by Jeannie di Bon, January 18th, 2024
First of all, If you have EDS or HSD and suffer from fatigue, you are not alone. When we began to analyse the responses in our study on the IMM using my Strengthen Your Hypermobile Core video series with Dr. Russek and Jane Simmonds, we found that fatigue was one of the biggest barriers to movement (along with pain).
We really believe that fatigue and hypermobility need more attention so that this is taken into account when prescribing exercises and rehabilitation to EDS / HSD patients.
What causes fatigue in hypermobility and EDS?
Hakim et al attribute the chronic fatigue found in hEDS to common findings such as poor sleep quality, chronic pain, deconditioning, dysautonomia, bowel dysfunction, nocturia due to bladder dysfunction (excess urination at night), anxiety/depression, and headaches and migraines.
From my clinical experience of 15 years working with the EDS /HSD community, plus my personal experience I would add to the list:
- Lack of postural tone and whole body organisation can mean we are expending too much energy just to hold ourselves up.
- Frequent bracing patterns, often used to create stability in hypermobility, also expend a lot of energy and interfere with breathing patterns.
- Breathing pattern disorders can also impact fatigue in EDS / HSD.
- The stress and anxiety of living with a chronic illness, plus the fear of attending medical appointments or appointment overwhelm can also trigger fatigue in hypermobile patients.
Fatigue is not the same as being tired.
Fatigue is considered chronic if it lasts more than 6 months (Source). Chronic fatigue is described as “a persistent overwhelming sense of tiredness, lack of energy, and feeling of exhaustion”(Source). It’s not something that goes away with a nap – though naps can be helpful!
Exercise physiologist Emily Cochrane recently joined us in The Zebra Club for a members meet-up, and highlighted the difference between the two. One of the main differences she described between fatigue and tiredness is that people with tiredness tend to feel better after a nap or sleep and can “push through”. Whereas with fatigue, sleep tends to not be refreshing. It’ also tends to be associated with feelings of heaviness and weakness.
In my own experience, that of my clients, and The Zebra Club community, fatigue exists on a spectrum like many other things we experience in the hypermobile community. Some of us have mild fatigue, and some are severely affected.
We asked our Zebra Club members how they would define fatigue and here is what they said.
I feel my fatigue as an absolute physical weight — it takes monumental effort to carry out normal household tasks, and really affects my motivation (because my body feels so HEAVY and tired). My mental/emotional capacity is also lower during periods of fatigue. No matter how much I rest or sleep, it doesn’t help alleviate it; time does. – Jan
A deep all over my body heaviness that transitions into pain when I move. It exists in layers. It’s mind fatigue and body fatigue working together or apart from each other. It’s always there. I can feel a layer lifting when I get better or layers adding when I get worse. – Helene
An inability to function that is completely unlike tiredness. I often don’t feel tired at all – feel like I should be good to go, but am so fatigued I cannot function normally. Inability to multitask in any way – like sometimes I have to close my eyes to speak so I can put my worlds together. – Barbara
Like the battery isn’t just empty but dead. – Jo
Inability to function properly on any level. Unless you’ve experienced it like we have, people don’t understand the difference to just being tired. – Sue
My tips for movement with fatigue
- Pacing: Pacing is a fantastic way to manage energy requirements based on you daily demands. See the member meet-up presentations by Jo Southall and Emily Bland for more tips on this.
- Rest when you need to – don’t push yourself
- Start low and go slow
- Movement snacks
- Break down classes or do some of your favorite feel-good moves throughout the day
- Go back to easy gentle classes when in a flare. Particularly classes in the Mindful & Stress and Sleep sections of the The Zebra Club app are great for this
- Be kind to yourself . You are doing a great job, including days you can’t work in your movement practice. Like Zebra club member Caroline said, “guilt compounds the fatigue!!!”
- Breathe! Find videos on breathing in The Zebra Club, here, or here: relaxed breathing to help calm the nervous system.
Check out this video for more of my thoughts on fatigue including a free gentle class for fatigue days.