Many people living with neuromuscular conditions suffer greatly from fatigue. Lack of understanding from doctors and wider society make this symptom particularly challenging.
It’s estimated that 70% of people living with muscle-wasting conditions also suffer from fatigue, however there is a vast disconnect between this and support offered.
To help those with neuromuscular conditions cope with fatigue, we have created the ‘Fatigue management for people with neuromuscular conditions’ resource.
“Fatigue has been a significant part of living with a muscle-wasting condition for me and it has taken over my life. Since retiring from full-time work, I have been in a better position to prioritise what I do and control my fatigue, but the support for fatigue as a condition is patchy,” says Hilary Irwin, who lives with mitochondrial disease.
Fatigue is often overlooked as a condition in itself because it’s often a symptom of other conditions. MDUK’s new fatigue management document is vital to increasing awareness. It covers so many aspects of fatigue and signposts for further advice, which is of enormous help to those affected.
Our resource is designed to help people manage their symptoms of fatigue, as well as remind them that they are not alone. The lack of awareness of the condition can sometimes lead to feelings of isolation, but we hope to show there are others out there who understand, and we’re always here to support you.
“I have found it very isolating at times living with fatigue and the document reinforces the fact that you are not the only one dealing with it,” adds Hilary. “It’s also vital that it is widely available and promoted in the healthcare sector.”
Watch our latest Muscles Matter webinar with Pamela Appleton, Neuromuscular Care Advisor, as we discuss the issue and how our handbook can help.
You can also contact our helpline to access our peer support service, and speak to someone who understands what you are going through - 0800 652 6352.