Understanding flare-ups in EDS

Can we ever really be prepared for a flare-up? And when they arrive, how do we manage them? They can be as unpredictable as the rain. You dress for the sun and a sudden downpour arrives. Sometimes we definitely know rain is coming and we can pack an umbrella but sometimes rain, like a flare-up, can appear when the sky seemed so blue. We just weren’t expecting it.

We recently had a conversation in The Zebra Club community about flares which led to an important question – how do you even define what a flare is? While I think this will be different for everyone, I think a flare-up is usually a temporary worsening of symptoms. Flares could last for a day or months, but we see a return to baseline.

I used to think flare-ups only happened after physical perceived over-exertion. But I now know and see how they can also happen with mental exertion, psychological stress, stressful live events, hormones, and even seasonal weather changes.

Not much research exists on why flare-ups happen but for those of us that experience them and work with people that have hEDS/HSD, we know they are very real.

Identifying causes of flare-ups

While this might not always be possible, it may help to identify what contributed to the flare.

We know that along with EDS can come a host of other syndromes and conditions including dysautonomia, mast cell activation syndrome (MCAS), myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS), migraines, and more.

When I was diagnosed with chronic fatigue two years ago, it was a shock to learn that flares can be triggered by mental exertion. I thought feeling like that was normal. I have been learning new skill sets to understand my triggers for mental and emotional flare-ups.

It seems that these conditions can each have their own flare triggers, flare at the same time, or interact with each other making it difficult to determine what may be causing your worsening of symptoms.

Here are some things that are commonly reported to contribute to flares

• Dysautonomia such as POTS or OH
  • Heat, physical strain, and dehydration are some things that can lead to worsening POTS symptoms (1).
• MCAS
  • A wide range of things can result in mast cell degranulation and subsequent flares: medications, environmental antigens (pollens, perfumes), pressure, exercise, heat, cold, UV light, stressful events, etc. Working with an effective physician, while hard to find, can help you to identify triggers and manage flares with medication (2).
• ME/CFS
  • Post Exertional Malaise is a cardinal symptom of ME/CFS
  • Although ME/CFS is a fluctuating condition, with severe or sustained worsening of symptoms please seek support from your doctor (3).
• Sleep Disturbances
  • We all know quality sleep is so important and often hard to get, but those bad nights often lead to a corresponding uptick in symptoms for some people.
• Hormones
  • In one study on gynecological conditions in hEDS, one-third reported experiencing a worsening of symptoms during the perimenstrual period. The same group also reported worsening of symptoms during the post-partum period (4).
• Stress
  • Stress commonly seems to exacerbate EDS symptoms potentially due to its effect on the nervous system and inflammation levels (5).

We asked The Zebra Club community what triggers they have identified for their flares, here are some of their answers:

• “Doing too much.”
• “Pushing through and not listening to the whispers of my body until it’s a full-on scream!”
• “Too much ‘stillness’ such as computer time, car time, or being inactive due to other illnesses.”
• “Activities out of my usual routine.”
• “Bad posture, especially while sitting.”
• “Extra time on computer/cognitive tasks of emails.”
• “Pushing my limits for a day.”
• “Emotional distress.”
• “Overuse/strain of my body.”
• “Overstimulation of my nervous system.”
• “Sometimes nothing at all.”

Emotional impacts of flare-ups

When we experience flares, it can be hard not to play the blame game or beat ourselves up for overdoing it. We might not always know the cause or it may be multi-factorial or the result of a “perfect storm” of events.

If we remind ourselves that this does not represent anything other than a flare-up, it may help keep the mental stress and fear out of the picture. Stressing about flare-ups can make them worse – it can be a positive feedback loop. Being a recovering perfectionist meant I used to feel guilty about taking time out and rest during a flare – but guilt is another huge trigger and energy drainer.

“Flares are disheartening. Even though I know they are part of life with this condition (and many other conditions) and I tell myself: this will pass (and it will. I know that).”

– Helene, TZC Member

Ways to support yourself during a flare-up

• Meet your basic needs first
  • Eat, drink water, try and work on sleep hygiene, get some sun if possible
• Rest, rest, rest
  • Rest proactively – a lovely idea from one of our ME/CFS subgroup members in The Zebra Club
• Don’t stop moving if you can help it
  • Even the most gentle movements while in bed can go a long way in keeping your fascia hydrated and preventing pain.
• Focus on gentle
  • Try the most gentle classes on the app or one like this
  • or this on my youtube channel
• Mindfulness practices and meditation
  • We have a growing collection of meditation audios on The Zebra Club app
  • A recent study of mindfulness based practice on hEDS patients found that practicing mindfulness helped reduce pain intensity, improve relaxation, reduce stress, and improve sleep (6).
• Breathing
  • Breathing can help regulate the nervous system: learn more in this clip from an interview I did with Ana Barretxeguren
  • Try it out with this  video
• Soothe your senses
  • According to Rachel Zoffness, “Self-soothing can turn off the false alarm signaling constant danger, inform your brain that your body is safe, and turn down the pain dial (7).”
  • What can you do to treat all 5 senses?
    • For example: Taste your favorite dark chocolate, listen to your favorite song, look at the sky and notice its color, smell your cup of yummy coffee, touch your favorite blanket or sweatshirt.
• Create a list or toolkit
  • Sometimes when we are in a lot of pain or dealing with brain-fog it can be hard to remember all of the tools we have at our disposal. Keep a list on your phone of your favorite pain relief tools, meditations, or soothing practices can help you come up with ideas when you are in the thick of it.
• Practice self-compassion
  • Flares happen, they are not your fault. What would you say to your best friend when they are experiencing a flare?
• Pacing
  • While pacing may be important for preventing flares when possible, limiting engagements and energy expenditure seems helpful.
  • The Zebra Club members can find a Pacing Masterclass by Occupational Therapist Jo Southall in the app (Resources > Presentations). We also have a presentation by Exercise Physiologist Emily Cochrane with more tips on managing energy and pacing.
• Distraction
  • Do you have a comfort show or movie? This can be a great way to find a little relief.

What helps: meditation body scans, practicing self-compassion, gentle movement – reducing the strength and connect and challenge classes, increasing the mindful and stress and stability classes (in The Zebra Club app), walking more gently, allowing myself more rest and play time, focusing on pacing with my work, allowing myself to slow down and take out unnecessary demands.

– Sarah, TZC Member

Feeling safe and supported and like I have choices and tools to manage a flare has been the biggest help for me, so far. The tools themselves are less important than ramping down (rather than up) my systems’ responses to pain or fatigue.

– Dierdre, TZC Member

Managing exercise-induced flare-ups

Another type of flare I often hear about is physical flare-ups leading to pain or fatigue. We often hear about these when people experience pain when they first start an exercise program or are maybe working with someone who is encouraging them to go farther or harder than they may be ready for. After lots of trial and error, I’ve figured out how to manage and control flare-ups from physical exertion. I understand my body, and the signals and know when to stop and scale back.

I talk about physical flare-ups a lot with my clients and Zebra Club members online. It is important to remember these are flare-ups. They are a short period in time and importantly they do not mean we’re going backwards in our progress.

A flare-up means in that moment we have taken our tissue past its current tolerance level. It was not as prepared to do more. We need to return to our previous baseline. The more tissue tolerance we build, the greater the baseline and over time the less flare-ups.

According to EDS specialists Jane Simmonds and Rosemary Keer, “vigorous treatment can often cause an exacerbation or flare-up with deleterious effects” (8). It can be beneficial to find providers who understand EDS and the complex nature of this condition, or at least providers who will listen to us.

It can be hard to find our baseline as people with hypermobility can also experience delayed onset muscle soreness (DOMS) (9), so it can be easy for us to overdo it at the time. This is why we advocate in The Zebra Club for a start low and go slow approach.

Improving movement patterns to reduce flare-ups

I always recommend starting low and slow. The first thing is to create a sense of safety for the nervous system.  Plus, a trusting relationship between patient and provider – we need to feel safe that the provider is not going to push us to do things we are not ready for.

Improving movement patterns is best to start with foundational movements – I have a video on called Exercise Principles that explains the six hypermobility principles of the Integral Movement Method.

It takes time because we basically need to rewire the nervous system and its reaction to movement. I always tell my clients – it is like wiping a computer hard drive of data and replacing it with new, efficient, safe data.

The importance of gentle exercise routines

Practice makes progress. If we start low, go slow, and maintain consistency in our practice, we can start to see lasting results. Oftentimes, we may feel we want to do more on our good days and push a little harder but that often comes back to bite us. It is much better to approach exercise routines with 10 minutes a day regularly than an hour that leads to a flare-up and a crash. This is also recommended if you get MCAS reactions to exercise (2).

Boom and bust is a common thing with EDS / HSD. Ideally, we want to avoid that. Following a regular, gentle exercise routine can help. Don’t feel the pressure to do more or compare yourself to others. We are all unique and our bodies will respond differently.

Long-term management of flare-ups

While we may not be able to completely prevent flares, there are things we can do to support ourselves and hopefully reduce the frequency and duration.

• Movement
  • I use many of these strategies, and ultimately, it’s the movement every day that helps keep my tissues healthy. Sometimes movement practice might not be getting on your mat.  All movement counts.  Walking to the shops, making a bed, carrying the shopping, pushing the pushchair, and so on. Don’t feel bad if you don’t always make it to the mat – life happens. If we stress about this, it can contribute to flare-ups.
  • Be kind to yourself. Moving daily in a mindful way as you go about your daily activities is so much more important than beating yourself up because you didn’t make it to the mat today.
• Mediation
  • I have made meditation a non-negotiable part of my morning routine – I find this invaluable for calming my nervous system. This can help relieve pain as well.
• Rest proactively
  • This is my new favourite concept. I used to feel so guilty about resting, but now I make time for it. It has been a game changer in terms of flare-up management.
• Speak up for yourself
  • I know this can be hard, but often, our loved ones may want to help. I have asked friends to not wear perfumes around me as this is an MCAS trigger for me. They were happy to oblige.
• Add things to your routine that bring you joy and peace
  • I’ve learned I need to take time out in nature. My nervous system responds to colours and smells. I love flowers, looking at colours, and being near water. It soothes my system. Having my dog Lupo has ensured I get outside in the park daily. The difference in my fatigue has been amazing. I never take this time out for granted and fit it into my busy schedule. It’s resulted in fewer down days.
• Planning
  • I also take time to plan my activities so I don’t get overloaded. This means getting enough sleep, taking rest during the day if I need to, and not feeling bad about declining invitations or canceling plans last minute. I’ve found not putting extra unnecessary pressure on myself has really helped.
• Planned flares
  • Sometimes we know we will go outside of our normal “energy envelope” and expect that it may cause some symptoms but we can choose to use our tools and plan to rest after.
  • But I was able to choose and plan for that “expected flare”. I was able to acknowledge it, accept it, and let all other tasks take a back seat for me to lie down when I got home and meet my own needs without guilt. -Rebecca, TZC Member

One of my biggest lessons I’ve had to learn is to stop and rest when things just start to feel uncomfortable and to not wait for major pain.

– Laura, TZC Member

We’re often hardest on ourselves. We can sometimes blame ourselves for flare-ups, feeling guilty. We can compare ourselves to others and grieve. But this is the time the nervous system needs us to be kind to ourselves. To nurture ourselves. Time for self-compassion. And remember, this too shall pass. It hasn’t ruined any progress you have made. It is a temporary bump in the road.

Don’t give up hope, think of how you have recovered in the past, it may take time, but you will get there

– Nikki

Literature Review / Research by Catherine Nation MSc, PhD

Works Cited

1. Fedorowski (2018). Postural orthostatic tachycardia syndrome: clinical presentation, aetiology and management. Journal of International Medicine.
2. Afrin (2013). Chapter 6: Presentation, Diagnosis and Management of Mast Cell Activation Syndrome. Mast Cells. Editor: David B. Murray.
3. Kingdon et al (2022) What Primary Care Practitioners Need to Know about the New NICE Guideline for Myalgic Encephalomyelitis/ChronicFatigue Syndrome in Adults. Healthcare.
4. Hugon-Rodin et al (2016). Gynecologic symptoms and the influence on reproductive life in 386 women with hypermobility type ehlers-danlos syndrome: a cohort study. Orphanet Journal of Rare Diseases.
5. Liu et al (2017). Inflammation: The Common Pathway of Stress-Related Diseases. Fronteirs in Human Neuroscience.
6. Lattimore & Harrison (2023) Pilot study of an online-delivered mindfulness meditation in Ehlers-Danlos syndrome (hEDS): effect on quality-of-life and participant lived experience. (Disability and Rehabilitation).
7. Zoffness (2020) The Pain Management Workbook, New Harbinger Publications, Inc.
8. Simmonds and Keer (2007). Hypermobility and the hypermobility syndrome. Manual Therapy.
9. Ostuni et al (2024) The Effect of Joint Hypermobility Syndrome on DOMS and Recovery Time. International Journal of Sports Physical Therapy.