Physiotherapy for adults with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders
Jason Parry, Extended Scope Physiotherapist / Clinical Specialist Physiotherapist, University College London Hospital and The Hypermobility Unit, Hospital of St John and St Elizabeth, London
Please note: The following text cannot and should not replace advice from the patient's healthcare professional(s). Any person who experiences symptoms or feels that something may be wrong should seek individual, professional help for evaluation and/or treatment. This information is for guidance only and is not intended to provide individual medical advice.
The practicalities of physiotherapy
It is widely accepted among the medical community that physiotherapy forms one of the mainstays of managing the conditions hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD). You may possibly have been newly diagnosed and referred to physiotherapy by your medical consultant, unsure of what to expect. Others of you may have received physiotherapy in the past but without particular focus on your condition. In either event, this article aims to explain what to expect from physiotherapy and how it can help with you.
Whether you are referred to physiotherapy via the NHS or privately, your initial appointment usually starts with what is known as a subjective assessment. This is basically a conversation, or an information-gathering exercise if you prefer, during which your physiotherapist (physio) aims to collect as much information as possible about you and your problems, and then uses this information to determine what physical and functional difficulties you have. This should also guide them as to what to choose to look at when they go on to physically assess you.
The subjective assessment often goes a little like this: “I have a referral from Dr so-and-so stating that you have a new diagnosis of hypermobile EDS/hypermobile spectrum disorder. So tell me a bit about yourself. What are your main problems?” At the same time the physio is usually also clutching an empty body chart in their hand – a picture of a generic blank human body staring at you from the front and back. They will then often ask you to helpfully “Please shade in on the body chart the bits of you that correspond with where you feel your pain or have your issues”.
Now at this point I’ll let you into a little secret. When we train as physios we practise filling in loads of these body charts in class and get handed hundreds of little example ones, each usually covering a different problem. Sometimes it might be a painful knee that’s shaded in, other times a dodgy hip. Commonly it’s a shaded-in back with a jaggedy line running down one of the legs. Physios know where they stand with body charts like this.
And then suddenly, there’s you lot. You take hold of that nice empty body chart and set to work. Shading in here, scribbling in there, colouring in areas and dotting other bits. Commonly, by the time you hand it back to the physio the whole body is covered in dots, splats, areas of shading, pain, points of dislocations/subluxations, aches, headaches and gastric squiggles. Trust me, this can be scary for your regular physio who may well be unfamiliar with what unfortunately still remains a lesser-recognised condition. That’s no good for you, staring non-confidently across at the colour draining from your physio’s face. So what do we do at this point? What should happen?
First of all, stay calm. We’ve established that you may well have a ton of issues going on: pain, subluxations, postural tachycardia syndrome (PoTS), gastric issues and goodness knows what else. Well, it’s not going to get solved all in one go. We’re probably not even going to understand it all properly in one go. So let’s not try to. We’ll get through it if we take our time and do it methodically.
Let’s go back to the subjective history. As mentioned, this is an information-gathering process and the more effectively your physio undertakes it, the better they should be able to help you further down the line. In my opinion, there is a series of key areas that your physio needs to know about:
- Pain: where you have it, nature and severity.
- Dislocations/subluxations (clicking, popping, etc): where, how often, how do you get it back in place?
- Fatigue, dizziness, digestive symptoms: how often and for how long? Do you faint? Do you have any allergies?
- Current order of most problematic areas: really helps to prioritise what to deal with first.
- Previous interventions: what’s worked well before, what hasn’t?
- Past medical history: need to know about other medical stuff going on.
- Medications: what are you taking, does it help, are there side effects?
- Social history/lifestyle: home set-up, do you work, socialise, have friends/family?
- Functional difficulties: how do you cope with everyday tasks?
- Issues of anxiety, mood and confidence
Now they’re beginning to build a picture of you – about what actually matters to you. This is about you and your life: you’re not just a diagram on a piece of paper or a drawing on a body chart!
Once the subjective assessment has been undertaken we move on to the ‘objective (physical) assessment’. Physios (and patients) can often get a little bit panicky about this bit, i.e. physically moving you about. Understandably they don’t want to hurt you and certainly don’t want you to dislocate on them, and the same goes for you. Unfortunately this part can sometimes be a bit uncomfortable but it does serve a really important purpose. If we don’t start to move and assess you then we’ll never get an idea about what’s strong, weak, short, tight, imbalanced, how you move, what slips out, what doesn’t and why. If your physio is going to help improve your situation then they need to know about these things. So don’t panic, stay calm and take your time to do the hopefully gentle movements that your physio asks you to do so that they can start to get a sense of your physical status.
With trust hopefully established between the pair of you, a good basic physical assessment should feature evaluation of the following:
- Observed from front, back and sides
- Look for hyperextended joints (knees, elbows, etc)
- Check for flat feet
- Watch for ‘hanging’ on hips (passively leaning to one side when standing, using your ligaments to hold you up)
- Assess sitting and standing postures, for instance do you have a wide base of support when standing?
RANGE OF MOVEMENT
- Observation of quality and range of movement around each joint, including the spine
- Assess for areas of stiffness (alongside hypermobile joints)
- Compensatory movements
- Fear of movement secondary to pain or dislocation
- Control of movement
- Reproduction of symptoms
- Passive movements
- Muscle strength around joints
- Any obvious weakness
- Muscle patterning – overactivity, underactivity and inappropriate activity!
STABILITY / PROPRIOCEPTION
- Joint position sense (proprioception)
- Poor balance
GAIT / MOBILITY
- Assess sitting to standing
- Walking pattern (gait – with and/or without aids)
- Compensations to ‘normal’ pattern
- Quality of movement
More often than not that’s more than enough for one session. In fact, if there’s a long history then there may not have been time to cover even that much, but if that’s the case then no panic. Don’t expect a rushed treatment programme to be thrust at you. This is not a race – we’re not dealing with a hamstring strain that you can whack through in one session, we’re talking about a long-term condition that takes time to assess and manage properly. There’s a lot to consider with hEDS/HSD and usually a lot to cover, so we get through what we can in the time available and if we panic and try to do too much in one go, that’s where things sometimes go wrong – key information gets missed and patients get ‘yanked about’ and end up in pain. So things need to be taken a little steady, but equally we haven’t got all day so we try to get through what we can during a session in a timely manner.
Having completed the subjective and objective assessments this is where the reality check kicks in…
No physio can treat everything in one go. They can’t clear you of your hEDS/HSD or instantly rid you of your pain. They don’t have a magic wand. There’s only so much that they can do in any given session, but don’t despair because if you work together with time, effort and application from both sides, and the right strategies in place, you can achieve an awful lot more than you may imagine – but you have to stay realistic! There’s no sense in turning up and setting yourself a target of running a marathon or scrambling up Mount Everest. Be sensible. You have to be mindful that you have a condition that you need to manage.
Therefore, please remember:
- Your physio cannot treat everything in one go
- Things don’t change overnight
- The hEDS/HSD is not going away
- Pain may not necessarily change (hopefully, it might and it can) but strength, stability, fitness, function and outlook on life certainly can.
So what are the practicalities of physiotherapy?
What can be done to help influence and improve your life? The accepted key principles of physiotherapy for managing hEDS/HSD are:
- Self-management – putting you in charge of your condition, not your condition in charge of you
- Restoring function – working towards realistic goals
- Addressing weakness – if it’s weak, try to strengthen it
- Addressing tightness – if it’s short/tight, try to lengthen it
- Addressing compensatory movement patterns
- Addressing poor proprioception
- Improving fitness
- Addressing fatigue
- Acute care management – dislocations/subluxations
- Education – anatomy, healing, non-pharmacological PoTS management advice and PACING!
“There are no recipes”
The physiotherapist has to treat what they find. Yes, you all have hEDS/HSD, which often comes with many common similarities and presentations, but you are all different. You each have different strengths, weaknesses and deficiencies and as such need to be assessed and treated individually, and any physio worth his/her salt should look for the issues specific to you. That said, there are still many common treatment methods used in physiotherapy for addressing some classic hEDS/HSD presentations which will apply to almost every one of you. Although not all of these approaches have been tested with research in hEDS/HSD populations, expert clinicians have recommended their use when appropriate:
- Use some form of load (resistance bands, dumbells, body weight, you can even use gravity)
- Baseline number of repetitions (start low) – use a paced approach
- Movements done with control
- Make sure that the correct muscles are working!
PROPRIOCEPTION (JOINT POSITION SENSE)
- Use taping for feedback
- Gym ball exercises
- Single leg stands (if able), wobble boards, balance boards
- Pressure garments can provide proprioceptive feedback
- Exercising with mirrors can give great visual feedback for proprioception
- People massively underestimate the role posture plays in a pain condition. If you hold yourself in a poor posture for hours on end, don’t then be surprised if there’s a painful consequence to that.
- Work with your physio to identify what correct posture to hold yourself in (and why). Do stretches to address your tight bits.
- Work that core. Postural re-education also needs core, core and core!
- Use mirrors to help set your posture.
- Use prompts to help remind you about your posture (e.g. every time you get a text message think about how your posture is, etc).
- Water can be a really nice medium in which to exercise. It can be kind on the joints and offer the opportunity to do some gentle strengthening exercises in a supportive way.
- Water exercises can also be a useful way to build cardiovascular fitness and improve proprioception.
- Yes stretches! Just because you are hypermobile doesn’t mean to say that parts of you don’t get stiff too. Stiffness can be a common complaint
- Global muscles can often overwork and get tired, causing ache and muscle spasm
- Stiffness can occur through pain and disuse
- But please make sure you don’t overstretch… “Just because it goes there doesn’t mean you should take it there!”
ACUTE MANAGEMENT (DISLOCATIONS AND SUBLUXATIONS)
- Advice and education regarding the management of such episodes. This is covered in a further EDS UK article ‘Managing dislocations and subluxations in hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders’.
- Knowledge is power
- Education helps dispel unhelpful beliefs about what might be going on inside of you
- Education can help de-catastrophise
- Education can offer advice regarding the non-pharmaceutical management of PoTS symptoms.
- Education helps you understand pacing, flare-up management and pain management principles. And PACING is one of the most important principles that one can learn for managing hEDS/HSD.
What about working with my local physios?
The principles are all the same. Your local physio may not always be quite as familiar with hEDS/HSD, but they’re all trained and qualified and as long as they follow the subjective and objective assessment plan as outlined above, then they should have a pretty good shout at helping you to get on track.
NHS physiotherapy considerations
Due to NHS pressures some local physios come under constraints that can make their job that little bit more difficult when dealing with hEDS/HSD patients.
Number of sessions
Some local physio services are constrained by the number of sessions they are allowed to offer patients (often only up to six treatment sessions). That’s not really a lot when dealing with hEDS/HSD patients with a lot to cover, but sadly the physios’ hands are often tied.
Some departments are under pressure concerning the length of a treatment session. Sometimes that can be 45 minutes, sometimes 30 or even 20 minutes. That means your poor local physio has to do a lot in a very short time. Again, not their fault, so please don’t take it out on them. They’re doing their best.
Hospitals are under pressure to make sure that patients referred to physiotherapy do not have to wait too long for an initial appointment. What does this actually mean for you? On occasion you may get triaged to see a physiotherapist who happens to have space in their diary but who may not necessarily have the most experience with hEDS/HSD, and you may then end up getting frustrated with them during your appointment. Again, please be kind, it’s not their fault and they are doing their best. All physios are qualified and will often discuss your case with a senior physio afterwards if they need any extra advice.
Private physiotherapy considerations
For those of you who choose to seek private physiotherapy to help manage your hEDS/HSD, please remember that paying for it does not mean that they can get you ‘better quicker’. It also does not mean that they are necessarily any better than an NHS physio. All physios are always trying to do their best to help you as much as possible whether they be private or NHS.
What’s the bottom line with regards to the practicalities of physiotherapy and hEDS/HSD?
Go with realistic expectations and make sure that you set realistic goals.
Help guide your treatment – provide a clear, concise history and a problem list. This gives both you and your physio something to work towards.
Follow the advice your physio gives you, then give feedback at the next session as to whether it is helping. Don’t decide by yourself to start changing and altering things that your physio has given you to do between sessions (unless it’s causing you raging pain) otherwise they won’t know whether what they’re doing is working or not.
Stay calm and don’t get frustrated.
HEDS and HSD are lifelong conditions, but with good careful management and the application of key principles the impact on your life can be greatly reduced. Best of luck!
Peer reviewed by: Dr Jane Simmonds, Senior Teaching Fellow, Great Ormond Street Institute of Child Health, UCLH and Specialist Physiotherapist, The Hypermobility Unit, Hospital of St John and St Elizabeth, London
Date of last review: 01/12/2017