Managing fatigue and it’s impacts

Three-quarters of EDS patients report dealing with severe fatigue (1). I really believe that fatigue and hypermobility need more attention and that this should be taken into account when prescribing exercises and rehabilitation to hEDS/HSD patients.

Managing chronic fatigue involves a multifaceted approach which can involve lifestyle adjustments, supportive therapies, and medical treatments.

Fatigue is not the same as being tired

Fatigue is considered chronic if it lasts more than 6 months (2). Chronic fatigue is described as “a persistent overwhelming sense of tiredness, lack of energy, and feeling of exhaustion (3). 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 be unrefreshing. 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. Sometimes we experience variations day to day or within seasons of life.

Understanding fatigue in the context of hEDS/HSD

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 (2).

Another report surveyed people with diagnoses of joint hypermobility syndrome or EDS hypermobility type (Before the 2017 diagnostic criteria). They asked questions about signs and symptoms related to fatigue. They found that 80% reported significant fatigue. They did statistical analysis and found that the top 5 predictors of the severity of fatigue were the extent of joint hypermobility (self-reported), orthostatic issues related to heat and exercise, levels of social participation, level of physical activity, and dissatisfaction with the diagnostic process and availability of management options (4).

From my clinical experience of 16 years working with the EDS /HSD community, plus my personal experience I would add to the list:

• Lack of postural tone and whole body organization 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.

Hypermobility, ME/CFS and Long-Covid

The fatigue experienced by hypermobile individuals may also be related to myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). A hallmark symptom differentiating ME/CFS from general fatigue is the presence of post-exertional malaise (PEM). PEM is a worsening of symptoms after minimal mental or physical exertion that is out of proportion to the exertion. You can read more about PEM here.

The current case definition according to the U.S. National Academy of Medicine for ME/CFS defines it as “Substantial impairment in the ability to function at home or work for longer than 6 months accompanied by profound fatigue (of new or definite onset – ie not life long) that is not substantially alleviated by rest AND post-exertional malaise AND unrefreshing sleep, plus at least one of: cognitive impairment OR orthostatic intolerance (5).

There is a significant overlap found in people with ME/CFS and symptomatic hypermobility. One study assessed hypermobility in people with ME/CFS and Fibromyalgia. They found in their population between 94-97% met different criteria for ME/CFS and among those, 81% met the Brighton criteria for joint hypermobility (6).

A recent study found that generalized joint hypermobility made people 30% more likely to not recover fully from COVID-19. They also found that the generalized joint hypermobility was a significant predictor for fatigue, and that fatigue was a linking factor between the generalized hypermobility and long-COVID (7).

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 words 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. – Su

Balancing activity and rest

Balancing activity and rest is crucial for managing fatigue.   Here are some ideas

• Prioritising tasks – focus on the ones that are most important each day. Let go of or delegate if you can. I have one client who can do two things each day. She decides which two she wants those to be – either attending an appointment or meeting a friend for a coffee. The rest waits for another day. It is OK to do this. We don’t need to feel guilty.
• Plan ahead – if you have an outing coming up, this may take some planning and use of resources and help. Use a planner to help schedule tasks that need doing and take regular breaks.
• Setting realistic goals – sometimes I would try to do so much in one day or week that by the weekend I was in bed for two days. My children were used to seeing me sleeping on the weekend. It was not ideal but I had exhausted my capacity. Establishing achievable goals based on energy levels and avoiding setting overly ambitious goals.
• Schedule rest breaks – this was a hard one for me. Rest felt like I was being lazy, but now I know resting is an essential part of my day.
• Relaxation techniques – deep breathing or meditation can be a lovely practice during rest breaks.
• Listen to your body – you know your body better than anyone. Look for the warning signs when you have maybe done too much for one day.  Try not to push through fatigue as it can make symptoms worse.
• Energy saving strategies – an OT can introduce you to tools and techniques that can conserve energy. My friend, Jo Southall, and I had a great conversation about the role of Occupational Therapy in hypermobility management.
• Gentle exercise – suitable exercise can really help in increasing energy levels.

Effective fatigue management strategies

Fatigue management is a comprehensive approach to minimizing the impact of fatigue on your daily life, to help ensure well-being and sustainability. It will require strategies and practices designed to identify and manage the causes of fatigue. I find stress a huge cause of my fatigue so stress management comes into this for me. Here are some other ideas.

• Address sleep hygiene if there are areas for improvement
• Gentle, regular exercise that is modified for hypermobility. It is important to start slow and gradually increase activity when you feel ready.  I am against graded exercise programmes and believe we should really listen to our bodies. Everyone is going to react differently to exercise and this must be taken into account.
• Pacing
  • Pacing is a fantastic way to manage energy requirements based on your daily demands. See the member meet-up presentations in the Resources section of The Zebra Club by Jo Southall (Occupational Therapist) and Emily Cochrane (Exercise Physiologist) for more tips on this.
  • Some members find a fatigue journal or the Visible App (which was designed for Long-Covid and ME/CFS) helpful for staying within their “energy envelope” and identifying triggers. I had no idea when I was diagnosed that mental fatigue could be a trigger for a fatigue flare. I thought it was purely physical activity.
• Rest when you need to – don’t push yourself. In fact, rest proactively if you know you will be expending more energy than usual.
• Improving muscle tone may help, though this can be hard when dealing with fatigue. One way to address this is with 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 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
• A balanced nutritional diet can help. Check out my YouTube on Diet Myths with Lorna Ryan
• Support Groups – connecting with others who have fatigue can provide emotional support and practical advice.
• Stress management – techniques such as mindfulness and meditation can manage stress, which can contribute to fatigue. I find this particular good on my fatigue days when I can’t exercise, but want to calm my mind. You can find a library of meditations I have created for dealing with issues we face in hypermobility in The Zebra Club.

Check out this video  for more of my thoughts on fatigue including a free gentle class for fatigue days.

Literature Review and Research by Catherine Nation, MSc, PhD

Works Cited

2. Hakim et al (2017) Chronic Fatigue in Ehlers–Danlos Syndrome—Hypermobile Type. American Journal of Medical Genetics Part C (Seminars in Medical Genetics)
3. Castori et al (2012) Management of Pain and Fatigue in The Joint Hypermobility Syndrome (a.k.a. Ehlers–Danlos Syndrome, Hypermobility Type): Principles and Proposal for a Multidisciplinary Approach. American Journal of Medical Genetics Part A.
4. Krahe et al (2017) Features that exacerbate fatigue severity in joint hypermobility syndrome/Ehlers–Danlos syndrome – hypermobility type. Disability and Rehabilitation.
5. Komoroff & Lipkin (2023) ME/CFS and Long COVID share similar symptoms and biological abnormalities: road map to the literature. Frontiers in Medicine.
6. Eccles et al (2021) Beyond bones: The relevance of variants of connective tissue (hypermobility) to fibromyalgia, ME/CFS and controversies surrounding diagnostic classification: an observational study. Clinical Medicine (London)
7. Eccles et al (2024). Is joint hypermobility linked to self-reported non-recovery from COVID-19?Case-control evidence from the British COVID Symptom Study Biobank

Last updated July 1, 2024