Getting stronger with EMSCULPT, the no-pain, muscle-building, fat-loss medical device*

*In collaboration with S-Thetics, Beaconsfield.

My husband is super-fit, works out most days with weights and the odd run. But although I have a chronic pain condition, I've recently done far more sit-ups in half an hour than he - or anyone - could ever dream of. Twenty-thousand to be precise.

While I let that sink in, I’ll admit, it wasn’t under my own steam. I've used medical technology for my abdominal muscles to benefit from the physical effects of the equivalent of 20,000 sit-ups and without actually moving myself.

Intrigued? Who wouldn't be?

Lack of body strength

In recent years I’ve found myself with a bit of a problem. I have a structural weakness in my back thanks to Ehlers Danlos syndrome, but repeated abdominal surgeries have decimated my stomach muscles, leaving me with a dangerously weak upper body.

The result has been regular episodes of my back giving way, with my weak abs leaving me crawling on the floor, unable to hold myself up. One recent, memorable incident meant my husband and son had to roll me, shrieking, onto a large drawing board to carry me to bed.

Something had to change - but my EDS and PoTS preclude me from doing sufficient - or really any - exercise. Even standing up still for long can be a challenge.

Then I came across something that changed my life.

Magical muscle machine

The answer was EMSCULPT. This miracle medical device makes you not only stronger but also slimmer in just four sessions of half-an-hour each. I was introduced to it by Miss Sherina Balaratnam at her multi-award-winning medical aesthetics clinic, S-Thetics, in Beaconsfield, Buckinghamshire.

I'm a huge fan of S-Thetics and have had a number of beneficial and life-enhancing treatments there previously.

This video I've put together explains what it’s done for me - and could do for you.

*I received this particular session of EMSCULPT courtesy of S-Thetics Clinic.

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EDS Awareness: Coming to terms with chronic pain

As ever, My EDS Awareness month post sneaks in on the last day of May. It's been a big month, including a short, but amazing, trip to Barcelona to celebrate my and my husband's 50th birthdays (wtf?!). His was in April and mine is on 6th June (666... really rather fitting.)
I wasn't sure how I would manage it, given the uncertainties of my Ehlers-Danlos syndrome, but we had booked assistance at the airport and the train station and I took my own wheelchair.
The weather was perfect for me, warm, but not too hot for walking/wheeling around the very accessible city, visiting the wonderful architectural sights of Gaudi, including the incomparable Sagrada Famiglia, the stunning mosaic quirkiness of Park Güell and the stirring originality of La Pedrera and Casa Battló. It made my heart sing and I felt so alive and joyful to be there.

At Gaudi's Park Güell

Because of the limitations that Ehlers-Danlos syndrome places upon me, I had carefully planned the trip to include rest times, using taxis to get around so as not to use precious energy on getting between destinations. Slow walking with a stick, lots of breaks to watch the people go by and an afternoon rest while my husband visited the Picasso Museum were all factored in. Still, by the last day, I was exhausted and had to take to my wheelchair with the planned visit to Montjuïc being left for a future visit.
It's not how I used to go on holiday pre-illness but, after four years, I feel I have come to terms with structuring my life around it.

ACCOMMODATING EHLERS-DANLOS

It took more than two years to come to the realisation that this is how my life now is, restricted, stilted by fatigue and, if I forget to take my pain meds, in agonising pain. I had to decide if I was going to be angry that this had happened, or to accommodate it as an unwelcome guest, planning your life around their convenience.
At the same time, the years were inexorably moving forward, my children would soon both be adults and no longer so reliant on me. And, as I began staring down the barrel of 50, I have had to decide what kind of life I wanted to have, given what I was physically able to do.
I have seen any number of YouTube and Instagram videos of young women with EDS talking or complaining about their conditions; they're hard to watch and I'm grateful that my own illness didn't blow up until much later in life. Although I was always plagued by various bodily pains, digestive problems, dizziness and so on, I had no diagnosis and I wasn't a regular joint dislocator. I just got on with it. I was lucky.

But coming on, as it did, just after I was getting back into working after caring full time for my autistic sons was a huge blow. Realising it was here to stay plunged me into depression, always something that has clung to my event horizon, never quite able to escape completely.

A VICIOUS CIRCLE

One of the problems with EDS is that it can become a vicious circle of debilitation. You are tired and faint and in pain so you don't - can't - move about much. As a result, your body becomes weaker and "deconditioned". It is the cruel partner of any chronic illness.
At my age, this was even more of a danger that had become my reality. Going anywhere took extreme effort and the payback was several days in bed just to get back to the usual poor state.
It was going on the RNOH Stanmore Hypermobility Rehab course that gave me the confidence to start to try to push myself a little bit more. Armed with skills for pacing (that came in very useful in Barcelona) I began to look at my work schedule to try to ensure that I had energy for both the things I wanted to do and the things, like caring for my boys, that I needed to do.

Serendipitously, I found a fitness expert who now also has a diagnosis of EDS. She puts me through weekly (or so) gentle one2one Pilates using a Reformer and, over time, my strength has built up to a level where I can go to a meeting in London and take a bus from the train station, if there is a stop within a few metres of my destination. It's a big money saver from always needing a taxi, although it does exact a greater physical toll. Of course private Pilates is a financial investment that not everyone can afford. Once again, I'm lucky.
Taking up mindful meditation, stopping eating meat and developing a keener understanding of myself, via my own autism diagnosis, have all helped. It's important to do my best to ensure that I, and not Ehlers-Danlos, am in control of my future.

FIFTY PLUS

Although my caring duties are far from over, I have reached a point where they are not as all-consuming as they once were. In theory, I have more time to find or create work and earn money.
Luckily, again, over these years, I have developed my special needs website, worked as a volunteer and honed my skills as a social media specialist for social good. Mostly from my bed. But is this what I want to do for the next 20 years?
50 is nothing to be afraid of; it is a time, for many, of new freedom from parental duties if you've had your children by your early 30s.
But of course, Ehlers-Danlos doesn't like to release its grip quite so easily. Just because I've reached a turning point in age and mental strength doesn't mean it's going to pack its bags and bugger off. I may have learned to accommodate its threatening ever-presence, but I am mindful that it is always a precarious balancing act. One missed or too-late dose of pain meds, too little movement because I'm not feeling well, eating something my EDS digestive system doesn't like or just doing too much (what is too much varies daily), can destroy the delicate equilibrium I have acquired. Even emotional upset or stress can tip the scales into a flare up.
But I never forget that despite all these challenges, I am lucky to be where I am right now. Ehlers-Danlos syndrome is a greedy bastard. It knows that no matter how hard you work to regain strength, one slip and it will have you back in its painful embrace.

READ MY OTHER POSTS ON EHLERS-DANLOS SYNDROME

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Ehlers Danlos syndrome. Sometimes hard to see, always hard to live with

My youngest and I were both diagnosed with Ehlers Danlos syndrome by leading world expert in the condition, Professor Rodney Grahame (Update: Prof Grahame sadly passed away in early 2026). As well as being about as knowledgeable about the condition as it is possible to be, he's also kind, genial and still passionate about his field, despite being past the age at which many would be thinking of retirement.

Prof. Grahame, however, is still at the top of his field and has just published a new medical paper on EDS Hypermobility type, along with two other authors, Dr Yael Gazit, Dr Giris Jacob. It's entitled Ehlers–Danlos Syndrome—Hypermobility Type: A Much Neglected Multisystemic Disorder.

It's an important paper for EDS, I believe as it's just the kind of easy to understand information that can be presented to medical professionals to help them understand how the condition can affect so many different parts of the body at the same time. It's not "catastrophising" (don't you just hate that word?), it's not imagined, it's not a coincidence. If it contains collagen, as most things in the body do, it is likely to be affected to a collagen disorder. I'm not quite sure why this is a surprise to anyone.

It's also the CQC's Invisible Conditions Week, so I thought it would be a perfect subject for a post here, my irregular counterpart to Special Needs Jungle which is for children and young people with disabilities.

Many types of Ehlers Danlos are extremely rare and can be fatal. hEDS, however is much less so, but because it is a connective tissue disorder, found all over the body, it is pervasive and can be extremely disabling, as I have found. While EDS can be invisible if you're able to walk about easily, many need to use crutches, splints or wheelchairs or perhaps rely on nasogastric tubes for nutrition. Almost everyone with EDS is affected by fatigue.

Living with EDS is, at best, a bit crap. Work is left undone because I have to sleep. Days are lost to pain, bone-dragging, walking through-treacle fatigue or recovery from activity. Pain meds must never be forgotten or you get hit twice as hard. Attending events has to be carefully planned so I can rest before and after. It's a pain, living with chronic pain. 

The article describes hEDS as a "complex hereditary disorder which is multi-systemic, probably due to the prevalence of connective tissue in all body systems. Its gene defect has yet to be found and might be of multi-genetic nature".  This basically means it is likely to be caused by more than one gene and so any cure is likely to be a loooong way off. Increasingly, suspicion is growing that it is also connected to autism because of the increasing number of people diagnosed with both conditions, including my boys and me.

Even more perplexing, the level of hypermobility a person has can have no correlation to the amount of pain they experience. As a child, I was bendy, but not double-jointed. I did, however, suffer unexplained, severe bouts of pain in different parts of my body that would come and go. Back pain has been an almost constant companion, even at one point, a slipped-disc that sparked back spasms, something I would say was actually worse than labour pain. I actually used to think living like this was normal because to me, it was. I have also always had regular dizzy spells, neck pain, jaw pain, intestinal pain and digestive difficulties, palpitations, was extremely short-sighted before I had Lasik, have life-long depression and anxiety, dysmenorrhea so severe it made me throw up and excessive adhesions as a result of abdominal surgeries. These are all manifestations of EDS that the paper cites as common to the condition. I never once wondered if they were connected. I just thought I was a general weakling. 

It's hard to believe it took until I was 45 to be diagnosed. Well, not really that surprising considering how many people out there are also late being diagnosed after similar experiences to mine. I had a successful career despite all those ailments. I just "got on with it"; what else was I supposed to do? My ambition was far superior to anything else at the time, anyway. 

I got married, had kids, though childbirth was extremely difficult, ending in caesarians. It wasn't until, after a particularly stressful, exhausting time when I'd gone back to working, pushing myself hard, that the regular aches exploded into an all-over conflagration of agony in 2012, that has never gone away.

A useful prop

 

To look at me today, sitting in a conference or on a train, you wouldn't guess there was anything amiss. I actually look quite well. It's only when I stand and then perhaps sit down again when my blood drops to my feet and my heart starts to race, or you see the stick I use (for stopping, not for walking), that you notice anything different. 

The stick is a handy prop, really. It turns the invisible into the visible. The stick makes my life easier not just because it helps me stay upright when there is no person to hold onto, but because it signals to others that I have a disability. And it works, as I am usually offered seats, helped with heavy bags, offered directions to the lift instead of stairs and so on. The stick is like a magic wand that spurs kindness and humanity in strangers. The wheelchair, when I need it, even more so, but that also gives me a ring-side seat on how disability-unfriendly the built environment is. Something to write about another day.

Treatment for EDS is hard to come by. The paper recommends: 

...multidisciplinary co-operation and consulting with a cardiologist with echocardiogram monitoring every 2–5 years, orthopaedic surgeon with a follow-up once a year, oral and maxillofacial surgeon for temporomandibular joint involvement, gastroenterologist when gastrointestinal manifestations are present, ophthalmologist to rule out other connective tissue diseases and when ocular manifestations are present, urologist and urogynecologist when urologic manifestations are suspected, neurologist and neurosurgeon when prolonged headache is present to rule out Chiari 1, and psychiatry when anxiety and/or depression are suspected. Allergologic consultation may also be needed when there are multiple drug reactions and/or food allergies. An autonomic nervous system specialist should be consulted when signs and symptoms of POTS or other autonomic nervous system manifestations are present. Management includes physiotherapy and hydrotherapy aimed at symmetric and generalized muscle strengthening and proprioception acuity improvement, including deep connective tissue manipulations after each session, occupational therapy when wrists and fingers are involved, and cognitive behavioral therapy for proper adjustment to the chronic nature of the condition. Nutrition has an important role in treating EDS-HT, and nutritional deficiencies should be sought out and treated.

Wowzer, well that would be nice, wouldn't it? But the point of highlighting this paper is that people can print it out and take it along to their doctor. It's great that the Prof recommends this as a treatment standard, but it's another story when you're trying to persuade your local doctors to give it to you.

 

Hydrotherapy 

It also recommends hydrotherapy, which is one of the NHS's best kept secrets and when you find out about it, it only comes in blocks of six, which is when it's only just starting to show benefit for someone with a long-term condition. This really needs to be rethought, or at least the facilities could be rented out after hours, perhaps. 

This new papers' authors make an important recommendation in conclusion that until a gene or genes for EDS-HT have been identified, doctors must think about the possibility of the condition in every chronic pain patient and look for joint hypermobility, as well as the other multi-systemic manifestations the paper mentions. Do you think they will? Sadly, I doubt it. It's much easier  - and quicker - to send people (mainly women) having been treated for each symptom, as indeed I was for much of my life, than to consider looking at the patient as a whole. 

This is why charities such as The Ehlers Danlos Society exist, so that information about the different types of EDS can be publicised, patients empowered by knowing the symptoms and where to go for help and how to ensure they get it. And, most importantly, so that doctors can be educated in how to recognise, diagnose and treat it and be reminded that zebras can sometimes also be horses.  

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Invisible Disabilities Week: Our experience with treatment for Ehlers Danlos syndrome

This week it's the Care Quality Commission's #InvisibleDisabilities Week and today, they're highlighting Ehlers Danlos syndrome which as you know is the delightful multi-systemic condition with which my sons and I are diagnosed.

I managed to get through to my forties before I became very ill with EDS in December 2012. It followed a return to paid work which I threw myself into as well as managing Special Needs Jungle which had come into its own the same year. I might have got away with it if it wasn't for the fact I was also falling into the swirling vortex of an unexpected early menopause, again due to consequences of EDS.

Looking back, I began to suffer the racing heart symptoms of PoTS before I'd started the job that March 2012, but I had shrugged it off, the same way I had just carried on my whole life up until then.

At various stages I'd suffered with weak ankles, broken limbs, strange sharp pains that would come and go, dizzy spells, an inability to stand for long without back pain, pleurisy, gastro problems, fatigue, mysterious abdominal pains, a constantly stiff neck, frozen shoulder and even a slipped disc. On top of this was an intractable depression that started at 16 and has plagued me on and off ever since as well as other mental health difficulties.

These are all symptoms of Ehlers Danlos syndrome, but dots had no chance of being connected - no one had ever heard of it. It was far more likely that you'd be diagnosed with a huge case of being a chronic hypochondriac.

Because it was the 70s and I grew up in a single parent, working-class family, you just got on with things and I was out of the house more than I was in it. Maladies were dealt with matter-of-factly and a constant forward motion was encouraged. The standard refrain was, "You'll be alright when you get going." It serves to make you resilient but even the resilient have their limits for coping.

Whizz forward a few decades and I twigged that my youngest was suffering from symptoms matching EDS, that I had discovered during a search of the Genetic Alliance UK website for Rare Disease Day. Of course I realised I had the same, but I was alright when I got going, as I had been taught so long ago.

My GP had never heard of the condition, so I was able to give her some information from the support charity, EDS UK. I had also researched the options for consultants and discovered there were not only very few, but the wait was ginormous.

We opted to pay for a private consultation with the pre-eminent specialist in EDS, Professor Rodney Grahame at The London Hypermobility Unit where he was diagnosed. Several months later, being alright when I got going just wasn't working and my own body metaphorically fell off a cliff from too much work, stress and too few hormones. I was also diagnosed privately by the Prof.

The CQC-led Invisible Disabilities Week want to hear tales of our treatment experiences. For my son and I, they are vastly different.

My youngest was referred back into the NHS at our request, and Prof Grahame recommended Dr Nelly Ninis, an extraordinary Paediatrician at St Mary's, London.  Dr Ninis sees many children with EDS and sent youngest for a 24-hour ECG and an echocardiogram. This is standard in EDS because of the possibility of mitral valve prolapse and abdominal aortic rupture if you have EDS IV.

Because of suspected Postural Orthostatic Tachycardia (PoTS), youngest was given a Tilt-Table test and found to definitely have this condition too, which is very often seen as a part of EDS.  Stretchy collagen means the blood vessels in the extremities do not respond quickly enough on a postural change, e.g. standing, and so blood drops to the feet. The heart then responds by racing to try to get blood back up to the head which makes you feel very dizzy or you can pass out completely.

The ECG and echo were done locally and it was apparent that the doctor we saw had little real understanding of EDS beyond the 'headline'. He also once kept us waiting for 45 minutes, by which time youngest had become very 'Potsy' and thrown up and I was exhausted. I was not best pleased, as you can imagine.

Dr Ninis recommended Hydrotherapy,  but the local physio team were very nervous of possible fainting with the heat of the water. It went fine for most of the sessions and was beneficial. However, the problem is, hydrotherapy is designed for short-term use with just six sessions, which just isn't sufficient for a long-term condition. It's also under-resourced and hard to find. This is mad - hydro is an ideal gentle exercise that can help to transform the lives of people living with chronic pain, if only they could get it or even knew about it.

We also tried with local dry-side physio, but again encountered the problem of a lack of understanding of EDS beyond what they might have read in a medical reference book. Youngest is also autistic, very sensitive to personalities and took an instant dislike to the bossy physio's insistence of being given a "grading" with a counter in a slot rated from Excellent down to Poor. Youngest rightly pointed out that with her standing right there, only full marks would be appropriate, so declined to take part. We didn't go again.

Dr Ninis, who is kind and compassionate and most of all understanding, sees youngest every three to six months, although it's an arduous journey to St Mary's from our home in Surrey. It means my husband needs to take the day off as my own EDS means the drive is impossible for me. As a contractor, this means the loss of a day's pay.

How was it for me?

My own experience has been much worse in many ways. After diagnosis, I too had to go back into the NHS as we can't afford to keep paying for something we already pay for through taxation. It was seven months before I saw the EDS consultant, Dr Hanna KazKaz at UCL. She referred me for the Stanmore hypermobility rehab course. 

The wait for a first visit for Stanmore assessment was over a year and then it was another eight months before I managed to get on the course. Shortly after I was accepted for the rehab, the list was temporarily closed due to the waiting times already being experienced. It's the only one in the country I believe, so it's hardly surprising they are overwhelmed.

The wait for PoTs diagnosis was even longer. Again we paid for an initial appointment to see the eminent Professor Chris Mathias in May 2013 but the tests would cost £1800 so we waited to see his former NHS team, as he had retired from the NHS himself. The wait thereafter was interminable; a year for a consultation, another few months before the Tilt Table test and a further 10 months for the results of the tests. In retrospect, perhaps we should have paid for the whole lot privately, but hindsight is 20:20.

Where's the care?

For both youngest and myself, every aspect of this has been driven by me, from the realisation of what the problem was to finding the consultants, to going back to the GP time and again to ask for other referrals.

There is no joined up care, there is no creative thinking, there is little thought of the patient experience. Certainly not when the available doctors for the conditions are so few and far between and the waiting lists are so very long.

Neither is there local coordinated long-term care. I understand GPs are generalists and very busy, but I would have hoped that when one family's members in the practice are diagnosed with the same complex, rare condition and the children also have autism, a more proactive approach might be taken. At least to read up on it a bit.

It's a long-term condition, but we have been left to find our own solutions and there is no monitoring. Our experience is very far from the ones described on this CQC page

 It's no wonder so many cases of Ehlers Danlos go undiagnosed.

Being resilient with my long-suffering husband

Lucky for me that I'd had that Gen X "just get on with it" upbringing, because the pressure to cope with offspring with autism, EDS and PoTS as well as my own chronic pain is immense. Indeed, in the past I have cracked under the strain when that one thing comes along and causes overload. I have had to seek psychological help. but we won't even go into the debacle that the Mental Health service is, and continues to be.

This may seem like a critical post, but it is only critical of the resources and the structures that prevent medical professionals giving the care patients need, particularly in the field of rare diseases. Long term health conditions have a psychological as well as a physical impact, even when there is no specific mental health problem. Feeling cared for and that your experience as a patient actually matters, is a huge part of that. It's all part of that joined-up experience that starts and finishes in the GP surgery as what should be the coordinating service.

However, with a shortage of GPs and constant pressure to give more for less put on them by politicians, it is hard to see how this will improve. Perhaps the increase in patient participation boards may make this difference, as a reminder that a 'patient' is also a human being.

The question, "Would this be good enough for your child or parent?" is the mantra everyone employed in caring services should recite every day.

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