Preventing deconditioning while at home

Dr Jane Simmonds, physiotherapist, London Hypermobility Unit and UCL Institute of Child Health

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.

Why do muscles decondition in hypermobile people?

Muscles need to be stimulated. If they don’t get used, for example because you are in pain, muscle fibres change and become weak. Muscles provide some of the stability around our joints and if they are weak, this stability decreases. In hypermobile people, the tissues (ligaments) holding bones in place are already stretchy, which causes instability, and weak muscles make this worse. It is therefore important to build up muscle strength to protect joints which are already lax.

How do you recondition muscles?

We know that people with EDS and HSD who have pain and fatigue often injure themselves while exercising, which can put them off. It’s important to exercise regularly so your muscles are regularly activated and to do it in a very mindful way, connecting your mind and body – i.e. thinking carefully about what you are doing and preparing your body to do each specific movement. This helps to reduce injuries. Research has shown that people with EDS or HSD are often weaker than their peers so starting at a low level of exercise and building up gradually is also important. This will help to prevent injuries. Doing static (isometric) exercises can be helpful, especially after an injury. This involves tensing or activating your muscle (for around 12-15 seconds, but you may need to build up to this) then relaxing it. These exercises will help to strengthen your muscles. If you are bed-bound, working your way around your body activating each muscle in turn, at multiple times throughout the day (preferably every hour while you’re awake), is a good way to start muscle-reconditioning work. Muscles start to decondition after more than 48 hours in bed.

Once you have some muscle strength, it’s important to keep going with a wider variety of exercises, starting slowly and carefully and repeating them regularly. Putting your hands on the joints or muscles you are exercising (or asking someone else to do this for you) can help to feel if you are working the area you are intending to. Our bodies need to be challenged to adapt but you also need to feel safe while exercising. Some people find exercising in water helps them to feel safer. People with proprioception problems (problems sensing where their joints are in space) also report that they prefer exercising in water but we understand this may not be an option in the current climate! Challenging your body regularly (two to three times a week) will build your strength. Take it slowly and really think about how you are moving your body.

Exercise suggestions

If able, sitting on a gym ball and gently bouncing is a good way to strengthen your core muscles. This is especially great exercise for children. Again, thinking about exercises which can be done at home, climbing (e.g. using a climbing frame, trees, bunkbeds – anything really!) is an ideal activity to help children strengthen, especially their hands (which can help with handwriting).

If you have access to a beginners Pilates programme, the breathing and core starter exercises can be really good to start things off. Starter programmes of Tai Chi and Qi Gong are also helpful as these forms of exercise focus on body awareness, control of movement and strength.

Muscles and comorbidities

It can be extremely challenging trying to exercise if you have PoTS or gastro problems but both of these comorbidities can be helped by exercise. Moving activates the muscles in the gut, which helps with constipation, and lower limb exercises help to get the blood back to your heart which alleviates some PoTS symptoms.

Pacing

Use a bad day as your baseline and think about what you can realistically do in terms of exercise. Repeat the exercise you can do daily, with the aim of gradually building it up. Doing too much on a good day may mean that you then can’t do anything for a few days or you risk injury. This can then lead to a ‘boom and bust’ cycle, which can lead to a downward spiral of deconditioning.

For children suffering from fatigue which might be preventing physical activity, it can be helpful to look at whether they are getting enough sleep and nutrition. On the flip side, are they doing too much? If they are taking part in physical activity at school and have something on most days after school, they could be doing too much leading to fatigue.

What causes pain and can exercise help?

Pain is a very complex area and is not fully understood. Chronic (long-term) pain is thought to be caused by a mix of localised pain in tissues (for example, coming from loose or damaged joints) coupled with the influence of past experiences and emotions leading to a sensitisation of the nervous system. Chronic pain can be moderated by exercise but it needs to be carefully managed. This is where pacing comes in. Research by Jane’s team has shown that, as people get stronger, their pain decreases.

How long does reconditioning take?

A person without EDS or symptomatic hypermobility who is doing a rehabilitation or strengthening programme would usually expect to see significant improvement in eight to twelve weeks. However it can take 6-12 months to see much larger gains in function, energy and pain relief for those who have long standing problems.

Sticking with it

Getting family and friends to support you with your exercise programme can be a great way to encourage you to stick at it. Can you do any activities as part of a group? For children, they may be more likely to be active if there is something the whole family can do together, rather than them being singled out to do their exercises. Maybe other members of your EDS UK support group could provide some encouragement and support!

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