Pain is experienced by as many as two thirds of people with MS. People in the advanced stages of MS can have pain related to spasticity, infection, pressure sores, headache, muscle contractures, as well as muscle and bone pain that can come from their limited ability to move.
Survey studies of MS pain tell us that people with greater disability scores or advanced MS, and those with greater time from diagnosis, are more likely to experience pain.
In this section we discuss the possible sources of pain in advanced MS and ways to treat it and cope with it. Pain is usually all-consuming and miserable for the person experiencing it and very distressing for family members to observe. Pain deserves serious attention from both Care Givers and health care providers, particularly GPs and nurses.
- Excruciating, sharp, shock-like pain in cheek and forehead, lasting seconds to minutes (trigeminal neuralgia)
- Brief muscle twitching or sudden, sharp muscle spasm; may also burn or tingle (tonic spasms)
- Painful burning, aching, or itching of any part of the body, more common in the legs
- Migraine, tension, or cluster headaches
- Pulling or dragging pain on eye movement (optic or retrobulbar neuritis)
- Chronic burning, tingling, tightness, a pins-and-needles feeling, or a dull warm aching.
- Muscle cramping, pulling and pain (spasms)
- Pain caused by the physical stress of immobility (musculo-skeletal pain).
- Pain caused by MS treatment, such as steroid-induced osteoporosis, interferon side-effects, injection site reactions.
- Pain associated with pressure sores, stiff joints, muscle contractures, urinary retention, urinary tract infection, and other infections.
You can ask if pain exists and how severe it is on a scale from 0 (no pain) to 10 (worst pain of my life). Facial expressions, such as grimacing, frowning, looking sad, or wrinkling the brow can be an indication of pain. Note if there is clenching fists or pulling at or touching a body part or area. Pain can also be assessed by observing usual activities. Look at the ability to rest and sleep, and the ability to enjoy family, friends, and recreational activities, such as watching television and reading.
The website mypainfeelslike.ie contains resources which may help you and your loved one to describe and understand MS pain, and explain it accurately to medical professionals so the best course of treatment can be prescribed.