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;

Many symptoms or manifestations of EDS can be ‘treated’ to lessen their severity or halt their progress, (rarely cured).

Since diagnosis i have been engaging in more targeted treatments and therapies. These treatments have all meant that in the past 6 months I have regained a lot of my muscle and have gained close to 15kg! (I lost most of my muscle and got to a BMI of 16.5 due to malnutrition from intestinal failure).

I am also fortunate enough to have been given access to a wide range of assistive technology (AT)that I am beginning to use and is helping greatly (more on these later).

Some of the treatments I participated in and AT I utilised this week are:

2x Clinical Pilates

2x Physio

1x Swimming

2x Occupational Therapy

1x Psychology

1x GP

Daily Tube feeding and Medication

Home Physio

Home Assistance

Meditation

Leg Braces (AFO’s)

HR monitor, BP monitor, BSL monitor and many other AT.

I also excitingly and (with much trepidation) got to test drive some possibilities of future AT like powered wheelchairs, and Bionic Arms.

Additionally one ‘treatment’ that I participate in is work. Yes work! Being employed and contributing to society to me is as essential as some of my other treatments. It gives me an external sense of purpose, helps me be connected to others, helps me give back to the community, allows me to be present and accountable, and it keeps my brain busy on constructive things.

Working does mean that I do need extra assistance and have to be very careful with fatigue management to ensure that I am still able to engage with my family and do my other treatments.

Last but in no way least!! My other big ‘treatment’ is family, friends and connections. Being loved and loving others. A basic human right and need but without which my mental health and my ability to cope with the rest of it would not be possible.

Yes I struggle with time management and fitting it all in and not ‘burning the midnight oil’. I am learning not to push so hard (yes this still needs ALOT of work 😜) so feel free to tell me to slow down, to ask have you done too much….. just be prepared for sass in return or perhaps a sincere query into how your doing too….. because we all need to be reminded at times to take care of ourselves and to love ourselves 😜❤️❤️

What is EDS for me…..

EDS itself is lifelong and incurable, it will ‘flare’ at times but a base level will always be present.

For me that base level has slowly been ‘worsening’ in part due to treatments for symptoms and medications and in part as it is just the nature of my EDS.

Whilst EDS is incurable, some symptoms can be ‘treated’ to lesson their progression and or impact.

I.e physio and OT to help maintain muscle (something which is hard for people with EDS) and maintaining muscle is important to help keep joints and organs in place as my ligaments just give out (and other then surgery there are limited options for ligaments).

Or feeding tubes to help maintain weight and to get adequate nutrition.

Some of my base level everyday symptoms are; chronic pain, gastrointestinal failure, hypoglycaemia, hearing difficulties, hernias and prolapses, subluxations, fibromyalgia and arthritis, drop foot and peripheral neuropathy, bursitis and tendinitis, dysautonomia (dysfunctional autonomic nervous system), fatigue, serotonin syndrome.

This means that I get to be one of the most diverse, intriguing, stubborn, and comical people I know. Life with me is never dull and you never know where the next thing or giggle is going to come from.

From being able to be snuck up on and made jump really easily which get lots of laughs and good times at work, to being able to be really empathetic and understanding to a wide range of people. It is all part of me, and makes me who I am, I am not defined by these but I am moulded by them, the way I view the world is coloured by it and gives me an often unique way of seeing things. My life isn’t always fairyfloss and daisies, neither is yours….. but my life is full!!

This month is Ehlers-Danlos Syndrome awareness month (in America). But I thought it would be a good opportunity to share a little about my journey and how Ehlers-Danlos Syndrome (EDS) effects me.

EDS is a genetic (usually inherited) connective tissue disorder. Of which there are 13 sub-types. EDS is also a syndrome this mean that there are a wide range of symptoms and manifestations that can differ greatly amongst effected individuals.

Connective tissue is found throughout the body and is likened to the ‘glue’ that holds the body together. When you have faulty connective tissue almost any organ or system can be affected. Some of the more prevalent systems effected by EDS are: Autonomic Nervous Systems, Gastro Intestinal, Mast Cells, Joints.

My Journey to diagnosis was LONG and complicated but I was formally diagnosed with EDS earlier this year.

EDS to me is like an overarching umbrella that helps most of my other conditions etc make sense.

#ehlersdanlos