What living with Ehlers Danlos Syndrome feels like – “Pushing through Fatigue”
I just watched a really informative video by Dr Alan Pocinki who specializes in treating patients with Ehlers Danlos Syndrome (link here). Whilst it is specific to EDS and people who have hypermobility the themes in here are very relevant to anyone who suffers from fatigue so read on…
Apparently, fatigue, sleep disorders and dysfunctional nervous systems (dysautonomia) all go hand in hand for EDS patients. EDS patients have over-the-top adrenaline reactions or nervous systems which fail to modulate and impacts their sleep patterns causing (among other things) jumpy heart rates overnight and non restorative sleep. The adrenaline continues to over-react in relation to orthostatic issues and stresses during the day and they generate more fatigue. Sounding like a slippery slope isn’t it?
He talks about the concept of autonomic reserve and says, in EDS patients, it is low which then leads to over-response and over-correction in relation to body stresses. Hence the yoyo effect of feeling supercharged and anxious one minute and exhausted or dizzy the next. So it is about building the autonomic reserve back up to reduce those fluctuations which can take a while.
He doesn’t say why there would be over-reactive adrenaline in the first place. Logically I’m thinking for EDS patients the orthostatic issues would be the initial root cause (due to elastic blood vessels and issues with keeping the blood up) but that overtime, perhaps due to age or sleep deprivation or from continuously stressing a compromised body that these reactions get worse and more sensitised. Then before you know it you are in a vicious circle.
Doesn’t take a genius to think elements of this could apply to non EDS people too who also get this way due to ongoing stress does it? I’m thinking those who suffer from chronic fatigue or exhaustion.
He gives some great solutions which centre on reducing stress, building low blood volume, managing pain (which many EDSers would have from joint issues no doubt), avoiding hypoglycaemia, reducing the impact of adrenaline through blocking its impact (all hail the beta blockers) and enabling better sleep. All with the intent of calming the system down.
So for all those hypermobile people out there have a good look at the link below – it’s really quite informative. For everyone else, this reinforces the need for restorative sleep and rest for everyone and the perils of battling through fatigue and stress, or as I call it living in the 21st century, all of which can impact your nervous system function.
If you are experiencing continuous fatigue then take that as an indicator that your body needs support to restore and rebalance. We all need to ensure our nervous systems modulate properly for dealing with the day to day stresses of life! Good sleep and rest is vital for everyone.