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.
- So they don’t have a heart attack when you colour in the entire pain body chart.
- 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.
What to expect at your physiotherapy appointment with Ehlers Danlos Syndrome
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:
- 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
- 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
- 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.
- Personal goals you want to get out of physiotherapy
- Does your pain cause you issues with your confidence or moods
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:
- Level of stability standing still and walking
- Level of clumsiness and if you are prone to swaying
- Muscle strength around your joints
- Any areas that are especially weak
- 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
- 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.
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