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hEDS and the 4 P’s By Carla Spear

Posted By HMSA Social Media Coordinator, November 13, 2017

Living with Ehlers Danlos syndrome (EDS) isn’t easy and it can be hard to deal with the knowledge that there is no cure. I spent years refusing to accept there wasn’t a cure and on a few occasions even wished for a magic wand. Over time, I’ve come to realise that it is possible to ‘manage’ my condition with the correct balance and I have created my own guidelines to help me.

As a rule of thumb, I try to stick to the 4 p’s to manage my EDS and related conditions. With a balance of these, I’ve found it is possible to maintain some control over the condition and prevent deterioration. Having a good support network will also help you on this journey – be it friends, family or professionals, they are there to help you and can be a huge asset when you’re struggling.

I think of living with EDS as similar to being on a rollercoaster – it goes up and down, there are good and bad elements, and the speed of the progress varies continuously.

Physiotherapy:
Building muscle to strengthen the joints is essential as these can be used to help hold our joints in place. Once muscle has been lost, it takes much longer to get it back. I learnt the hard way how quickly muscle mass is lost when exercise is stopped and now make a point of doing daily exercises – these exercises vary depending on how I feel and what my body is up to. Finding the right type of exercise suitable for yourself is essential and can take time – what works for one person may not work for another. It is important to remember that pain when doing physio isn’t always a bad thing. If it is agony, stop the exercise. If it is aching a bit, that may mean the muscle is beginning to respond. Over time you should be able to increase the repetitions and it may vary on a day to day basis, based on how you’re feeling. Keep at it though – it is worthwhile.
Over the years I’ve come across a lot of other people with EDS who have gone to their Dr or Rheumatologist for help and have left feeling angry/upset/misunderstood/disappointed/dismissed because they were told to exercise. Physio does help – it is not a cure but is key to managing EDS. It doesn’t have to be hospital based and not all exercises are suitable for everyone but it has been proven that physio helps. There is no miracle cure for EDS – it is a case of managing the symptoms. Most people when they hear the word physio, automatically think of multiple exercises in a hospital or the dreaded physioterrorist shouting like a drill sergeant. Not so – physio can be done in the home and even incorporated into everyday activities such as making a cup of tea: make sure you are standing properly, practicing good posture, activating your core muscles and moving with control. Be aware of noticing how you are standing and where your body is in space. Our proprioception is often poor and can be improved using compression, however I find that just stopping every so often and taking note of where everything is can improve spatial awareness.

Pain Management:
This does not only have to involve tablets and injections, it is so much more than that, as I learnt on a pain management course. A few years back I was on a whole cocktail of medications, but didn’t think they were helping me much, so over time I stopped taking them (under medical supervision). Pain management isn’t just about drugs and medication, it’s about having a toolkit that you can utilise when you need to (see page 73 for details of Pain UK’s Pain Toolkit) – if I’m in severe pain and have taken my basic medications, I then try distraction, relaxation, deep breathing etc. This doesn’t always work, but I find it much more preferable to taking more pills.

Pacing:
Pacing is key to managing EDS, however it is much easier to say than to put into practice. It’s not always possible to pace when life throws curve balls at us, but so long as the basic principle is there, it is possible to manage most things without burning out afterwards.
There are, of course, also times when it isn’t possible to pace, so, in those instances, it is a good idea to have a recovery plan lined up.
I would recommend anyone with EDS to draw up a “coping plan”. On my kitchen door I’ve stuck up a ‘relocation plan’ that I refer to if I get stuck with a dislocation. This is tailored to me, but includes pain meds, relaxation, distraction, traction, heat/ice…with the last resort to call for help. The plan you draw up will be specific to you.

Posture:
Many people may be surprised to see this one in the selection, but, from experience, I have learnt that whilst sitting like a sack of potatoes may be more comfortable, it can put more pressure on the spine in the wrong place and eventually result in more pain further down the line. Making sure you are aware of your posture isn’t easy, especially when you have proprioception issues, but I’ve found that even taking a moment every so often, to make a note of how you are sitting or standing and then improving it, can help over time.
Hannah Ensor, HMSA Patron, agrees:
‘I regularly give a talk at events, such as the HMSA family programmes, explaining that exercise equals ‘controlled, good posture and movement’. Exercise is really important in managing hypermobility syndromes, but, as Carla has explained, the important thing isn’t how many repetitions of an exercise you can do, or how much weight you can lift, but how well you can keep your joints in good positions throughout the movement. Even doing housework can be exercise, but only if it is done with a focus on keeping good posture and using joints well. For example, when making a cup of tea, ensure your core muscles are engaged, and knees are soft (not forced backwards into hyperextension) then lift the kettle with shoulder, elbow and wrist all well positioned – this not only reduces subluxations and dislocations, but also allows joints to be strengthened slowly and steadily. Activity done in the floppy desperation of ‘I must get this finished before I collapse’ kind of way, which is so familiar to many of us, doesn’t count!’

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This ‘Your Say’ piece was originally featured in an HMSA Journal. The Journal is an HMSA member’s benefit sent out twice yearly. To become a member visit: http://hypermobility.org/membership/

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The following HMSA publications cover the above subjects and much more:

– Living well with a heritable disorder of connective tissue
– An Educators Guide to the hypermobile student
– Persistent fatigue and heritable disorders of connective tissue
and can be ordered from: http://www.hypermobilityshop.org/epages/78166025.sf/en_GB/…

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RESOURCES:

More on physiotherapy can be found at: http://hypermobility.org/h…/physio-and-occupational-therapy/

More on pain management can be found at: http://hypermobility.org/help-advice/pain-management-2/
http://hypermobility.org/…/pain-man…/pain-relief-techniques/
http://hypermobility.org/…/pai…/pain-medication-information/

More on pacing can be found at:
http://hypermobility.org/hmsa-blog-pacing-by-sarah-wilson/
https://stickmancommunications.blogspot.co.uk/…/hidden-disa…
http://hypermobility.org/help-…/kids-teens/coping-at-school/

More on posture can be found at: http://hypermobility.org/…/physio-and-o…/supports-orthotics/
http://hypermobility.org/help-…/kids-teens/coping-at-school/

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Image attribution: Original image – Free Clipart from Clicker.com by Terrance Johnson 08/03/2011


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