What is EDS fatigue and how on earth do you treat or manage it?

EDS fatigue just like true fatigue is not ‘just’ feeling tired.

EDS fatigue for me primarily hits completely suddenly, as if someone just removed my batteries. In its early stages that presents with things like word recall issues, issues concentrating, issues with body temperature, worsening of walking ability, dizziness with position changes and progresses to heavy limbs, struggling with walking, swallowing issues, migraines, tachycardia, worsening chronic pain.

If I ignore the early signs or if I don’t manage it well then I can get the the stage where literally no-one is home and I need physical assistance with everyday tasks ie someone to help me in the shower, someone to hook up my feeds and even someone to physically put me to bed. At my worst I can’t put a coherent thought together to know what comes next in the sequence of getting dressed or going to bed. Thankfully I have a wonderful team around me and the few time I have got to this stage they have been a great support. They also help me to recognise when I am starting to get fatigued and encourage me to use my fatigue management tools. Because of their support it is rare for me to get to my ‘worst’ but the knowledge that that can happen easily weighs on me and my loved ones.

My fatigue management looks like;

Decreasing me sensory input, having ‘quite’ visual and auditory environments.

Using spikey/massage balls to increase blood flow and ‘wake up’ likewise using spiky Matt’s to lay on (also helps with chronic pain)

Exercise!! (Physio, Pilates, swimming)

Cold water shower or cold water face wash

Meditation

Utilising wheelchairs and other mobility devices.

Using ‘talk to text’ and my hearing aids (on their way).

Having assistance with housekeeping and daily tasks.

Keeping ‘on top’ of my conditions and pain.

Ultimately though these help manage and get through the work day or appointment or coffee date the only thing restorative is good quality sleep. And this is in short supply when you have chronic pain, feeding tube alarms, small bladder, bursitis etc etc….

So please don’t be surprised or sceptical of me if you see me in and out of wheelchairs or doing things one day but not the next….. it’s is not on a whim but rather in response to a rebelling body. Think of it as an energy management plan…. and if you do see me in a wheelchair or if I get to go out with you or if you see me out and about know that I chose to spend my energy on it, because I WANTED TO 😊.

#ehlersdanlos

For some other info see;