Managing your condition

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Researchers have not yet identified the optimum amount, and type of physical activity or exercise for people with muscle wasting conditions. However, it’ is widely agreed that being inactive is harmful to health and being active in whatever way you can be, is good for you. Here is the information that we have.

Mental health refers to our emotional, psychological, and social wellbeing. Our mental health impacts on our thoughts and feelings, and how we act and behave. It also influences how we respond to stress, how we interact with others, and the choices we make.

Fatigue is a feeling of constant, overwhelming exhaustion, and weakness. It is a symptom of underlying conditions and not a condition itself. This means that it’s quite common for people with neuromuscular diseases to experience fatigue.

If you have a muscle wasting condition and have difficulty moving around, or you need support to maintain your position when upright or with repositioning, you may be at a greater risk of developing problems with your posture.

For most people affected by muscle wasting and weakening conditions, the pathway to getting a diagnosis starts with seeing your GP. Following that appointment, you may be referred for further tests which may help to determine a diagnosis.

Vaccinations help protect you from certain illnesses and
support your health when living with a muscle wasting condition.

Pressure ulcers, also known as bed sores or pressure sores, are areas of damage to your skin and underlying tissue that develop from lying or sitting in one place for a long time without moving.

Sometimes you may need to have a local or general anaesthetic for a medical procedure. If you have a muscle wasting or weakening condition or a family history of a muscle wasting or weakening condition, it’s essential to let your anaesthetist know in advance so they can carry out appropriate tests and take necessary precautions.

Many muscle wasting conditions affect the muscles you use to breathe and cough. This can cause a range of symptoms, from very mild to more severe. It’s important to tell your healthcare team about any symptoms you experience. Treatment can help prevent chest infections and more serious breathing problems.

The heart can be affected in some muscle wasting conditions. Your doctor or neuromuscular team will tell you if you need heart tests and how often. These tests can find problems early so treatment can start sooner.

Planning a family can raise important questions if you’re affected by a muscle wasting condition. Pregnancy, genetic testing, and carrier status can all play a role. It’s important to speak to your healthcare team so you can understand your options and get the right support at the right time.

Statins are medicines that lower your chance of getting some heart and circulation conditions. Many people with muscle wasting conditions can take them. Sometimes, doctors may suggest a lower dose or extra check-ups to help prevent muscle problems.