Hypermobility & EDS Fatigue: It’s not the same as being tired.

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).

hypermobility

by Jeannie di Bon, January 18th, 2024

Hypermobility & EDS Fatigue: It’s not the same as being tired.

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 Clubhere, 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.

18 Comments

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Diane - 31st January 2024

Thanks for this – been struggling with fatigue for almost 30 years, and have slowly been seeing improvement over the past 5 for various reasons: I realized I had seasonal allergies and started taking medication for them; was diagnosed with Polymorphous Light Eruption and started avoiding sun exposure; figured out some major food sensitivities after the chronic inflammation became incredibly obvious due to sudden massive weight gain (which also led to being diagnosed with acid reflux and quite likely Barrett’s Esophagus – though after 2 gastroscopies it’s still inconclusive one way or the other) and changed my diet; have been working with a team including an osteopath, a physical therapist, a chiropractor, and a podiatrist for chronic pain issues (while also being referred to various specialists); and, thanks to your videos, I’ve been focusing more on alignment, including while lying in bed, since I realized the back pain waking me up after 5 hours of sleep was made worse by my position. Recently, I’ve also been learning about my neurodivergence (diagnosed with ADHD -Combined at 43 a year ago, and awaiting autism assessment next year), and how sensory overwhelm can also cause fatigue – so have been trying to pay more attention to my body’s response to sensory stimuli and listen when it’s uncomfortable – which is also helping (wearing those Loop earplugs to a loud event, for example, I don’t hit that sudden wall of exhaustion and needing to go home anymore). BUT now here is another piece to the puzzle! Knowing that just existing with EDS/hypermobility is also exhausting will help remove another layer, I think, as I learn to be aware and gentle and keep that in mind while caring for myself (it really is like fatigue is like an onion, with each layer having an exponential affect!)

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    jeannie-admin - 1st February 2024

    Thank you so much for sharing your experience. I agree – it is like striping the layers of an onion.

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Alexandra - 27th January 2024

Thank you for this ! I will be checking out the linked videos 🖤🤍🦓.
The fatigue is also what finally caused me to have my ADHD diagnosis. I hear that often for women, it is when they have a child it happens : all the coping mechanisms they were using to survive are not sufficient anymore. For me the child was fatigue 😂. Even though I see having EDS and a neurodivergence at the same time is common, it adds a layer of difficulty to comprehend for the doctors. They’ve often made me understand I need some more willpower, but they do not understand the mental or physical implications of what I am living, depending if they are treating my body or my mind. My latest psychiatrist does not understand that I am forced to push through fatigue if I want anything done, he assures me I just need to rest enough 🤣.

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    jeannie-admin - 1st February 2024

    Thank you for sharing your experience. I hope you find the videos helpful too.

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Emma Campbell - 26th January 2024

This is wonderful awareness to know that as difficult as fatigue is to experience, I am not alone and there is good reason to explain why I feel this way! I was diagnosed with generalized hypermobility spectrum disorder 8 months ago at the age of 38 and it is amazing to connect the dots of why I feel such deep and constant fatigue 🙏 All of this really resonates with me! I have started working on pacing and am noticing a big improvement in getting through the day!

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    jeannie-admin - 1st February 2024

    Thank you for your comment. So glad the article resonated with you too.

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Rebecca Bevirt - 26th January 2024

Great article full of suggestions. Fatigue is amazing. Good grief. So glad it is recognized here. Can EDS fatigue also be just because we have fatigue? Does it have to be the result of something? Or can it be just because it’s part of EDS?

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    jeannie-admin - 29th January 2024

    Thank you – so glad you found the article useful. It is such a complex topic and a big discussion – is it fatigue or is it EDS fatigue. Research is still ongoing.

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Jane Wragg - 26th January 2024

Being still a few times a day can stave off fatigue for me. Comfortable chair, feet up. Arms supported to take off the weight from my neck and shoulders helps. Hydrotherapy classes, Aquarobics in a very warm pool 34°C has transformed my ability to exercise and built muscles for the first time after so many surgeries. I sleep better and have less pain. Don’t give up moving. Find what works for you.

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    jeannie-admin - 29th January 2024

    Thank you – yes great you found something that works for your body. Thanks for sharing.

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Juliette Kendrick - 22nd January 2024

Oh my goodness, what Barbara said above about closing her eyes to be able to speak — yes, yes, and yes! I do this often; I find I can’t formulate a meaningful sentence with my eyes open. After all these years, the fatigue has sapped my brain function.
I’m so grateful to find that I have company in this struggle.

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Ali Crouch - 22nd January 2024

“I have to close my eyes to speak so I can put my worlds together”. So sorry to read someone else experiences this but some level of relief it’s not just me.

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    jeannie-admin - 23rd January 2024

    Thank you – yes it really helps to know we’re not isolated.

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Mischa Brown - 21st January 2024

A beautiful overview of fatigue with some great suggestions, as always. Thank you.

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Ashley - 21st January 2024

Thanks for these tips!!! Can’t wait to utilize them. You are such a huge help for me!!!