Pain is a common symptom of mitochondrial disease (mito). Signs and symptoms of pain can be both long-term (chronic) and short-term (acute). This information will explore ways to manage pain.
Summary
- Chronic pain is common in mito. The most common type of pain is nerve pain. But it may also be headaches, neck pain, abdominal pain, muscle pain, and general pain.
- The impact of chronic pain on daily life differs. For some, it makes daily activities significantly harder, impacting their wellbeing.
- Pain management can be a combination of treatments that suit your needs.
- Pain management should include a personalised plan created with your health professionals to help manage your pain.
- Seeing a pain specialist requires a referral from a general practitioner (GP).
- Pain specialists can offer specialised treatments and ongoing support.
What is pain?
The word pain describes an uncomfortable feeling in your body. It happens when special nerves, called nociceptors, detect tissue damage. They relay messages along the spinal cord to the brain.
Pain can range from annoying to debilitating. It may feel like a sharp stab or a dull ache. Or it may feel like throbbing, pinching, stinging, burning, or soreness.
Understanding pain and what to do about it
Watch Painaustralia’s video on understanding pain and what to do about it in less than 5 minutes.
Pain and mito
Chronic pain is common among people with mito, and it is more common than in the general population. Mito pain is usually nerve-related.1
Common areas of pain are:
Pain management strategies
Your health professional can work with you to improve your pain management. Regular reviews with different pain management strategies may be beneficial for you.
I deal with pain differently, depending on where the pain is and its severity. Sometimes, rest or stretching helps. If that doesn’t work, I might take pain medication when needed. I have specialist health professionals working with me on specific pain that I suffer, and together, we try to work out pain management plans tailored to my needs.
— Kim, adult with mito (2025)
Management strategies that
may be considered
(with varying medical evidence for efficacy)
Exercise and stretching
Massage
therapy
Acupuncture and
dry needling
Heat
therapy
TENS
machine
Cognitive Behavioral Therapy
Nutrition
Meditation
Creativity
I would encourage anyone dealing with chronic pain to listen to their own body and to allow themselves to take charge of how they manage their pain. Some remedies and treatments may work wonderfully for some, but not for others. They may work great today but not tomorrow or vice versa. Try not to give up, and keep looking for the things that will help you live the best life possible. Let your loved ones in and be gentle and kind to yourself.
— Kim, adult with mito (2025)
Pain management plans
Pain management plans are important when managing chronic pain. They are customised documents agreed upon by you, your health professionals, and the pain management team. These plans outline treatment goals and set timelines for achieving them. A multidisciplinary approach that combines medications, physiotherapy, exercise, and cognitive support is recommended.
You may also find that keeping a pain journal helps. In the journal, you can document pain history, causes, and severity. You can also document treatment outcomes and quality of life. This will help tailor pain plans for maximum relief. It will also help with day-to-day functioning.
Accessing pain specalists
To access pain specialists, speak to your health professional. The process usually works by:
Pain Australia is the national peak body working to improve the quality of life of people living with pain. Search their National Pain Services Directory for a service near you.
Health Direct's service finder can help you find health professionals and services in your area.
For more information and support, visit Painaustralia’s website and learn more about getting the right care.
MindSpot offers a free online pain course to learn practical strategies for managing chronic pain and improving your wellbeing.
Disclaimer: Resources provided by the Australian Mitochondrial Disease Foundation Limited (Mito Foundation), offers general information and is not a substitute for medical advice. It is essential to assess the suitability of the content for your individual circumstances and make decisions based on your medical condition. The information’s accuracy is subject to change, and we do not guarantee ongoing currency or availability. While efforts are made to ensure accuracy, Mito Foundation is not obligated to provide updated information. The copyright for this document and its content belongs to, or is licensed to, Mito Foundation, and reproduction without prior written consent is prohibited.
Acknowledgement: Mito Foundation acknowledges the valuable contributions of our reviewers. We thank Dr Christina Liang (Consultant Neurologist) MBBS, BSc(Med), FRACP for their review. As well as Diane, Kim, Michelle, and Pam, members of the mito community resource review panel.
Author: Mito Foundation
Version: 1
Date published: Wednesday 26 February 2025