Ehlers Danlos Syndrome Type 3: What to expect at your first physiotherapy appointment

Hello everyone,

For a long time, and I mean a long time I put off physiotherapy. Why? – I hear you ask, well I believed it was extremely painful.  Each morning, I was getting physically exhausted just tying my hair up in a ponytail. So, one morning I bit the bullet and got a referral to try physiotherapy.  Fast forward a few years and I have multiple physiotherapists since my Ehlers Danlos Syndrome Type 3 diagnosis.


Why even bother with physiotherapy?

Physiotherapy is important to build up your muscles, to help with pain management and prevent further injury. I am not going to lie to you, exercise does hurt – but not as much as you think if you are doing suitable exercises and the right mentality.  Many of my friends ask well how do you know what are ‘suitable’ exercises? Well… every patient with EDS will have a different pain threshold and symptoms.  All physiotherapists are trained to know of appropriate exercises. However, in my experience it is wise to have treatment with one it is who understands EDS and this is for two main reasons.

  1. So they don’t have a heart attack when you colour in the entire pain body chart.
  2. They can prioritise a plan of action for your body pain holistically as opposed to focusing on one body part.

If you live out in the sticks, (countryside) it might not be possible to get a physiotherapist who has an understanding of EDS in your local area. However, you may be eligible for a referral for a rehabilitation inpatient programme further afield or alternatively you can pay privately.


Now…

What to expect at your physiotherapy appointment with Ehlers Danlos Syndrome

Subjective Assessment

Your first appointment with begin with a subjective assessment. This glorious term, basically means going through your medical history.  You will be asked lots of questions including the following areas:

Pain

  • The nature and location your pain and severity using a likert scale
  • Summarising your most problematic pain areas
  • How often do your joints dislocate and sub lax and how do you get these back into place

Medication

  • What existing methods do you use to manage pain and methods that haven’t worked before and why
  • A list of any medication you take and any side affects you experience

Functionality

  • Symptoms related with your condition on a day-to day basis
  • How does pain restrict your personal / social life?
  • How able are you to do self-care i.e. cooking, washing yourself etc.

Mental Health

  • Personal goals you want to get out of physiotherapy
  • Does your pain cause you issues with your confidence or moods

Objective Assessment

Once the subjective assessment has been complete you will move onto an objective assessment. This type of assessment is a physical examination of your body, which may require you to move around a bit but don’t panic! An objective assessment is important for the physiotherapist to know how they can best help you.  If you are like me and have a long medical history, it is unlikely this will all be covered in your first appointment. However, the types of things an objective assessment include are:

Stability

  • Level of stability standing still and walking
  • Level of clumsiness and if you are prone to swaying

Strength

  • Muscle strength around your joints
  • Any areas that are especially weak

Mobility

  • Do you need mobility aids to walk around?
  • How far do you walk on a day-to-day basis
  • An assessment of your walking pattern
  • Quality of your movements
  • If you need a referral to orthotics for mobility braces assessment

Posture

  • Check for flat feet
  • Look for hyperextensions of joints
  • Assessment of sitting and standing postures
  • Postured observed from different angles standing
  • Assessment of knees and ankles to see link with a poor posture

Plan of Action

Although, a detailed plan of action won’t be in your first appointment your physiotherapist will want to discuss the type of exercises that might help manage your pain. If you live in your bed – don’t worry there are even exercises you can do there to.  Your physiotherapy may also discuss on how many appointments you may need/ entitled to on the NHS with further goals for a rehabilitation programme. Rehabilitation programmes for EDS/ chronic pain are intense courses around 3 weeks long that also focus on your mental health.

I hope my short physiotherapy guide as provided in you into some insights of what to expect at your first appointment. It is important to remember to commit once you start treatment because your physio will know if you have or haven’t been putting in  the work  on your next assessment.

Like anything physical therapy, isn’t a miracle cure but it has been tested and proven as a great management tool for managing Ehlers Danlos Syndrome Type 3 by the NHS.


Have your Say

What are your thoughts on physiotherapy to manage chronic pain?


Sharing is Caring

If you know anyone who is considering physiotherapy for Ehlers Danlos Syndrome or another joint disorder, I would love if you shared my post.

Like what you see? 

Related posts in the Ehlers Danlos Series

My Invisible Illness ft Tramadol

16 Things A Doctor Won’t Tell You When You are First Diagnosed With EDS

15 Things Medical Zebras have Learnt to Love about their Incurable Illness

Misfortunate: A Poem about Ehlers Danlos Syndrome

Through the Nutritionists’ Eyes


Related Articles 

An Ehlers Danlos Syndrome patient’s perspective on physiotherapy

Brunel’s Physiotherapy lecture – My Stripey Life  

5 Common Myths and Facts about Physiotherapy


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