Managing hEDS & HSD Flares

Building confidence in managing hEDS or HSD flares takes patience and practice.

The term “Flare” in hEDS and HSD is typically used by patients in reference to an increase in symptoms related to any aspect of the syndrome; pain, GI distress, MCAS reactions, dislocations, subluxations, cardiovascular challenges, dysautonomia symptoms, insomnia, fatigue, brain fog, a sense of being “wiggly” or dangerously clumsy and more. As discussed in our After Diagnosis article, the symptoms that beget a flare are not the same across individuals because each person with hEDS or HSD is unique. Flares can, however, carry common threads. Managing flares and building the confidence to do so without extreme interventions is a matter of trigger recognition and health-promoting practices within and outside of a flare episode.

Some people with hEDS or HSD describe cyclical flares that encompass roughly the same set of symptoms arising on a regular basis but to varying degrees of severity. Others with the comorbidities of MCAS or POTS may experience both cyclical and seemingly spontaneous flares partly due to environmental triggers such as scents, foods, products, stress, etc.

It is also common to hear people with hEDS or HSD describe pain and fatigue flares that were brought on as a result of specific activities or events in their lives. The severity and duration of a person’s pain flare is completely individual as it depends on what brought it on, their baseline health going into the flare episode, their environment, and the proficiency and comfort with the tools they have at hand to help manage.

Some Common hEDS & HSD Flare Sources:

Identifying your flare patterns and acute triggers can help you make decisions on how best to manage them. The following list represents some of the most frequently seen contributors to the onset of a flare:

• Hormonal changes: If you have a period, increased laxity often occurs after ovulation and leading into the luteal phase which can perpetuate a person’s cyclical flare. We discuss hormonal considerations in greater depth in another article but this 10-14 day window prior to a period is important to pay attention to. This does not apply to those on BCP or hormonal IUDs (a pill bleed is not the same as a true period).

• Dietary Inputs: In simplest terms, foods can have a pro-inflammatory or anti-inflammatory impact, and this can also be dose-dependent (i.e you may tolerate a single piece of bread just fine but doing so daily could lead to widespread reactivity). “Overdoing” a food source can lead to inflammation that can perpetuate a flare just as “underdoing” supportive foods can make it harder to recover.

• Overtreatment: High velocity adjustments or other aggressive tissue/manual techniques can create a negative catalytic effect throughout a hypermobile system. Less IS more when it comes to treatment and the acid test of whether treatment was too much is what happens 24-48hrs after treatment. Overtreatment can also occur with what would otherwise be appropriate treatment methods that are being used too frequently (eg, twice a week, weekly longterm) without sufficient time for active recovery and integration in between sessions.

• Environmental triggers: These are especially true for anyone with POTS, MCAS, or ANS issues and include everything from cleaning products, skin care products, airborne smells and moulds or pollens, humidity, temperature swings, and more.

• Stress: While stress is a normal part of life, chronic stress or high inputs of stress into a system that is prone to being more affected by it can lead to greater challenges with resolving flares.

• Certain medications: Medications often have side effects and while taking them to resolve one issue, a different or new one can crop up. Many pain killers, for example, are reported to be “unsatisfactory” in resolving pain for people with hEDS and their use is also known to contribute to GI flares, dysmotility, constipation, and a new source of pain.

• Movement, Exercise, or Life Inputs: Not being prepared for the task at hand can create a pain flare cycle. Whether it is a much longer walk than your usual, standing or sitting for many hours without movement breaks, or exercises that exceed your current capacity, all of these can contribute to a flare. This does not mean you shouldn’t try to increase your capacity: Doing so in a step-wise progressive manner will lead to success vs jumping in the deep end of a huge increase in output.

• Lack of Sleep: Loss of sleep heightens pain and can contribute to poorer coordination in motor tasks. The irony is not lost on those whose pain is causing an interruption of sleep and increasingly poor proprioception. Finding ways to break the cycle, as discussed in our Overcoming Insomnia article, can reduce pain sensitivity and help a person get on top of and then through a flare.

• The accumulation of any or all of the above: More often than not, a flare is brought on by a multitude of factors. It is not uncommon to see someone with hypermobility “make it through” a particularly challenging stretch of time only to feel like they fall to pieces once they think they’re clear of it. If you picture your total body tolerance as a cup, even a slow and steady drip can eventually cause it to overflow. Counterbalance for life and stressors requires recovery (an emptying of the cup in this analogy) in both active (movement, meditation, food, etc) and passive forms (sleep, treatment).

With all of that said, when you’re in the thick of a flare, addressing it is the top priority and preferably with tools that won’t carry side effects.  When a little reprieve has been found, it can be easier to see what accumulated factors and patterns may have led to the flare’s onset and whether anything can be put in place to reduce their impact or recurrence.

Tools for Flares

The following list is not extensive though it covers the main blocks that we have found can bring relief with practice. We work with clients one-on-one to determine the specific tools they need but the ones shared here are those that we feel safe offering up for consideration to populations at large.

In applying any of the following tools, it is best to adopt a long term view of them. None of these are pharmaceuticals (that’s for you and your doctors to decide on and no website should be delivering general advice about prescription medications, certainly not with hEDS). As such, none of them will create a “knock out” eradicating effect on pain or other symptoms in the way a medication may temporarily do.

Within taking a long term view, it is worth mentioning that it takes practice to change anything within a human body for better or worse. Nothing natural “works” with a single dose but the accumulated practice does.

Managing flares and building the confidence to do so relies on being proactive about our health in general then knowing which tools are well practiced enough such that our body feels safe with them: This safety and practice allows us to lean on them in times of need i.e a flare.

*Any products pictured below are not sponsors of or affiliated with Move Daily in any way.

Icing for Joint Pain

Many people reach for heat to soothe pain and while that can be helpful for muscle tension (it increases blood flow and promotes tissue relaxation), ice cycling is a good alternative for inflammation or aggravated joints. A cyclical application promotes brief blood flow restriction (vasoconstriction) followed by a re-warming period whereby the restriction eases such that blood flow increases (vasodilation).

This strategy can be a much more tolerable method of applying ice while still providing analgesic (pain relieving) benefits and ultimately promoting blood flow. Use an ice pack on the area for 5 minutes, take it off for 5 minutes, and repeat for 3-4 total cycles.

Topical Treatments for Inflammation or Muscle Tension

There is an abundance of creams and ointments available for topical application promising pain relief: They allow a person to bypass the need to digest a pain killer that their system may not tolerate. Among the non-prescription or non-NSAID topical treatments, Magnesium gel and CBD creams can be appealing for sensitive or reactive systems. It is worth noting that there is very little research on non-pharmaceutical choices at present. Topical CBD is still an emerging topic in research though a small randomized control trial yielded positive results (reduced pain) in the application of topical creams in participants with neuropathic pain. Animal models have also demonstrated reduced pain behaviours with topical application though there is a long way to go in understanding the mechanisms.

Magnesium has been studied for its potential role in pain reduction, post-surgical pain outcomes, central pain sensitivity, and more though studies mostly center around oral or IV infusions with considerable variability in outcomes. The appeal of magnesium gel is that it is a simple topical aid to help reduce swelling or sensitivity in an area with little to no averse side effects and greater accessibility and affordability than CBD. As with anything, individual sensitivity will vary and not all products are equal but these are worth considering due to their innocuous nature.

Water Quantity, Quality & Electrolytes

While there is debate about how much water a person needs due to the 8 glasses myth not accounting for individual or environmental variability, there is no question that consumption of clean water contributes positively to digestion (gut motility), POTS symptoms, MCAS symptoms, and has a knock-on effect on all tissues. Dehydration has also been linked to a predictable increase in pain sensitivity.

The increases in chemical exposures, mould, mycotoxins, stress, and reductions in water quality, food quality, and physical activity have a cumulative effect on making the susceptible hEDS patient much worse. In this manner, hEDS patients are much like canaries in coal mines reacting earlier and more intensely to changes in our environment that are not health-supportive but that a collagen-typical person may have greater tolerance to, at least for a time. While most of us live in areas that have chemically treated water, a home filter system can remove residual heavy metals, pesticides, and other residual chemical elements that a hEDS or HSD system will be more likely to react to (The Big Berkey system pictured above). Progressively increasing water intake with the addition of salt has been shown to help POTS patients. If you’re drinking <500ml of water at this point, try increasing in small amounts slowly (over weeks) and add electrolytes. Note that more is not better and you should speak with your primary care provider if you find yourself consuming over 3L on a regular basis.

GI/Digestion Support

Aside from joint pain, GI pain or problems present as one of the earliest life symptoms that people with hEDS or HSD experience and the GI is often involved in the mix of a flare. The structure of the GI tract, as discussed in our Top 5 Considerations article, lends some explanation as to why there is more reactivity to foods and issues with motility than the average population.

Mast cell stabilizers such as Quercetin are known to dramatically reduce symptoms and improve patient outcomes and can safely be used alongside exercise interventions. Furthermore, nutraceuticals such as Vitamin C, Vitamin D3, Co-Q10, and L-Carnitine are reported to improve GI function and systemic reactivity in people with hEDS and MCAS.

To be clear, managing the GI in a flare is not just about supplements and food: Factors that will impact a GI’s function and state of inflammation are discussed in the aforementioned Top 5 article as they extend into our state of stress, rate of food consumption, and environment to name a few.

Movement

A flare may certainly require a shift in movement volume or exercise regimes but stopping altogether is ill advised: Stopping fully can prolong a flare as regaining physical capacity that was lost (reconditioning) takes longer than the process of loosing capacity (deconditioning). While more rest overall may be needed, inactivity and total rest do not aid in pain reduction.

Bed rest should be kept to a minimum outside of extenuating circumstances. It can result in a loss of muscle mass required for joint stability, cardiovascular deconditioning which can exacerbate POTS and fatigue, and result in reduced tissue tolerance for loads and postures. This ultimately makes daily activities more difficult during and after a flare. The “right” dose of movement for your body can help you retain stability, reduce inflammation and pain, maintain conditioning, decrease anxiety or depression, and for those with MCAS can even serve as a mast cell stabilizer. Our Movement & Exercise article discusses some ways to think about your movement options if you’re unsure where to start.

Mental Space

Reducing stress, anxiety, panic, fear, or anger within a flare will go a long way towards reducing pain and improving recovery time. This can be done through a variety of means such as meditation (using an App or not), music and breath work (as discussed here), gentle movement such as Qigong or Feldenkrais, as well as addressing our own thoughts and feelings around the flare experience.

The start of a mindful process can begin with observing the words you use in and around your flares. This isn’t about pretending we aren’t upset, angry, disappointed, or in pain but instead acknowledging those feelings and still working to be on the same team as our bodies: Avoid using terms such as “going to war” against your body, believing that your body is “fighting you”, or that your body is “broken/bad”. At any and all times for all people, the body is working to stay alive. By listening to what it needs rather than trying to shut it down, we can learn a lot more from our flares in a way that helps us move through them.

Final Thoughts

Flare patterns can be broken or changed no matter how entrenched they may seem within your system. Your baseline health matters a lot: What you do proactively between flare ups to augment or maintain your baseline health will carry over into how well you can get through a flare, how often they occur, and how quickly you can recover from one.