First and foremost, do not panic. Myasthenia is rare but it is also manageable. With proper care and medication it can usually be tamed so that you can get on with your life.
Myasthenia means muscle weakness. It affects the muscles that let you move but not the automatic ones like your heart that you don’t have to think about. Your brain tells your muscles to work, but the message doesn’t get through.
In a few cases this may be caused by gene faults you were born with (Congenital myasthenia or CMS). More people develop during their life (Myasthenia Gravis or MG; Ocular MG or Lambert Eaton Myasthenic Syndrome or LEMS).
MG and LEMS are autoimmune conditions and antibodies which normally fight infections go wrong and attack the communication system between the brain and your movement muscles.
The symptoms of myasthenia include muscle weakness which makes day to day activities like walking, smiling and talking very difficult. When swallowing and breathing are effected and this can lead to medical emergency.
We think there are around 10-12,000 people with myasthenias in the UK and Ireland but at the moment there are no accurate published figures.
In time you will learn how to live with your condition without it taking over your life. As one member said ‘I have myasthenia, it doesn’t have me‘.
Everyone is different. Cases can be mild or debilitating and there may be periods of relapse and remission.
Myaware is a fantastic resource for anybody who has just been diagnosed with the condition and for the family and friends who are indirectly affected. Whether you’re looking for a simple explanation or for all the information you can lay your hands on we’ve got it covered. Start with our simple fact sheets and then visit the medical resource centre to read up on the latest research and find out what you need to know about managing your symptoms and getting the best out of your treatment.
Our top tipsEat well, rest well
A well-balanced diet and plenty of rest really can help to keep your condition under control. Notice which foods work for you. You may also find a food diary useful as you will notice patterns. One patient kept a diary and realised that her weekly takeaway was making her ill. The MSG (monosodium glutamate) was a trigger for her myasthenia.Rest
When it comes to myasthenia, the more you rest the more you can do. You may find relaxation techniques such as mindfulness or meditation useful as well as gentle exercise such as Tai Chi. Many people learn to pace themselves and decide on which are the important things for them to do, and which are not. Making time for rest is important and can make a big difference to living with myasthenia. Our benefits officer can advise members who are in employment or education on how to work with their boss or college to make this possible.Cook in batches
If you enjoy cooking, cook extra on the days when you feel up to it and freeze it then you will always have something nutritious to microwave on a bad day.Keep an eye on the weather
Don’t get too hot or too cold. And where possible avoid being out in extreme weather conditions. Changes in temperature can have a noticeable effect on muscle function.Pace yourself
Tackle the harder jobs when you expect to be at your strongest, for most people this will be the morning. Many people learn to pace themselves and decide on which are the important things for them to do, and which are not.You’ll get better at your own pace
It’s best to take small steps to manage and mitigate the symptoms and improve your quality of life than it is to look for quick solutions.Learn to listen to your body
Do not push yourself too far. Recognise when you are starting to tire because this is when your condition is likely to be triggered. It’s hard to achieve a balance between doing something and doing too much but the stability is worth the effort.Communicate clearly
Myasthenia is very hard to diagnose. You can help your treatment along if you are able to communicate clearly with medical staff and avoid vague terms. Remember that everyone is different and your doctors can help you best if they understand how you are feeling.
Write down any questions or new symptoms that come up between appointments with your consultant or GP. You won’t then forget to ask anything. A daily record of how your myasthenia affects you is also useful when applying for any benefits, or talking to your employer.Make important calls early in the day
Make telephone calls first thing, straight after the medication has kicked in, then you know that you can use your voice at its strongest.A little help from your friends.
When people offer to help you, accept it. Having somebody around to lighten the load when you really need a rest will be invaluable to you.Accept
It is important to accept that you have myasthenia and that you will have bad days.Cut out salt
If you have been prescribed steroids cutting salt out of your diet can help to reduce bloating.Keep in touch with other people affected by myasthenia
Much as they want to family and friends might not always understand what it is like to live with the illness. Sign up to our community and chat to people who know what it’s like. Family and friends may also find it useful and are welcome to join our community too.Information is power
Read up on your condition. Come along to one of our conferences where you will find that you really aren’t alone. Get to grips with myasthenia.Stay positive
A bright outlook really can help you to work with your condition.Carry an myaware card
We provide a pocket sized card for you to carry and show to medical professionals. This acts as a starting point if you, for instance, go to the dentist’s and need to explain your condition and is very useful to paramedics should you need emergency treatment for any reason.
Have you got a tip you’d like to see added to the list? Join the myaware community and share your advice and information with others.