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EDS Flare Ups

A woman in a flare up comforting herself on a couch
Adam Foster
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This article is part of our comprehensive guide to hypermobility and Ehlers-Danlos syndrome.

Please click below if you would prefer to listen to this article on EDS and hypermobility flare-ups.

What does an EDS Flare-Ups feel like?

When a flare-up strikes, it’s like an existential storm that overtakes the body without warning, leaving a trail of diverse and intense symptoms in its wake, such as:

Physical Sensations:
The pain experienced during a flare-up can be excruciating and multifaceted. Some describe it as a deep, gnawing muscle pain that feels like someone is relentlessly twisting a screwdriver into the limbs. This pain isn’t stationary; it can migrate from one part of the body to another, such as from the elbow to the leg, intensifying to the point where it becomes unbearable.

Others report experiencing “fire skin,” where patches of skin emit a burning sensation so severe it feels like being held against a flame. This peculiar symptom can appear suddenly and linger, excruciating even the lightest touch or the brush of clothing.

Joint and Muscle Challenges:
You already know that joint instability is a hallmark of EDS. During a flare-up, this can lead to an increase in subluxations or dislocations with minimal provocation as the cortical maps blur [16]. This not only contributes to the pain but also adds a layer of psychological distress, as one must be constantly vigilant to avoid movements that could potentially trigger a dislocation.

Muscle spasms are also fairly common. Some describe them as feeling as if their muscles are cramping or seizing up, even when they are not actively using them. This sensation can be so severe that it feels like the muscles are vacuum-sealed, pulling tighter with no relief.

Systemic and Neurological Symptoms:
Flare-ups often bring a suite of systemic symptoms, including debilitating headaches, which might manifest as intense, head-splitting pain that comes and goes unpredictably. Neurological symptoms during a flare include heightened sensitivity to pain, where even a gentle scratch can reverberate deep into the muscles and bones, causing severe discomfort.

The fatigue associated with EDS flare-ups is profound and pervasive. It’s more than just feeling tired; it’s a comprehensive exhaustion that compromises cognitive function, making even simple tasks feel monumental. Some describe it as soul-sucking fatigue and a disorienting fog that clouds their thoughts and judgment.

Emotional Impact:
The unpredictability and intensity of flare-ups exert a significant emotional toll. The constant pain and fatigue can lead to feelings of isolation and frustration as routine activities and social engagements become increasingly difficult. The chronic nature of these symptoms can also stir feelings of anxiety and depression as individuals grapple with the unpredictability of their condition and the impact it has on their quality of life.

Avoiding and Managing EDS Flare-Ups

This is the part you have probably been waiting for or skipped. If you did, then I don’t blame you. Flare-ups can be hard and affect almost every area of your life. However, what I want you to take away from this section is that avoiding flare-ups or managing them when they happen comes down to you and the Biopsychosocial factors that govern your health.

What I mean by this is not to think of EDS in general; think individually. You have already seen so far that flare-ups come down to many interlinking factors, such as sleep affecting the stomach or temperature affecting POTS. So, If you have issues with mast cells and histamine, and your current diet seems to be putting you in a flare, reach out to a dietitian, look at the FOD map diet, and ultimately try and mitigate the biggest contributing factors to your flare up if they are diet base. We wrote a huge comprehensive article on hypermobility and diet with EDS dietitian and expert Katie Mednick, which you can find here.

This includes monitoring your osmotic balance, especially if dealing with PoTS alongside EDS. Managing fluid intake with isotonic drinks can help maintain proper hydration levels and prevent shifts in your body’s osmotic pressure that might trigger a flare-up. Staying hydrated with the right kind of fluids is crucial to your overall health, particularly in managing the symptoms of these conditions. Postural Orthostatic Tachycardia, in some studies [14], is an independent predictive factor for GI dysmotility; this alone shows you how flare-ups come down to many interlinking parts. For those dealing with low blood pressure alongside POTS, the fluid and salt balance becomes even more critical.

This is easier said than done, but it ultimately pays dividends. Triggers, though, are not created equal, and while you may have some control over the foods you eat, you don’t have any control over the weather. So, a sudden increase in temperature as summer approaches means that issues like PoTS may get very bad if you don’t have a plan to mitigate them.

For those more sensitive to triggers like joints moving out of place, pulling on ligaments, and causing a flare-up in pain, proper conditioning and core strengthening alongside cortical mapping training are needed to help stabilise joints. We wrote a comprehensive article on this subject; you can find it here in the hypermobility part 1 article. Some people also find that taping hypermobile joints during and after flares helps provide additional sensory feedback to help the brain track joint position.

In essence, avoiding flare-ups comes down to understanding how EDS affects you as an individual and putting plans into place to either stop the driving factors causing your EDS flare-ups or mitigate them as much as possible. Some of these factors, like the weather, will be out of your control, but many of them, my friends, are within your control, and that’s what it’s about: being proactive to avoid the many pitfalls that come with EDS, including flare-ups.

Please feel free to check out our Hypermobility resource section for help addressing some of the drivers of your own flare-ups.

-Adam-

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FAQ: Common Questions About EDS Flare-Ups

What does an EDS flare-up feel like?
A “body-wide escalation of symptoms” is one way to describe an EDS flare-up, in which a number of symptoms, including but not limited to: joint pain, exhaustion, vertigo, and gastrointestinal problems, gain intensity. It impacts numerous bodily systems at once and varies in intensity, but it usually feels overwhelming.

How long can a EDS flare-ups last?
A flare-up of Ehlers-Danlos Syndrome (EDS) can last anything from a few days to a few weeks, though this varies greatly from person to person. The intensity of symptoms is a factor that determines how long a flare-up lasts; symptoms that are more severe tend to last longer. The length of time a flare-up lasts can be influenced by various factors, including specific triggers like exercise, stress, or illness. Recovery time can also be affected by how well management strategies, such as medication and physical therapy, work. While some people with EDS may feel better after a flare-up, others may have symptoms that last for a long time and need constant care and attention.

What can I do to prevent EDS flare-ups?
Pacing oneself, eating right, drinking enough of water, getting enough sleep, and strengthening one’s supporting muscles [17] with light, frequent exercise are all part of a comprehensive prevention plan. One must be aware of their own triggers in order to prevent or lessen the severity of flare-ups.

For more on this topic, you might also want to read about medication strategies for managing pain in EDS.

If your flares seem to involve multiple overlapping conditions, it may be worth reading about the EDS, POTS and MCAS trifecta to understand how mast cell activation, autonomic dysfunction and hypermobility can amplify each other.

References

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  2. Parmelee PA, Gerhart JI, Burns JW, Post KM, et al. Relationships Between Sleep Quality and Pain-Related Factors for People with Chronic Low Back Pain: Tests of Reciprocal and Time of Day Effects. Ann Behav Med. 2018;52(6):517-531. doi: 10.1093/abm/kax044
  3. Verbraecken J, Declerck A, Van de Heyning P, De Backer W, Wouters EFM. Evaluation for sleep apnea in patients with Ehlers-Danlos syndrome and Marfan: a questionnaire study. Clin Genet. 2001;60(5):360-365. doi: 10.1034/j.1399-0004.2001.600507.x
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  7. Lam CY, Palsson OS, Whitehead WE, et al. Rome IV Functional Gastrointestinal Disorders and Health Impairment in Subjects With Hypermobility Spectrum Disorders or Hypermobile Ehlers-Danlos Syndrome. Clin Gastroenterol Hepatol. 2021;19(2):277-287.e3. doi: 10.1016/j.cgh.2020.02.034
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  9. Harada M, Kubo H, Nose A, Nishitani H, Matsuda T. Measurement of variation in the human cerebral GABA level by in vivo MEGA-editing proton MR spectroscopy using a clinical 3 T instrument and its dependence on brain region and the female menstrual cycle. Hum Brain Mapp. 2011;32(5):750-758. doi: 10.1002/hbm.21086
  10. Hugon-Rodin J, Lebegue G, Becourt S, Hamonet C, Gompel A. Gynecologic symptoms and the influence on reproductive life in 386 women with hypermobility type ehlers-danlos syndrome: a cohort study. Orphanet J Rare Dis. 2016;11(1):124. doi: 10.1186/s13023-016-0511-2
  11. Vernino S, Bourne KM, Stiles LE, et al. Postural orthostatic tachycardia syndrome (POTS): State of the science and clinical care from a 2019 National Institutes of Health Expert Consensus Meeting – Part 1. Auton Neurosci. 2021;235:102828. doi: 10.1016/j.autneu.2021.102828
  12. Adham S, Legrand A, Billon C, Mazzella J, et al. Assessment of arterial damage in vascular Ehlers-Danlos syndrome: A retrospective multicentric cohort. Front Cardiovasc Med. 2022;9:953894. doi: 10.3389/fcvm.2022.953894
  13. Sharp HEC, Critchley HD, Eccles JA. Connecting brain and body: Transdiagnostic relevance of connective tissue variants to neuropsychiatric symptom expression. World J Psychiatry. 2021;11(10):805-820. doi: 10.5498/wjp.v11.i10.805
  14. Alomari M, Hitawala A, Chadalavada P, et al. Prevalence and Predictors of Gastrointestinal Dysmotility in Patients with Hypermobile Ehlers-Danlos Syndrome: A Tertiary Care Center Experience. Cureus. 2020;12(4):e7881. doi: 10.7759/cureus.7881
  15. Larauche M, Mulak A, Tache Y. Stress and visceral pain: From animal models to clinical therapies. Exp Neurol. 2012;233(2):421-430. doi: 10.1016/j.expneurol.2011.04.020
  16. Clayton HA, Jones SAH, Henriques DYP. Proprioceptive precision is impaired in Ehlers-Danlos syndrome. SpringerPlus. 2015;4:323. doi: 10.1186/s40064-015-1089-1
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