"It hurts to walk. It feels like a huge ball pressing against the heel of my foot." That's how a former office manager describes the feeling. She also feels an awful tightness around her knees when she's sitting down, so much so that she gets up to move around, only to have the heel pain kick in.

Hot, prickling pain around the waist bothers a practicing architect. A retired Head Start nurse has pain in her shoulders and neck that began about a year ago, six years after she was diagnosed. "It's a dull, achy feeling that's pretty much continuous, but worse in the morning."

A volunteer for the National Multiple Sclerosis Society said she has spasms that tighten her leg muscles and exhaust her. Another man described his leg pain as feeling "like a toothache." His pain was worse at night and when the weather changed.

All these comments came from just one MS clinic, in Philadelphia. Similar stories can be heard throughout the MS community.

Pain syndromes are not uncommon in MS. In one study, 55% of the people studied had what is called "clinically significant pain" at some time during the course of a lifetime with MS. Almost half (48%) were troubled by chronic pain.

This study suggested that factors such as age at onset, length of time with MS, or degree of disability played no part in distinguishing the people with pain from the people who were pain-free. The study did indicate that twice as many women as men had pain as part of their MS.

If you feel pain, it's important to communicate that information to your physician. Describe the symptoms and the degree of severity you feel as clearly as possible because treatments vary. And treatment is essential. Treatment can help prevent pain from taking over a person's life.

Pain that occurs as a result of nervous system disease is different from the "good" pain that serves to protect the body from further injury. There are nerve endings sensitive to pain all over the body, which sound an alarm to the brain when something is harming or about to harm it. The brain normally responds so quickly that a person has already withdrawn the fingers from the hot stovetop before realizing consciously what happened. This is functional pain at work, preventing severe injury.

In more serious events, such as a sprained ankle or a broken bone, pain sounds a general alarm designed to make the individual rest and let the body heal. This, too, is functional pain, pain with a purpose.

In contrast, "chronic" or recurrent pain - especially pain that occurs because of disease or injury of the nervous system - serves no useful purpose. It robs sleep, saps energy, dampens mood, and curbs appetite. In some chronic pain conditions, the constant barrage of pain nerve signals sensitizes the central nervous system (the brain and spinal cord) so much that a bad pain feels worse and even a light touch can hurt.

According to Dr. Stanley van den Noort, chair emeritus of the National MS Society's Medical Advisory Board, it's common for people with MS to have a relatively high pain threshold. "Many are not unusually sensitive, until their pain tops their threshold. Then it becomes very severe, and spreads into other areas," he said. For example, he has seen patients who feel the prick of a pin in the foot as a severe pain in the shoulder.

Pain in MS may be unusual in other ways. The central nervous system normally turns off many sensations from nerve endings throughout the body. As Dr. van den Noort explains, "I don't have to feel my socks, while I'm talking to you." But this blocking mechanism may be affected by MS damage, allowing information to flood in, and pain to result.

MS symptoms wax and wane and often there is no simple association between the location and number of MS lesions (damaged areas in the brain or spinal cord) and the kind of pain the person may be experiencing. No matter how odd MS pain may be, it is real pain, and causes real suffering and can lead to depression. Steps should be taken to relieve it.

What To Do

First, it's important for you and your primary care doctor to distinguish between MS pain and other kinds of pain. Having MS doesn't make you immune to headaches, cramps, arthritis, or low back pain. In arriving at a diagnosis, you and your doctor will need to consider the nature and source of your pain.

According to Dr. Randall Schapiro, director of the Fairview MS Center in Minnesota, "The Number One requirement for effective pain control is a proper diagnosis." He urges people to be "in tune" with their bodies, so they can explain or describe symptoms in a way that will aid diagnosis.

Several Sources and Types of Pain in MS

• Acute Pain
  Trigeminal neuralgia is a stabbing pain in the face that can occur at any time during MS, even as an initial symptom. While it can be confused with dental pain, this pain is neurologic in origin. It can usually be treated successfully with medications such as gabapentin (Neurontin®) or carbamazepine (Tegretol®). In severe cases that do not respond to medication, a surgical procedure called rhizotomy can be performed. This procedure severs the nerve roots that carry sensation.

  "Lhermitte's sign" is a stabbing, electric-shock-like sensation running from the back of the head down the spine, brought on by flexing the neck. Medication is of little use because this pain comes so quickly. A soft collar to limit neck flexion may be prescribed.

• Burning, Aching, or "Girdling" around the Body
  These sensations, called dysesthesias, are all neurologic in origin. These pains are sometimes treated with gabapentin (Neurontin®) or with antidepressants such as amitriptyline (Elavil®) because such agents modify how the central nervous system reacts to pain. Other treatments include wearing a pressure stocking or glove, which can convert the sensation of pain to one of pressure; and warm compresses to the skin, which may convert the sensation of pain to one of warmth.

• Chronic Pain
  Burning, aching, prickling, or "pins and needles" may be chronic rather than acute. The treatments are the same as for the acute dysesthesias described above.

• Pain of Spasticity
  This pain category has its own subcategories. Muscle spasms or cramps, called flexor spasms, may occur. Treatments include medications such as baclofen (Lioresal®), tizanidine (Zanaflex®), or other agents. Treatment also includes regular stretching exercises and balancing water intake with adequate sodium and potassium, as shortages in either of these minerals can cause muscle cramps.

  Tightness and aching in the joints are other manifestations of spasticity, which generally respond well to the treatment described above.

• Chronic Back and Other Musculoskeletal Pain
  This can have many causes in MS, including spasticity. Pressure on the body caused by immobility, incorrect use of mobility aids, or stress on the body from the struggle to compensate for walking problems may all contribute to this kind of pain. An evaluation to pinpoint the problem is essential. Treatments may include heat, massage, ultrasound, physical therapy, and treatment for spasticity.

Pain and the Emotions

One of the factors that can exacerbate pain is the fear that it is associated with a worsening of the disease. MS specialist, Dr. Jack Petajan of the University of Utah, said, "The severity of pain, and its location and extent, bear very little relationship to the extent or seriousness of the multiple sclerosis. To feel pain is a fearful experience, and it is common for people with multiple sclerosis to interpret their pain symptom as a serious deterioration of their condition. In general, this is not the case."

Complementary Treatments

Medication in combination with alternative therapies, such as biofeedback, hypnosis, yoga, meditation, or acupuncture may be used. Even if pain responds reasonably well to medication, therapies such as massage, relaxation, humor, music, and distraction can improve pain control and quality of life. A multidisciplinary pain clinic may be indicated for chronic disabling pain.

Self Help

People who stay active and maintain positive attitudes often seem to be able to reduce the impact of their pain. They also experiment with home remedies. Indeed, it is characteristic of many people with MS to look for ways to help themselves and to take action to reduce their pain.

The retired Head Start nurse finds using a loofa sponge and massaging with the soft ball of plastic netting supplied with a popular body lotion helps relieve her shoulder and neck pain. The Society volunteer works out with a personal trainer to ease her painful leg spasticity and keep her muscles in good shape. Another woman reported that she feels less pain after taking a nap, riding her stationary bicycle, swimming in cold water, or doing stretching exercises with her physical therapist.

"When I'm doing something I like, the pain doesn't go away, but I don't think about it as much," she added.

Chapters of the National MS Society may be able to refer callers to area pain clinics or specialists. See Additional Resources below.

Research on Pain

MRI and even newer imaging and microscopic technologies have been a boon to pain research, revealing the widespread distribution of pain pathways and pain centers within the brain. At the molecular level, pain researchers can now distinguish certain cells that transmit the normal "good" pain signals from the cells that are prominent in chronic pain.

Investigators are tracking each step in the chemical chain that begins when a molecule makes contact with a receptor on a nerve cell membrane and ends with signals inside the cell directing specific genes in the cell's nucleus to turn on or turn off.

With each new pain molecule or gene discovery comes the potential for developing a drug that might selectively target that molecule and suppress pain. The more selective the target, the less likely are undesirable side effects like constipation, nausea, or sedation.

New pain-relieving drugs, such as the anticonvulsant drug called gabapentin, are signs of the progress taking place in symptom management. Other pain relievers now being tested include drugs that act on a class of nicotinic receptor (the receptor that reacts to tobacco) and a drug that selectively blocks a gate that opens when a pain nerve cell fires an impulse.

The Fifth Vital Sign

New facts about chronic pain and its consequences are sparking general changes in how physicians will practice medicine. The Department of Veterans Affairs has begun a major initiative, asking VA physicians to record pain level as "the fifth vital sign" for every patient. An inquiry about pain will be added to the traditional 4 vital signs - temperature, blood pressure, and heart and respiration rates - taken during a standard physical exam.

Acknowledging that pain should be documented - and treated - is a major step in overcoming the all-too-common belief that pain is "all in your head". This is often accompanied by a "blame the victim" attitude that people who complain of pain are weak, depressed, want attention, or worse yet, just want drugs. This change in attitude comes at a time when the prospects for better pain treatments are also dramatically better.

Treatments for Pain

Additional Resources

An MS Specialty Center (call your chapter for a referral.)

American Chronic Pain Association
PO Box 850
Rocklin, CA 95677
Phone: 800-533-3231
Fax: 916-632-3208
E-mail: ACPA@pacbell.net
URL: www.theacpa.org

Trigeminal Neuralgia Association
2801 SW Archer Road, Suite C
Gainesville, FL 32608
Phone: 352-376-9955
Fax: 352-376-8688
E-mail: tnanational@tna-support.org/
URL: www.tna-support.org

Sources for this publication:

1. The National Multiple Sclerosis Information Sourcebook, © 2000 National MS Society.

2. "When MS Is Really a Pain", by Joan Wilentz, InsideMS, Summer 1999, Vol. 17, Issue 3.

3. Charts prepared by Heidi Maloni, MSN, CNRN, CRNP. April, 2001.

4. Veterans Health Admin. (VHA) National Pain Management Strategy www.va.gov/oaa/pocketcard/