Persistent Pain and ME∕CFS

Many people with ME CFS can also experience chronic pain, particularly neuropathic or nerve pain. If we think about the fatigue pie, this may also be part of the increased sensitivity experienced by those with ME/CFS.

A man holding his neck in pain

  • What is Pain?

    Pain is often described as an unpleasant physical and emotional experience, which is often connected with actual or possible damage or indication that something is wrong. It is part of the body’s protection system. For example, when we are young, if we touch something hot we pull our hand away, and it teaches us not to do this again. Because of this, pain is actually very important and necessary to keep us safe in our lives.

    Pain is also a complicated process involving our nervous system, which includes our nerves, our spinal cord, and our brains. Our nerves are designed to notice what is happening in our body or around us, for example if something is hot or cold, or touching our skin. This information is then sent to via electrical signal to the spinal cord and onwards to the brain. In the past, it was thought that pain travelled one way – from a nerve injury up to the brain.

    However, we now know that the brain has the ability to act like a ‘control centre’ that has to make sense of this information. It also controls what messages are received or sent out of it and it can even send messages to block painful sensations in different parts of the body.  For example, some nerves are specialised to respond to danger like something sharp against our skin. Your brain can receive this information, and send a message to take action to protect yourself. It often does this by producing the sensation of ‘pain’. You can think of pain like an ‘alarm system’ in the body, that is designed to protect it when it is under threat.

  • What is the difference between acute and chronic pain?

    Everyone will experience acute pain at some point in their life. This is short lasting pain that is there for less than three months. Acute pain usually acts as a warning of threat to the body, and is often telling us to protect ourselves and then rest so we can heal. It can occur after an injury, or sometimes it can be a headache for a day, and it is relieved when the underlying cause is treated or has healed.

    Persistent pain is different. It lasts longer and can be there even after an injury has healed, or sometimes when there was no injury at all. This type of pain is more to do with our central nervous system. Some examples of persistent pain could be pain from fibromyalgia, persistent back pain, or pain related to arthritis.

    Because our mind and nervous system can adapt and change, it can become more sensitive and undergo several changes, a little like turning the ‘volume up’ on our pain system like a radio stuck at full volume (remember, the nervous system is often more sensitive and over stimulated in ME/CFS as well). The longer the nervous system produces pain, the better it gets at producing it. Our nerves become more sensitive, which means the ‘alarm’ might go off more easily. Our spinal cord can become better at sending these messages to the brain, a little like turning the volume up on pain. Also, our brain can pays more attention to those painful areas of our body.

    The important point is that persistent pain is not a warning of threat or damage to the body, and is not telling us to protect ourselves. It can be thought of as our nervous system becoming over protective of us, but it is no longer providing us with helpful information.  

  • How can I live well with pain?

    Living with persistent pain can be thought of in a similar way to living with ME/CFS. In the past, your focus has probably been on trying to ‘treat’ or get rid of pain. Many of you will have tried to do this at personal cost in energy, time, money or the impact this has had on your relationships and other areas of your life.  This may not have been as successful as you would like, and it can be helpful to think about how we can ‘expand our lives’, not reduce our pain.

    One thing that can help us live well with pain is to think about how we can act towards our values in life, and thinking about acceptance and changing our relationship with pain in relation to ME/CFS.  

    When we experience pain, it can also be emotionally and physically stressful, which can leave us feeling tense. Unfortunately, tension and stress, which can feel uncomfortable and unpleasant themselves, can also increase or cause additional problems. It can worsen our pain, impact on our fatigue, our sleep and concentration, and it can also impact on our stomach and digestion.

    Relaxation can help us find a way to help soothe our bodies and helps to let go of some of the physical and emotional tension we might be holding.  There are many was to relax, including walking, having a warm bath, listening to music, and what helps you may be different to what someone else finds relaxing.

    In addition, planned purposeful relaxation, which is different to a relaxing or pleasurable activity, can help us to calm both body and mind.  The more we practice relaxation, the easier these skills get and the more effective they become.