Category: Not Just Bendy Blog

Mast Cell Activation Syndrome (MCAS) and its Relationship to Hypermobility

Posted on by Sharon Hennessey

There is a significant overlap in the conditions and the symptoms of MCAS, POTS and symptomatic hypermobility. Learn more in this informative blog.

From an early age, I never really coped with band aids and would always end up with a rash.  By mid 20s, I knew using strapping tape on myself was not a solution due to the harsh skin reactions (a problem, as I was burning out as a physio working 55 hours a week and I needed external joint support via tape to get through). Gardening also started to become problematic, as my skin would have a similar reaction if Australian Native Plants touched me.

I knew I was odd and reacted in strange ways to medications – lots of side effects for some and no effects for others.  I started to learn to only try new medications on a weekend and at half the recommended dose to give my body time to recover.  I, of course, battled my hypermobility and POTS without a lot of understanding until my children were born in my early 30s. Then, I began to realise a lot of my management strategies (rest, electrolytes, pacing, salt, strength exercises) finally made sense.

But Mast Cell Activation Disorder (MCAS) caught up with me when I was in my early 40s and suffered with idiopathic urticaria (unexplained hives all over my body).  Everyone told me I was stressed or allergic to something, but I seemed to be allergic to the world!  Anything I touched or anywhere I had clothing – socks, shoes, underwear, and pants left me with raised welts for days. I now know this is called dermatographia. Dermatographia, also known as skin writing, is a condition in which the skin becomes raised and inflamed when it is stroked or scratched lightly. This condition is believed to be caused by an over-reaction of the mast cells in the skin.

My first bout of urticaria lasted about 3 months and settled with antihistamines. Eventually, I forgot all about it as it was just another “one of those things.”   However, the second bout started 9 months later and lasted for nearly 18 months.  Imagine having 400 mozzie (mosquito) bites all over your body, extremely itchy all the time.  If I scratched them, I ended up bruised.  It wasn’t until I took a truck load of medication and injections (see the medications list below as I had them all) AND took mast cell stabilisers, that I am proud to say no hives for nearly two years! This also helped my gut to function better which was a major improvement of my quality of life.

Now, I am still allergic to tape and plants – but at least I know what to do!  It is quite possible that MCAS has also been behind many of my other issues such as fatigue, stress, and pain but this is hard to know, as I have been managing my symptoms conservatively my whole life.

Also, before I start explaining MCAS, it is important to note that Postural Orthostatic Tachycardia syndrome (POTS), hypermobile-Ehlers Danlos syndrome and MCAS are frequently connected conditions, as often clients have all three conditions with similar symptoms therefore difficult to distinguish the underlying cause.

MCAS is very hard to explain.  And forgive me if I do not make it completely clear.  Even as an experienced scientist it has taken a long time for me to have a rudimentary understanding of it all.

Please understand that this information is intended for educational purposes only and is not intended as medical advice. Everyone is encouraged to obtain independent medical advice from their own medical team about their management.

There is a significant overlap in the conditions and the symptoms of MCAS, POTS and symptomatic hypermobility. Kohn & Chang (2020)

Mast cells are a type of specialized white blood cells that play a vital role in the body’s immune system. They are found in large numbers in the skin, lungs, nerves, vessels, gut, and other organs. Inside the mast cells are hundreds of different mediators which are usually released in a controlled way when the body needs them.  Some of these mediators are important in controlling inflammation, stimulating healing, and protecting the body from infection. They are also involved in the production of histamine, which is a key factor in the body’s allergic response, substances that can cause inflammation, allergic reactions, and other responses in the body. These substances can also be involved in the development of autoimmune diseases, allergies, and even certain cancers.

Mast cells are also involved in the production of various hormones, including serotonin and cortisol. Serotonin is a neurotransmitter that is involved in mood regulation, while cortisol is a hormone that helps the body to regulate stress levels. Mast cells may also be involved in the regulation of blood pressure and the production of certain immune cells. When mast cells are over-activated, it can lead to an exaggerated response in the body and a wide range of symptoms, and through this link to hormones they can affect the heart rate/blood pressure and a cascade of other effect of the sympathetic nervous system including POTS (Postural Orthostatic Tachycardia Syndrome).  

Mast cells can also play a role in tissue repair, as they can produce growth factors that can help to promote the healing of damaged tissue. Mast cells can be involved in the repair of blood vessels, and they can also play a role in wound healing. Finally, mast cells can be involved in the production of enzymes that can help to regulate the body’s metabolism.

Mast cells can be activated to release mediators by a variety of triggers, including allergens, infections, and certain medications. When activated, mast cells can lead to symptoms such as skin rashes, itching, hives, runny nose, wheezing, and more. In some cases, over-activation of mast cells can lead to mast cell activation diseases/syndrome, which can cause a variety of symptoms.

Someone may suspect they have mast cell activation diseases (MCAS) if they experience a combination of any of the common symptoms (see infographic below). It is thought that between 17-20% (Afrin, 2023) of the world’s population has some sort of Mast Cell Activation problem, as it is thought to underlie asthma, dementia, irritable bowel syndrome, Hypermobile-Ehlers Danlos Syndrome, fibromyalgia, skin rashes, chronic fatigue syndrome, long covid as well as many other common conditions.  Unfortunately, the acceptance of MCAS in the medical community is still in its infancy and no education is offered for doctors in their training courses.

A mutation in the Kit gene can lead to the inappropriate production and release of subsets of mast cell mediators.  These mediators release into the blood stream and activate a series of cascades that present as inflammation, allergy and in some cases abnormalities of growth.

Symptoms in MCAS may include skin rash or flushing, itching or hives, runny nose or congestion, abdominal cramping or vomiting, diarrhea or constipation, dizziness or fainting, shortness of breath or wheezing, facial swelling, joint pain or swelling, headaches, palpitations or irregular heart rate, excessive fatigue, anxiety or panic attacks, cognitive impairment or memory loss, weight loss or gain, night sweats, fever, hair loss, and unexplained bruising or bleeding.

If you experience any of these symptoms, it is important to speak with a healthcare professional to discuss further testing and treatment options.

Due to the lack of very clear blood tests to identify MCAS, it remains a condition that is poorly understood or accepted by a lot of the medical profession.

Diagnosis of MCAS remains difficult and is often a clinical diagnosis based on symptoms which depends a great deal on who is conducting the assessment.  Definitive diagnosis can be obtained through microscopic analysis of gastrointestinal tissue taken during an endoscopy.  If you have had an endoscopy in the past, it is worth checking as some collected cells are stored for 5-10 years, therefore testing can be completed on cells that were collected years before.  Cells collected during endoscopy can be tested with the CD117 stain to look for excessive mast cells.  This can be organised by a medical practitioner.

Other tests are becoming available in Australia now.  The problem with blood testing to this point is that it has not been collected, stored, and analysed in an environment that has kept the mediators from breaking down prior to the test being completed ie they need to be collected and transported cold.  Elevated heparin can be demonstrated in approx 80% of MCAS clients – but it has a half-life of 1 minute unless refrigerated immediately! This means that the heparin will break down in the sample if left at room temperature for more than one minute. This has made the collection and analysis of heparin in Australian very tricky.

The most effective treatment for mast cell activation syndrome (MCAS) is to manage the underlying cause or environmental irritant.  This takes some detective work to figure out if there are any environmental stressors/irritants. 

Keeping a diary to track symptoms, foods consumed and products used, can be useful in ascertaining your environmental irritants.

Once a potential allergen has been identified, trying to decrease the exposure to this is essential.  Consulting a dietician to trial a low FODMAP or low histamine diet is essential if you are concerned about food reactions. This website can be helpful to find foods that adhere to certain allergies and diet types https://www.whatthebleepcanieat.com. But it highly recommended that you consult a qualified and experienced dietician before you start on any dietary restrictions.

Medications can be used to treat mast cell activation syndrome (MCAS). Antihistamines can help reduce symptoms, but other medications may be helpful.

Over the counter anti-histamines such as Telfast, Clarytine and Zyrtec can be trialled with the assistance of your pharmacist/GP and each works slightly differently so Dr. Afrin ( a medical specialist with an interest in this field) suggests you try each one at a time for two weeks and note which one has the best effect.  With medical assistance often a dosage of twice per day can be trialled. These are the first line as such and are the H1 blockers.

Once the best H1 blocker for you has been found, then Dr. Afrin suggested, to stay on the H1 blocker and try the H2 blockers (eg Famodine/nizatidine etc) one at a time and see what works best for you.

A third line of management, “Mast cell stabilizers” can help to prevent mast cell over-activation, while leukotriene receptor antagonists (eg singular/montelukas) can help reduce inflammation caused by leukotrienes. Compounded medication including Ketotifen or sodium cromoglycate can also be helpful for some people.  It is important to speak with a healthcare professional to determine the best medication for your individual needs.

The final line of defence is a monoclonal antibody injection knows as omalizumab (or Zolair) but these are only covered by medicare for severe cases of hives and asthma. It is essential to discuss any of these managements with you GP or specialist and some article references are included at the end if you need to provide educational material to your health professionals.

Depending on the individual, management also involves lifestyle modifications, dietary change (avoiding processed food and low histamine diet), improving sleep, psychological support, movement/exercise, and a sense of belonging (support groups and family/friend support).

Other treatments may include supportive therapies such as physiotherapy, acupuncture, and psychotherapy.

Physiotherapy can be an effective treatment for mast cell activation syndrome (MCAS). Physiotherapy can help to reduce inflammation, improve range of motion, and manage pain. When combined with other treatments, such as medications and lifestyle modifications, physiotherapy can help to improve overall wellbeing and quality of life. Physiotherapy can also help to maintain and improve muscle strength, flexibility, balance, coordination, and endurance. Finally, physiotherapy can help to reduce fatigue and stress, which can help to manage MCAS symptoms.

It is important to note that everyone’s treatment plan will be unique, depending on their specific needs. It is important to consult with a healthcare professional to determine the best treatment plan for your own needs. Additionally, it is important to stay informed about the latest research and treatments for MCAS to ensure you are receiving the best possible care.

This over-activation leads to a wide range of symptoms, including dizziness, fatigue, palpitations, headaches, and more. Hypermobile Ehlers-Danlos Syndrome is also related to mast cell activation diseases because those with the condition often experience an increase in mast cell activity, which can lead to a variety of symptoms. Living with these conditions can be managed with lifestyle modifications, medications, and other treatments by health professionals interested in these areas.

References:

Afrin LB, Ackerley MB, Bluestein LS, Brewer JH, Brook JB, Buchanan AD, Cuni JR, Davey WP, Dempsey TT, Dorff SR, Dubravec MS, Guggenheim AG, Hindman KJ, Hoffman B, Kaufman DL, Kratzer SJ, Lee TM, Marantz MS, Maxwell AJ, McCann KK, McKee DL, Menk Otto L, Pace LA, Perkins DD, Radovsky L, Raleigh MS, Rapaport SA, Reinhold EJ, Renneker ML, Robinson WA, Roland AM, Rosenbloom ES, Rowe PC, Ruhoy IS, Saperstein DS, Schlosser DA, Schofield JR, Settle JE, Weinstock LB, Wengenroth M, Westaway M, Xi SC, Molderings GJ. Diagnosis of mast cell activation syndrome: a global “consensus-2“. Diagnosis (Berl). 2020 Apr 22;8(2):137-152. doi: 10.1515/dx-2020-0005. PMID: 32324159.

Afrin, L.  Presentations at the Mast Cell Activation Disease Conference: Current Concepts.  Brisbane, Australia (March, 2023)

Kohn A, Chang C. The Relationship Between Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS). Clin Rev Allergy Immunol. 2020 Jun;58(3):273-297. doi: 10.1007/s12016-019-08755-8. PMID: 31267471.

Seneviratne, SL, Maitland, A, Afrin, L. 2017. Mast cell disorders in Ehlers–Danlos syndrome. Am J Med Genet Part C Semin Med Genet 175C: 226– 236.

Weinstock LB, Pace LA, Rezaie A, Afrin LB, Molderings GJ. Mast Cell Activation Syndrome: A Primer for the Gastroenterologist. Dig Dis Sci. 2021 Apr;66(4):965-982. doi: 10.1007/s10620-020-06264-9. Epub 2020 Apr 23. PMID: 32328892.

Postural Orthostatic Tachycardia Syndrome

Posted on by Sharon Hennessey

Postural Orthostatic Tachycardia Syndrome

Our blog today will focus on one of the most commonly co-occuring issues with symptomatic hypermobility –Postural Orthostatic Tachycardia Syndrome (POTS).  POTS (which is a type of dysautonomia) is currently getting increased research attention as it is thought it is being responsible for many symptoms of long COVID.
The extra give in ligaments in hypermobility, is believed to be due to a higher proportion of a stretchier type of normal collagen.  Collagen is present in connective tissues throughout the body.  Therefore, it is possible to have associated problems associated with hypermobility including gut issues, fatigue and dizziness. 
In the literature, it is suggested that with those who live with Hypermobile -Ehlers Danlos Syndrome the incidence of POTS is reported as high as 88%.   POTS symptoms most commonly are reported as fatigue, dizziness, brain fog, racing heart and palpitations.  But POTS symptoms can include any combination of the following:

 

Everyone with POTS has a different combination of symptoms and these symptoms can be explained by many other issues so it is important individuals discuss with their GP for assessment and evaluation of any underlying conditions and for accurate diagnosis.

Understanding POTS

To understand what POTS is we need to have a look at how the body maintains it body processes as you move around.  The body has many processes that it controls automatically (without any conscious thought or thought from your brain).  Homeostasis, is the self-regulating process by which biological systems tend to maintain stability while adjusting to conditions that are optimal for survival.  The body aims to maintain homeostasis and maintaining the blood pressure at a normal level is essential for this.

Blood pressure can be affected by how fast your heart beats (heart rate) and blood going into your heart (venous return) as shown in the formula below. 

Blood pressure = Heart Rate x Venous Return.

When lying down, your body can relax and pump blood around with minimal effort.  Once the body changes quickly from lying to sitting or standing (like when getting out of bed in the morning) blood can pool (stay) in the legs and arms.  This means there is less blood for the heart to pump around.  If your blood pressure drops too quickly you would faint (vasovagal syncope), so to make sure your blood pressure does not drop, your body releases hormones (adrenalin) to increase your heart rate to increase blood pressure.

In people with hypermobility spectrum disorder or hypermobile -Ehlers Danlos syndrome, just like their joints, their blood vessels have extra stretch which means more blood can pool in the legs when they stand up. With less blood available (less blood returning to the heart because it is pooling in the legs) the body increases the heart rate to avoid dropping the blood pressure which in extreme circumstance could cause fainting.

To increase the heart rate the body makes the heart beat faster via activation of the Sympathetic Nervous System ($NS) which is also known as the fight-flight system (SNS).  As well as increasing the heart rate there are a raft of associated symptoms associated with this which can account for many of the symptoms listed in the table above.

For adults to be considered with POTS, the heart rate needs to go up by >30 bpm from lying to standing still. Additionally, if your heart rate when laying still is more than 120bpm, this can also indicate POTS. For children, the heart rate needs to be >40bpm. 

You can do testing for POTS and other dysautonomia in your own home.  Your physiotherapist can supply you with more detailed documentation on how to record this.  

Common investigations include; blood tests, ECG, heart echo, Holter monitor of blood pressure and/or heart rate, tilt table testing and cardiologist assessment.  Tilt table testing is not always necessary and the nasa lean test can be easily completed without fancy equipment.



What can I do to help my POTS symptoms?

  • Increase fluid intake – More than 2L/ day or 8-10 cups/day (must be in combination with extra salt intake). Extra fluid means extra blood!

 

  • Increase salt intake – Without salt, all that extra fluid will not stay in your body. If you have a family/personal history of high blood pressure, heat or kidney diseases or concerned about risk factors of salt intake, please discuss this with your doctor.

 

  • Compression garments– prevent blood pooling in the legs. There are many options like sports socks/ TEDS, Skins or cheaper alternatives from Aldi/ Target. Full tights or bike pants options available.

 

  • Resting in positions to improve symptoms for short periods – sitting with knees bent up can encourage blood flow to return to the heart and decrease symptoms of POTS. Lying can also relieve POTS symptoms but too much rest can add to de-conditioning which can worsen POTS symptoms in the long term.

 

  • Exercise
    • Exercises you can do lying or sitting can be easier than standing.
    • Pumping/wiggling feet and legs can help pump blood back to your heart.
    • Try not to stand in the one spot – wriggle and move your position from side to side.
    • Cardiovascular exercise can improve symptoms in many people with POTS but they need to be paced and appropriate to avoid flare up of fatigue or painful symptoms.
    • Not Just Bendy Hypermobility Services Physiotherapists can help you develop an exercise program that is tailored to you.

 

  • Medications
    • You can discuss with your GP or cardiac specialist which medications may help
    • If your symptoms are affecting your ability to function then it is worth considering review by an electrophysiological cardiologist.

References:

Brock, I., Chopra, P., Maitland, A., & Francomano, C. (2021). Frequency and co-occurrence of comorbidities in the Ehlers-Danlos syndromes. Molecular Genetics and Metabolism 132S1, S59-S198.

Raj SR. Postural tachycardia syndrome (POTS). Circulation. 2013 Jun 11;127(23):2336-42.

Hakim A, O’Callaghan C, De Wandele I,  Stiles L, Pocinki A and Rowe P (2017) Cardiovascular autonomic dysfunction in Ehlers–Danlos syndrome—Hypermobile type  American Journal of Medical Genetics Part C: Seminars in Medical Genetics 175C: 168 -174

Switching on the Lightbulb to See Hypermobility Disorders

Posted on by Sharon Hennessey

In 2022, a group of interested physiotherapists and exercise physiologists decided to increase awareness of hypermobility disorders within the physiotherapy profession. Read more about the hypermobility disorder advocacy group and their plans here: https://www.hypermobilityconnect.com/hypermobility-lectures/

Not Just Bendy Hypermobility Services founder, Sharon Hennessey, presented a zoom webinar titled “Hypermobility: its types and its management” to a group of close to 500 physiotherapist and other health professionals.

In-motion magazine (the monthly magazine printed by the Australian Physiotherapy Associate for all of its members) included a 6 page article to try to make physios think about hypermobility when looking at their clients.

The article has been reproduced here in a series of images Switching on the Lightbulb to see Hypermobility Disorders:

Sharon Hennessey is very passionate about the importance of recognition/diagnosis of hypermobility disorders and here is a selection, from the article, where she explains why she believes this is essential.

“In recently published Masterclass in Hypermobility, internationally renowned physiotherapist, Jane Simmons states, “Early recognition and treatment of hypermobility related disorders is key to effective management.” 

Sharon Hennessey, is also adamant, stating, “Just because it is common – does not mean it should be ignored. Obesity is common. Depression is common, but clients are offered appropriate medical care for these issues. Hypermobility should be given the same respect. It isn’t simply chronic pain that is experienced by these clients, there are additionally frequent acute and sub-acute local tissue issues that are still healing, often wrapped up in a package of sensory sensitisation.”  

Earlier in her career, Sharon had a 17-year-old client (BB) who was referred for lateral hip pain. On the first appointment, she seemed a little distant and laughed when talking about her pain, saying, “I am just weird.” BB had seen multiple physios throughout her life and was often discharged due to failure to progress. BB was very intelligent, in in her first term of Occupational Therapy, but was struggling with her workload, suffering with fatigue, dizziness and pain flare ups. 

On deeper probing Sharon found out that: 

  • BB was falling weekly due to her ankles giving way or sometimes due to black outs.  
  • She had fractured both her wrist and fibula in the last 6 months.   
  • She had failed an adolescent pain clinic and had CRPS in her elbow from a previous injury while at high school.   
  • She complained of gut pain and had difficulty maintaining her weight.   
  • Beighton score: 9/9 
  • 5-Part Questionnaire for Hypermobility Score: 3/5 

Sharon put together her issues and recognised her Hypermobility Spectrum Disorder. 

Despite doing her exercises, eight weeks later, BB did not progress with her control of her one leg balance and she did not report any reduction in pain levels.  This is not unusual with clients with hypermobility, so treatment continued, and she made significant gains but over a much longer period than would have been expected with a regular client.  Letters were sent to her GP as well as a session with her family to explain HSD.  The multidisciplinary team became involved including psychology, dietetics, podiatry, cardiology and genetics (for h-EDS assessment) as well as a weekly clinical Pilates class.   

BB’s progress often hit roadblocks including an ankle stabilisation (with CRPS complication), her passing out in the clinic from malnutrition (due to gastroparesis) and insertion of a PEG (for supplemental feeds).  But the rewards for working with BB long term have been enormous including see her self-worth build when she got her official H-eds diagnosis, seeing her graduate from university and successfully work full time as an occupational therapist. 

The average time between onset of symptoms and diagnosis with a hypermobility disorder is 10 years. 80-90% of hEDS and HSD clients first present with pain.  Our group would love the time between onset of symptoms to diagnosis to be shorter. Will you be a part of that change? “

There is still opportunity to attend the remaining 4 lectures planned by the Hypermobility Disorder Advocacy Group. Full details are available here: https://www.hypermobilityconnect.com/hypermobility-lectures/

They are on the following topics and how they related and how they are influenced by hypermobility disorders:

  • Pain
  • Paediatrics
  • Women’s Health
  • Fatigue and Dysautonomia/POTS

References: 

  • The Ehlers Danlos Society https://www.ehlers-danlos.com/ 
  • Diagnostic Criteria for Hypermobile Ehlers-Danlos Syndrome (hEDS) https://ehlers-danlos.com/wp-content/uploads/hEDS-Dx-Criteria-checklist-1.pdf 
  • Tinkle B, Castori M, Berglund B, et al. Hypermobile Ehlers-Danlos syndrome (a.k.a. Ehlers-Danlos syndrome Type III and Ehlers-Danlos syndrome hypermobility type): clinical description and natural history. Am J Med Genet C Semin Med Genet. 2017; 175:48–69. 
  • Castori M, Tinkle B, Levy H, Grahame R, Malfait F, Hakim A. A framework for the classification of joint hypermobility and related conditions. Am J Med Genet C Semin Med Genet. 2017; 175:148–157. 
  • Kumar,B. Lenert, P. Joint Hypermobility Syndrome: Recognizing a Commonly Overlooked Cause of Chronic Pain, American Journal of Medicine. VOLUME 130, Issue 6 https://doi.org/10.1016/j.amjmed.2017.02.013 
  • Malfait F, Francomano C, Byers P, Belmont J, Berglund B, Black J, Bloom L, Bowen JM, Brady AF, Burrows NP, Castori M, Cohen H, Colombi M, Demirdas S, De Backer J, De Paepe A, FournelGigleux S, Frank M, Ghali N, Giunta C, Grahame R, Hakim A, Jeunemaitre X, Johnson D, Juul-Kristensen B, Kapferer-Seebacher I, Kazkaz H, Kosho T, Lavallee ME, Levy H, Mendoza-Londono R, Pepin M, Pope FM, Reinstein E, Robert L, Rohrbach M, Sanders L, Sobey GJ, Van Damme T, Vandersteen A, van Mourik C, Voermans N, Wheeldon N, Zschocke J, Tinkle B (2017) The 2017 international classification of the Ehlers-Danlos syndromes. Am J Med Genet C: Semin Med Genet 175(1):8–26. https://doi.org/ 10.1002/ajmg.c.31552 
  • Jane V. Simmonds, Advances in assessment of hypermobility-related disorders, American Journal of Medical Genetics Seminars in Medical Genetics, Part C (IF3.908), Pub Date: 2021-11-06, DOI: 10.1002/ajmg.c.31943 
  • J.V. Simmonds, Masterclass: Hypermobility and hypermobility related disorders, Musculoskeletal Science and Practice, Volume 57, 2022, ISSN 2468-7812, https://doi.org/10.1016/j.msksp.2021.1024 

Telehealth Physiotherapy for Hypermobility

Posted on by Sharon Hennessey

 

The team at Not Just Bendy provide the option of Telehealth physiotherapy for hypermobility in place of, or in addition to traditional face to face services. Telehealth services have been greatly beneficial in aiding people who have hypermobility and Ehlers-Danlos syndrome to access our care from all around Australia, from within the comforts of their own homes. Telehealth Physiotherapy services have been shown to be just as effective as in-person therapy, and takes place either via an online video platform (e.g. Zoom), or by telephone.

This provides the opportunity for:

  • The ability to stay home but still access therapy if you are immunocompromised or fearful of heading out during the ongoing covid-19 situation.
  • Improved access to our team of physiotherapists who have a special interest and holistic approach in managing hypermobility / Ehlers-Danlos Syndrome
  • A comprehensive dialogue surrounding your main concerns, and helping you piece together a better understanding of how your hypermobility contributes to a raft of symptoms including gut disturbances, pain, POTS, etc, and advising you on how to manage them 
  • A physical assessment looking at your posture and quality of movement through various functional tasks 
  • Crafting a holistic management plan including a detailed and specific home exercise program via an online exercise platform accessible via computer or phone app (Physitrack)
  • Liaising with your local health practitioners if you live remotely, for better coordination and tailoring of your medical care
  • Reduced travel time and cost
  • The opportunity to continue to have your rehabilitation program monitored and progressed regardless of the health status of yourself and your close contacts

What research is there to support the use of telehealth?

  • Telerehabilitation as a means of allied health and medical service delivery has been utilized around the world prior to the Covid-19 pandemic. Since its inception, research has shown that telerehabilitation is just as effective as traditional rehabilitation methods in achieving gains in function and pain reduction for people with musculoskeletal conditions (Cottrell et al., 2017).
  • This benefit extends to the use of telehealth platforms to conduct exercise therapy in adults with a variety of physical disabilities, including cardiopulmonary, neurological, respiratory, and orthopaedic conditions. In a systemic review conducted by Dias et al. (2021), adults with a range of physical disabilities showed similar short- and long-term gains in pain, function and quality of life when participants underwent exercise therapy via telerehabilitation compared with other forms of rehabilitation.
  • In the middle-aged population with chronic diseases such as diabetes, irritable bowel syndrome, heart failure and COPD, the evidence for telerehabilitation to conduct patient education and teach management strategies was mostly favourable when compared to standard traditional care (Rush et al., 2018). However, results were slightly mixed partly due to the broad spectrum of telerehabilitation platforms employed (telephone consultations, video platforms, live chat websites, online lectures etc) in different studies, and a limited number of studies available for data comparison.
  • Emerging data compiled by de Mata et al. (2021) has shown promising results in re-training pelvic floor muscles and reducing symptoms of stress and urge urinary incontinence in adult females using online education software and videoconferencing platforms. These benefits were seen after just 4 months and lasted for at least 2 years post-treatment.
  • A recent study conducted over the COVID-19 pandemic showed that a twice weekly video-based telehealth low impact, moderate intensity aerobic exercise program for women diagnosed with Fibromyalgia, conducted over a 4-month period, resulted in improvements in anxiety and depression levels, pain levels, and less mechanical sensitivity to pain when compared to the control group who did not participate in exercise (Hernando-Garijo et al., 2021).

Real stories from our clients

The following is from Vanessa S., a Not Just Bendy Hypermobility Services physiotherapy telehealth client:

 

Vanessa S. and family. Vanessa is a Not Just Bendy Hypermobility Services physiotherapy telehealth client
Vanessa S. and family

As a 35-year-old-woman with hypermobility and living in remote Queensland, I have found accessing telehealth for physiotherapy invaluable.  This year has posed many challenges for everyone, however for our family the challenges felt rather extreme. In addition to 7 surgical procedures for various conditions in Brisbane, I experienced 9 hospital admissions in Brisbane where I required specialist care. This care was not accessible from Warwick, our home that I share with my husband and two-year-old son. The road from Brisbane to Warwick after each hospitalisation was long and windy, both metaphorically and literally. However the main challenge was being able to access the specialist allied health services I required.

This is where the telehealth services from Not Just Bendy Hypermobility Services were priceless.  I was able to continue my physical rehabilitation program from home.  Our sessions looked very different from in the physiotherapist rooms at her practice.  Instead of my physio observing my posture and body positioning in her rooms, I would balance the laptop on the ironing board, and demonstrate my exercises in the lounge. 

Sessions at home through telehealth were both practical (in that I couldn’t drive to Brisbane due to pain medication, nor did I have the strength and stamina for that amount of time in the car) and effective.  Our sessions were followed through with a home-based exercise program utilising an app on my phone.  This included prescribed exercises with a video demonstration and audio instructions. Using the app, I could also document comments for each exercise, what worked well and what didn’t.

Whilst I would love to have access to my physio in my living room every night to give me guidance, utilising telehealth in conjunction with the specific physical rehabilitation exercises prescribed is the next best thing.  For us, telehealth provide access to a service that otherwise wasn’t accessible, due to living in rural Queensland.  [FL1] 

Frequently Asked Questions:

What if I need hands on physiotherapy treatment?

Sometimes, hands on therapy is useful in alleviating muscular pain. We can teach you techniques to release soft tissue tension by yourself using trigger point balls, foam rollers, and hand-held massagers. Some of our clients (from regional areas) visit us when they are in Brisbane seeing other specialists.  For other clients we assist with finding a local physio to co-treat with or have discussions with their existing local team members to ensure that the treatment being delivered is hypermobility friendly.

What kinds of health rebates are available if I choose to do a Telehealth Physiotherapy for hypermobility consultation?

Telehealth physiotherapy services are currently recognized and rebated by:

  • Various private heath funds
  • NDIS
  • DVA
  • Queensland WorkCover / SIRA
  • Medicare rebated chronic disease management plan sessions

Am I able to have telehealth for Not Just Bendy Hypermobility Services Exercise Physiologist?

Yes you can – we have appointments with our exercise physiologist available.  Rebates apply for all services listed above but we recommend you contact your private health fund for clarification as some do not support telehealth with an exercise physiologist.

I am not sure if I have hypermobility – where can I learn more about this?

This blog is a great introduction for you if you are only beginning your journey.

Bibliography

Cottrell, M. A., Galea, O. A., O’Leary, S. P., Hill, A. J., & Russell, T. G. (2017). Real-time telerehabilitation for the treatment of musculoskeletal conditions is effective and comparable to standard practice: a systematic review and meta-analysis. Clinical rehabilitation, 31(5), 625–638. https://doi.org/10.1177/0269215516645148

da Mata, K., Costa, R., Carbone, É., Gimenez, M. M., Bortolini, M., Castro, R. A., & Fitz, F. F. (2021). Telehealth in the rehabilitation of female pelvic floor dysfunction: a systematic literature review. International urogynecology journal, 32(2), 249–259. https://doi.org/10.1007/s00192-020-04588-8

Dias, J. F., Oliveira, V. C., Borges, P., Dutra, F., Mancini, M. C., Kirkwood, R. N., Resende, R. A., & Sampaio, R. F. (2021). Effectiveness of exercises by telerehabilitation on pain, physical function and quality of life in people with physical disabilities: a systematic review of randomised controlled trials with GRADE recommendations. British journal of sports medicine, 55(3), 155–162. https://doi.org/10.1136/bjsports-2019-101375

Hernando-Garijo, I., Ceballos-Laita, L., Mingo-Gómez, M. T., Medrano-de-la-Fuente, R., Estébanez-de-Miguel, E., Martínez-Pérez, M. N., & Jiménez-Del-Barrio, S. (2021). Immediate Effects of a Telerehabilitation Program Based on Aerobic Exercise in Women with Fibromyalgia. International journal of environmental research and public health, 18(4), 2075. https://doi.org/10.3390/ijerph18042075

Rush, K. L., Hatt, L., Janke, R., Burton, L., Ferrier, M., & Tetrault, M. (2018). The efficacy of telehealth delivered educational approaches for patients with chronic diseases: A systematic review. Patient education and counseling, 101(8), 1310–1321. https://doi.org/10.1016/j.pec.2018.02.006

Zebby: Not Just Bendy Hypermobility Mascot

Posted on by Sharon Hennessey

This is the story of the Not Just Bendy Hypermobility Mascot and Logo.

Zebras are the adopted symbol of Ehlers-Danlos Syndrome (EDS).  The story goes that at medical school, future doctors are taught to look for conventional explanations: “If you hear hoof beats look for horses.”

This communicates the idea that common symptoms are usually due to the most common explanation.

The zebra represents more rare conditions (such as EDS) and the idea that “When you hear hoof beats, if you only think of horses, you will be missing the zebras.”

Zebby, the Not Just Bendy Hypermobility Services Mascot
Zebby, the Not Just Bendy Hypermobility Services Mascot

It encourages the medical community to think outside the box, and consider EDS/connective tissue disorders as a possible underlying diagnosis

It is also described in the famous EDS slogan:

“If you can’t connect the issues, think connective tissues.”

Now regardless of whether we consider hypermobile-EDS “rare”, the Zebra has stuck as the mascot of the movement.  The mascot for Not Just Bendy Hypermobility services is the lovable Zebby, created by the artist Chloe Wigg.

The original Zebby was the first zebra I bought as an adult, and still sits on the desk watching me write this blog.  I bought him when I first began to feel connected to the EDS community – firstly as a “bendy” myself, secondly as the mother of some, and finally as a physiotherapist to many.

Next, Zebby became art.

Chloe Wigg (who is a client of mine) asked to paint my portrait for a competition on “influential people of Brisbane.”  Portrait painting is not Chloe’s usual creative category. Recently her preferred genre is acrylic medium pouring painting; she struggles with more traditional painting formats due to her own H-EDS. 

Chloe Wigg in her studio
Chloe Wigg in her studio

In exciting upcoming news, Chloe is holding her first solo art show “Natural Resilience” from 19th January 2021 at Logan Art Gallery.


A little more info about Chloe.

She took up art as therapy after a career-ending arm injury when she was a young paramedic. She took up art while having rehabilitation in hospital as a way to cope with crippling pain: often referred to as Art Therapy. 

When I met Chloe, she knew she was hypermobile, but had never heard of the complexity of it all. Over time we began to deal with many of her issues associated with that hypermobility. Despite all the challenges Chloe has faced she always remains positive, and a ray of happiness for those around her.  I am so proud of her for continuing with her art, raising her family, and remaining so positive about whatever is around the corner. 

To support Chloe you can follow her blog, Facebook or Instagram. Or if you see/hear her in the waiting room – please introduce yourself as she loves making connections.

Original Zebby in inks by Chloe WIgg
Original Zebby. Watercolour on Rag by Chloe WIgg

Anyway, let’s say the portrait was never entered in the competition, but a cute little Zebby in the corner became legend (see above).  It is the combination of Zebby and the zebra patterned hand that together signify the goals of the Not Just Bendy Hypermobility Services. Cradling the zebra with our hands and helping support and help anyone with hypermobility.

Zebby was then redrawn, and developed into vector art to be the official logo for Not Just Bendy Hypermobility Services.

But it turned out he was just too cute to be on our cards and letterheads especially as we are an adult physiotherapy service, and most of the people I asked didn’t understand the Zebra reference anyway (even those with EDS). It broke my heart to figuratively go back to the drawing board (and literally send Chloe back to her drawing board) and find a different image to represent Not Just Bendy but as I have discovered over the last six months there were many tricky business decisions to make every week.

Chloe was not discouraged and sketched us a new image based on the zebra patterned hand from the original painting. On the third go she produced the drawing that was turned into our logo.

Not Just Bendy Hypermobility Services Logo
Not Just Bendy Hypermobility Services Logo

I love our logo – it signifies,to me, someone who is moving happily but is also finding it hard to keep their head, body, and legs all connected.  Just like Chloe and so many of my other clients who also inspire me on a daily basis. The overlapping purple, blue, and green coloured body parts signify the multiple layers of muscle that need to co-ordinate their activation patterns to allow functional, efficient and pain-free movement. It also reminds me of maintaining alignment while standing on one leg (which most of my clients know is much more difficult than you would think).

Read more about Chloe Wigg: How art saved her life https://alistrachan.com/feature-artist-chloe-wigg-how-art-saved-her-life/

To learn more about Not Just Bendy Hypermobility Services you can read about us here.

Hypermobility Brisbane Physiotherapy

Posted on by Sharon Hennessey
Not Just Bendy Hypermobility Services is a physiotherapy service dedicated to Hypermobility Brisbane
Not Just Bendy Hypermobility Services is a physiotherapy service dedicated to Hypermobility Brisbane

When I meet people socially at a BBQ and they ask me what I do, I take a deep breath as I know it is going to be an interesting conversation.  I am the founder of a physiotherapy practice in Brisbane called Not Just Bendy Hypermobility Services.  All our physiotherapists have a special interest in complex hypermobility, including Hypermobile-Ehlers Danlos Syndrome and Hypermobility Spectrum Disorder – some of them even have these conditions themselves.

I would like to answer a few common questions I am asked socially about hypermobility and by the end of the article you will understand why the practice is called Not Just Bendy Hypermobility Services.

What is hypermobility?

The term hypermobility is used to describe a person who has more than the usual amount of movement in a joint.  This is present in around 20% of the population.  For many people having increased joint flexibility is an advantage for some sports including swimming, tennis and gymnastics.

Collagen is the building block of connective tissue and there are several different types of collagen – some are firmer and some types are stretchier (similar to how different types of rubber bands have different stretchiness).  It is thought that hypermobile individuals have a higher proportion of the stretchier collagen in their ligaments.  This can allow the joints to move through an increased range of motion.

Hypermobility is generally assessed with the Beighton Criteria, which is explained here:

Beighton Criteria for assessment of hypermobility used at Not Just Bendy Hypermobility Services

If you are an adult and you score 5 or higher then you are considered hypermobile – for children it is 6 or higher.  It is important to remember that not everyone with hypermobility will have issues because of it – in fact many of our Olympic swimmers and track & field athletes are hypermobile.   

Some of those with hypermobility encounter pain and injury associated with increased movement and if this pain becomes long lasting and in multiple areas then they can be diagnosed with Hypermobility Spectrum disorder.  As the name suggests it is a spectrum from generally coping with a normal lifestyle with occasional pain to quite severely affected. 

Connective tissue/collagen is not only present in your joints/ligaments but also in many other parts of the body. This is why, other issues can be associated with hypermobility. Issues can include: digestive issues (IBS, reflux, constipation, nausea, bloating etc), circulatory issues (dizziness, brain fog, racing heart, fainting), sleep issues, anxiety/depression, bladder issues (frequency, loss of urine), hormonal issues (painful/heavy periods, endometriosis), frequent bruising, stretch marks and clumsiness.

When there is a family history and other specific characteristics then a medical specialist can diagnose Hypermobile-Ehlers Danlos Syndrome https://www.ehlers-danlos.com/eds-diagnostics/.  Incidence of Hypermobile-Ehlers Danlos Syndrome is estimated to be as high as 1% of the population. 

Yet despite this, Hypermobility Spectrum Disorder and Hypermobile-Ehlers Danlos Syndrome are both generally poorly managed and poorly diagnosed even in Australia.

If hypermobility is so common why should we care?  If it is that common and normal why should we bother to do anything about it anyway? 

My answer to that question is – heart disease and diabetes are very common – but we don’t ignore those conditions.  Prevention and management are offered to those with heart disease and diabetes and in the same way those with Hypermobility Spectrum Disorder / Hypermobile-Ehlers Danlos Syndrome deserve fast diagnosis, understanding and management.

At Not Just Bendy Hypermobility Services in Brisbane, Australia, we receive referrals from medical specialists who have recognised that hypermobility should be assessed and managed.  This include Rheumatologists, Geneticists, Cardiologists, GPs, Sports Physicians and Pain Specialists.  We also see many patients that find us through online support groups and google searches.  With our new patients we do a specific screening assessment to assess if hypermobility is present (or was present in the past) and screen for and explain the theorised linkages to some other common conditions.

We then explain why all these things seem to occur together with hypermobility.  It is one of the proudest parts of my life – when I help to put all the pieces of the puzzle together for people.  It is a really significant moment for many and I must admit sometimes a get a chill down my spine when the penny drops for them.  Then together we can start to put a plan together on how to approach things going forward.

Back at the BBQ by now the chat has gone one of two ways – either my companions eyes have glazed over and they are trying to get away from me or the penny has dropped for them and they say “That’s just like me,” or “That’s just like my sister/mother/friend.” Who knows? Maybe the same thing has happened to you.

What can physiotherapy do to help those with Hypermobility Spectrum Disorder / Hypermobile-Ehlers Danlos Syndrome?

I am glad you asked this!  There is so much that a physiotherapist that understands hypermobility can offer.  Even though the ligaments are a little extra stretchy, we all have another wonderful system known as Muscles which support the joints and provide stability and support to the deeper ligaments.  Muscles are the key to management/improvement with Hypermobility Spectrum Disorder/Hypermobile-Ehlers Danlos Syndrome.

I will list a few things we provide at Not Just Bendy Hypermobility Services:

  • Pain management techniques including safe stretches, postural changes, and massage gadgets.
  • Deeper “stability/postural” muscle retraining to reinforce the ligaments and provide support to the joints.
  • Retraining of simple movements such as getting out of a chair, standing, walking and balancing on one foot to use more efficient postural patterns.  Hypermobile individuals often use excessive muscle gripping/stiffness to hold themselves rigid which can actually be very tiring and may increase pain.  Learning to use the right muscles for the right task can be challenging but worthwhile.
  • Strength and conditioning training including modified pilates and the development of safe, paced, gym-based programs.
  • Problem solving of complex conditions and coordination with other medical professionals with a special interest in the area.
  • Assistance with dislocation plans, correspondence to school, pacing advice, joint protection education and brace/taping advice.

Due to the complexity of each individual with Hypermobile-Ehlers Danlos Syndrome it is important to take a long-term view of rehabilitation.  We are available for regular review or less frequent treatment, as everyone’s circumstances are unique.  We prefer to start with two one-hour sessions for a full assessment and to develop a management plan. Most of our clients are complex and have seen multiple physios/medical professionals in the past.  We offer telehealth for patients across Australia and home visits for those in Brisbane. 

When you call Not Just Bendy Hypermobility Services to make an appointment ask to see one of the growing Not Just Bendy team – Sharon Hennessey, Dr X. Chen, Marlisa Kwan, Belinda Breust, Lucy Yan, April Meggs, Maria Yee and Elissa Mak. Our practice is located in Eight Mile Plains, Brisbane. Be sure to ask for Not Just Bendy when you are booking your appointment for hypermobility Brisbane. Contact Us.

Follow us on facebook: https://facebook.com/notjustbendy

Sharon Hennessey Hypermobility Physio

This blog was written by Sharon Hennessey, the founder and principal physiotherapist at Not Just Bendy Hypermobility Services Physiotherapy clinic in Brisbane, Australia.  Sharon is a dynamic Physiotherapist with over 23 years’ experience and a special interest in treating those with hypermobility. 

Welcome Not Just Bendy Hypermobility Services

Posted on by Sharon Hennessey

It is time to welcome to the world – Not Just Bendy Hypermobility Services. Located in Brisbane, Not Just Bendy Hypermobility Services, is an expansion of the high quality, consistent service that physiotherapist Sharon Hennessey has provided to those with hypermobility over the last ten years.  It is located within the PhysioTec physiotherapy practice. [2022 Update: we are now located inside our own brand new, purpose built facility]

Hypermobility physiotherapists Sharon Hennessey, Dr X.Chen & Marlisa Kwan
Hypermobility physiotherapists Sharon Hennessey, Dr X.Chen & Marlisa Kwan

As medical engagement and understanding about connective tissues issues is improving there have been a large amount of people diagnosed with hypermobile- Ehlers-Danlos syndrome and generalised hypermobility syndrome. What was once thought to be a rare condition is perhaps a lot more common than previously thought.

Not Just Bendy has been established by Sharon Hennessey to respond to this avalanche of people (mostly women) searching for therapists who will work with them collaterally, without blame or judgement.

Joining Sharon’s team are physiotherapists Dr X.Chen and new staff member Marlisa Kwan. The goal is to provide physiotherapy assessment, advice, exercises and services for those with complex needs associated with generalised hypermobility and the Ehlers-Danlos syndromes.

Be assured that these changes will improve our patient care and allow us to focus on delivering high quality care in a variety of settings including in-rooms, telehealth (online) and consultations in your own home (home visits).

Not Just Bendy Brand personality

Your Not Just Bendy physiotherapists will let you know if you require input from other physiotherapy specialties and also recommend other allied health practitioners and specialist doctors. We believe strongly in multi-disciplinary care and have spent years in Brisbane developing relationships with these other professionals with an interest and understanding in hypermobility.

As our name suggests we know that hypermobility is Not Just being Bendy. And we want to make your life more than just being bendy too. Learn more about hypermobility here.

To make an appointment please call (07) 3123 4826 and ask for an appointment with Not Just Bendy or Contact Us.

Why is Rehabilitation of the hip and pelvic area so important to Hypermobile Individuals?

Posted on by Sharon Hennessey

I am a physiotherapist in Brisbane with a special interest in hypermobility related connective tissue disorders so most of the clients I see have hypermobile-Ehlers Danlos Syndrome, Hypermobility spectrum disorder or Asymptomatic Generalised Hypermobility. 

I have observed in my clinical practice that around 90% of symptomatic hypermobility clients have hip or pelvic issues.  Common complaints are locking, giving way, clunking, popping, incontinence and pain. There are many different structures that contribute to these issues including the joints (Hip, Sacro-Iliac Joint (SIJ) and Pubic Symphysis), the soft tissues (muscles and their tendons), the nerves and also referred pain from the low back and other structures.

It is not overly surprising that hip/pelvic complaints are common, as many hypermobile people have lots of painful areas throughout their body but in my opinion, rehabilitation of the muscular control around the hip, pelvis and low back is pivotal to improved quality of life and maintenance/improvement of function in simple and complex hypermobile clients…..

To read more please visit my guest blog on great Australian site Hypermobility Connect