Pain

More than 50% of individuals with multiple sclerosis identify pain as a significant symptom. For many years, the medical community did not support the idea that pain could be caused by the effects of multiple sclerosis, but physicians today recognize that pain is a common symptom.

MS Pain Overview

Multiple sclerosis pain is mixed and may be divided into two different types. Pain from multiple sclerosis can be a direct result of damage to the nerves (referred to as “axons”) of the central nervous system (CNS), which consists of the brain and spinal cord. This first type of pain is referred to as “neurogenic,” and is caused by one or more lesions in the CNS. This type of pain may be intermittent or steady; spontaneous or evoked.

A second type of pain is associated with living with disability and its effects. This is referred to as “nociceptive.” Caused by any mechanism that stimulates a pain response, it can be mechanical, thermal, chemical, or electrical. Examples of this type of pain include musculoskeletal pain, lower-back pain, painful spasms, pain related to urinary-tract infection, pain of pressure sores, and even pain associated with disease-modifying therapies, including injection-site reactions.

Please see Types of MS Pain later in this section for additional information.

Monitoring MS Pain

The first step is to acknowledge your pain; only you know how severe and persistent it is. The key is to work with your doctor to develop a pain-management plan. Chronic pain can become a quality-of-life issue, affecting not only how you feel, but also how you live your life. If pain continues despite treatment, you should ask to be referred to a pain center, specifically one that is experienced with treating individuals with MS and can offer a team approach.

Pain with multiple sclerosis is a complex problem involving many issues. Keeping a “pain diary” and describing precisely how the pain feels, where and when it occurs, and what factors increase, decrease, or change the pain, are crucial to an accurate diagnosis and optimum treatment plan. With a pain diary, you will be able to share with your doctor specific details about your pain that you might not otherwise recall or realize. To follow are some guidelines to what your medical professional will want to know.

The acronym OLD CART is used in medical schools and nursing schools to assess pain:

Onset – when did your pain begin?
Location – where does your pain occur?
Duration – how long do your painful episodes last?
Character – describe how the pain feels, i.e., is it sharp, dull, aching, burning, tingling, throbbing, etc.?
Aggravating [factors] – what makes your pain worse?
Relieving [factors] – what makes your pain better?
Treatment – what are you doing, using, and/or taking to relieve your pain?

Please note that a few variations of OLD CART are used, including “OLD CARTS,” which adds an “S” for Severity (to rate the severity of the pain on a scale from 1 to 10).

Pain is also assessed by function on a Pain Effects Scale, which evaluates the impact of pain on one’s quality of life. Factors considered include the following:

Mood
Ability to walk and move around
Sleep
Recreation
Enjoyment of life

Types of MS Pain

Pain is a significant symptom for more than half of individuals with multiple sclerosis. As noted earlier in the “MS Pain Overview,” within this population, pain falls under two different categories.

Neurogenic Pain

This type of pain lies within the axons (nerves) of the CNS that are either inflamed or are malfunctioning after the protective layer of myelin has been damaged. Nerve impulses may go off-track and spread to adjacent damaged nerve fibers, or nerve cells may become over stimulated and misfire. This type of “nerve excitability” is irritating to the nerve cells within the brain and spinal cord, often causing sudden and sharp pain. The sensation can be lightning-like and intermittent, or it can be a burning, tingling, or a tight, “hug-like” feeling that can be continuous.

Surveys for patient pain indicate that the most common pain syndromes experienced in multiple sclerosis are: continuous burning in extremities; headache; back pain; and painful tonic spasms.

Continuous MS Pain Syndromes

Examples of continuous multiple sclerosis pain syndromes include:

Steady dysesthetic pain, which is a burning, tingling, or tightening sensation, usually occurring in the legs and arms, but sometimes in the body; it is the most common chronic pain syndrome; it can be dull, nagging, or have a prickling sensation associated with warmth; it tends to be worse at night and after exercise; it is also aggravated by changes in temperature
Severe spasms and spasticity (muscle tightness caused by impaired nerve impulses)

Intermittent MS Pain Syndromes

Examples of intermittent multiple sclerosis pain syndromes include:

Chronic headaches, experienced by up to one-third of patients; more than half of these individuals (54%) report headaches as a symptom at the time of diagnosis; migraines are three-times more common in MS than in the general population; headaches are not associated with disability or lesion burden
Lhermitte’s sign, a shock-like sensation down the spine and legs when the neck is flexed; approximately 40% of individuals with multiple sclerosis experience this type of pain, although it usually does not require any treatment
Optic neuritis, causing shooting pains in the eye
Trigeminal neuralgia, a sharp facial pain brought on by a light touch or movement (occurring in roughly 2%-to-5% of individuals with multiple sclerosis); up to one-third of these episodes can be bilateral (occurring on both sides of the face)

Nociceptive Pain

This type of pain is usually less intense but can be long-lasting. For instance, weakness on one side of the body will cause someone to favor the other side and develop stiff joints; muscles can become twisted and cause the body to be unbalanced, frequently leading to muscle and joint pain.

The same is true for spasticity (muscle stiffness) and spasms, as well as poor posture, with pain often occurring in the lower back. Even medications can sometimes cause painful side effects such as injection-site reactions, steroid-induced osteoporosis, and degenerative joint disease.

Treatments for MS Pain

Reviewed by MSAA Chief Medical Officer Barry Hendin, MD