Multiple sclerosis (MS) is a chronic disease that causes a range of symptoms. Several members of MyMSTeam, the online social network and support group for people with MS, have reported experiencing pain in areas like the collarbone, neck, and jaw. Pain in the collarbone could be caused by MS, but it could also be related to other conditions or injuries.

“I’ve been experiencing sharp stabbing pain in my jaw, neck, and collarbone,” said one member. Another responded, “I also experience a deep throbbing pain in my neck from time to time.”

Pain is a common symptom of MS — according to the Multiple Sclerosis Association of America (MSSA) over half of people with MS say that pain is a significant symptom. Several types of pain, some of which could involve the collarbone and neck areas, affect people who have MS.

What Causes Pain in the Collarbone, Neck, or Jaw in MS?

In multiple sclerosis, the immune system mistakenly attacks the myelin (protective covering) around healthy nerves in the central nervous system, which includes the brain and spinal cord. Inflammation and nerve damage contribute to various symptoms, like pain in different parts of the body. The following are types of pain that people with MS may experience in or near the collarbone, neck, or jaw.

Abnormal Sensations

People with MS might experience abnormal sensations, a form of nerve pain that can happen anywhere in the body. The sensations may feel dull or nagging, but in some cases, they may be painful. Unusual sensations of burning, tingling, or prickling represent the most common type of chronic pain in people with MS.

Severe Spasms and Spasticity

MS-related nerve damage can cause nerves to send messages or fire abnormally, resulting in severe muscle spasms (involuntary tightening) or spasticity (stiffness). Spasms can happen in any part of the body, such as the arms and shoulders (including the collarbone), making those muscles unusually rigid, tight, or stiff. MS-related spasms may also be very frequent and painful.

Trigeminal Neuralgia

Up to 5 percent of people with MS experience a type of facial pain called trigeminal neuralgia, according to MSAA. Trigeminal neuralgia occurs when the trigeminal nerve, which extends through the face and jaw, gets damaged. The damage may result in sharp, stabbing pain in the face, neck, and jaw area. Trigeminal neuralgia can also cause a constant aching or burning pain.

Lhermitte’s Sign

Roughly 40 percent of people with MS also have a type of pain called Lhermitte’s sign, according to MSAA. With Lhermitte’s sign, damage to the nerves in the cervical (neck) area causes a shocklike sensation or shooting pain down your spine when your neck moves or bends forward. This pain often extends to the legs and arms, which could include the collarbone and shoulder areas.

What Are Other Possible Causes of Pain in the Collarbone, Jaw, or Neck?

While pain is a common symptom of MS, there are other potential causes of pain in the collarbone, jaw, or neck. For example, muscle strain, lack of exercise, wear and tear, and corticosteroid use could all affect these areas of the body.

Injury

Anyone, whether or not they have MS, can experience pain from an injury, such as a strained neck from a pulled muscle. When people with MS have musculoskeletal pain, however, it’s likely due to MS symptoms — like muscle weakness and spasms.

Inactivity

Not getting enough exercise or movement every day can also lead to neck or back pain in people with and without MS. However, for those with MS, symptoms such as depression, decreased energy, and problems with balance and walking can make it more difficult to be active. These individuals may be more likely to experience inactivity-related pain and stiffness, which can be moderate to severe.

Osteoarthritis

People with MS can also have osteoarthritis, known as “wear and tear” arthritis. If you have osteoarthritis in your neck, you may experience moderate to severe stiffness, aches, and pain in that area.

Corticosteroid Use

On occasion, repeated use of corticosteroids (steroids) changes blood flow in areas like the shoulders, increasing the risk of injury and musculoskeletal pain. Since the shoulder attaches to the collarbone, it’s possible to experience injury and pain in that area from repeated corticosteroid use.

Talk to Your Doctor If You Have Collarbone, Neck, or Jaw Pain

Sharp, stabbing pain of the collarbone, neck, or jaw is a possible symptom of different medical conditions. In severe cases, the pain might be a symptom of a heart attack, which is potentially life-threatening. Contact a health care provider right away if you or your loved one has severe pain in the neck, jaw, or collarbone.

A doctor will ask about your symptoms, do a physical exam, and order tests to find the reason for your pain. Once they determine the cause, they can provide you with medical advice and next steps for treatment.

Managing Collarbone Pain With MS

If your collarbone pain is related to MS, your health care provider will discuss different ways to manage your pain, such as medication and physical therapy. Their suggestions may include the following approaches.

Routine Stretches and Exercises

In addition to relieving pain for people with MS, regular exercise can boost energy, lift mood, and improve heart health, among other benefits.

Acupuncture

Acupuncture may help reduce pain and other symptoms of MS, such as depression, muscle spasms, and numbness or tingling sensations.

Stress Management

Many people with MS say that stress makes their symptoms feel worse. A variety of approaches to manage stress, like finding a support network, can help calm your mind and body.

Certain types of pain, however, may require medication. Treatment for trigeminal neuralgia, for example, includes carbamazepine (Tegretol), gabapentin (Neurontin), and pregabalin (Lyrica). Your neurologist might also recommend a muscle relaxer called baclofen (Lioresal).

Find Your Team

Living with pain and other MS symptoms can be challenging, but you don’t have to face them alone. On MyMSTeam, the social network and online support group for people with MS and their loved ones, more than 193,000 members come together to ask questions, offer advice and support, and share stories with others who understand life with MS.

Have you experienced pain in your collarbone, neck, or jaw? Was it from MS, something else, or both? How did you manage the pain? Share your experiences and tips in the comments below, or start a conversation on MyMSTeam.