat those!

  • Very individualized

  • Often patients’ assessment of the most significant issues differs from physician’s assessment

  • Don’t have unrealistic expectations -- you won’t be able to be the “adventure hiker” that you were

  • Big three factors: pain, poor sleep, depression

  • Others: autonomic nervous system dysfunction, metabolic factors, MCAS, inadequate rest, (take breaks when needed! Don’t feel guilty if they have to be long!)

  • Cognitive tasks are very draining, include them in your energy budget

  • Emotional stress (watching the news!)

  • → Try to limit these stressors

Communicating pain:

  • Sometimes you don’t know how much pain you’re in or from what/where

  • DON’T UNDERESTIMATE how much pain you’re in “It’s not that bad, I’m used to it…” etc

  • “Background pain” → you stop being consciously aware of it

  • Types of pain: inflammatory, mechanical, or neuropathic

  • Daily strain on areas around the joints cause inflammation

  • Muscle relaxants and heat/cold, PT can address mechanical pain **don’t massage it out (muscles will just re-tighten to compensate)

  • Neuropathic is difficult to treat → pain is used to get your attention, so if you treat the pain but not the issue, your brain will compensate (see central sensitization)

Like pain, don't underestimate depression

  • Chronic pain depletes neurotransmitters

  • You don’t have to be “sad” to be depressed

  • Rx + TLC -- see the druggist but also the huggist :-)

  • Seratonin doesn’t treat brain fog, fatigue, motivation -- need other neurotransmitters like norepinephrine

Managing the sleep itself

  • EDS patients are hypersensitie to light/sound or “troublesome bed partners”

  • And have very vivid dreams

  • Don’t underestimate how bad your sleep is

  • Very frequent arousal/disruption and lack of deep sleep is common in EDS

  • Fitbits are getting more accurate for at-home sleep studies

  • Conventional sleep doctors sometimes read EDS sleep architecture as normal

  • **need hypnograms, not just sleep patterns

  • avoid caffeine/stimulants → more salt!!

Dr. Alan Hakim

Management of Chronic Fatigue

Largely the same as above, with a few additions:

  • breathing issues and tachycardia can impact sleep

  • Important that physician/patient establish a collaborative relationship

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