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
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
Largely the same as above, with a few additions:
breathing issues and tachycardia can impact sleep
Important that physician/patient establish a collaborative relationship