Multiple sclerosis (MS) is a chronic disease that causes a range of symptoms. Several members of MyMSTeam have reported experiencing pain in areas like the collarbone, neck, and jaw. Pain in these locations could be associated with MS or related to other conditions or injuries. Talking to your MS specialist is vital to help identify what’s causing pain and how best to manage any new or worsening symptoms.

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. It occurs in both primary and relapsing MS. “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.”

Several types of pain, some of which could involve the collarbone, neck, and jaw, affect people who have MS. Read on to find out possible causes of neck, jaw, or collarbone pain, as well as how others with MS have described it.

People experience pain with MS in different ways. Some have discomfort in their neck, collarbone, and jaw, while others experience pain in the shoulder or other areas. Still, others experience MS in entirely different ways.

There aren’t many statistics available on collarbone pain and multiple sclerosis, but a few members at MyMSTeam have reported this. “My collarbone and neck were hurting last night,” one member explained, “So I used Icy Hot. I feel much better today.”

Sometimes, this pain comes along with other symptoms of multiple sclerosis, like it did for one member who said, “I’m having pain on my collarbone, and my balance is not the best at all.”

For some, the pain seems to be isolated at the collarbone. For others, collarbone pain comes along with other types of pain. “I have pain when trying to use my hands that goes up to my collarbone,” one member shared.

Neck pain is relatively common in MS. A number of people at MyMSTeam have described it. One said, “Is having a sore neck a symptom of MS? It’s been two weeks, and I’m not getting relief.” Another added, “When I turn my head to the right, I have pain from what feels like the back of my ear to the back of my head. Lifting my head off the pillow feels like the absolute worst!”

In one study of 223 people with MS, more than 55 percent of participants had musculoskeletal pain, and over half of those had neck pain. Neck pain is something that many people who live with multiple sclerosis deal with. If you have it, you aren’t alone.

Another study found that nearly 90 percent of people with MS experienced oral or facial symptoms. Among them, 13 percent had a type of pain called trigeminal neuralgia (discussed more below), which can affect the jaw.

A few members of MyMSTeam have reported jaw and mouth pain. “I can’t even open my mouth too wide to eat,” one said.

When the pain gets so bad you can’t eat, it’s definitely time to talk to your neurology provider to find out what’s going on and what you can do to feel better.

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

Approximately 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. Anyone can experience trigeminal neuralgia, but for people with MS, the condition can be the cause. MS-related 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 spinal cord and 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.

While pain is a common symptom of MS, there are other potential causes of pain in the collarbone, jaw, or neck. They include the following.

Injury

Anyone, whether or not they have MS, can experience pain from an injury, such as a strained neck from a pulled muscle. People with MS may be more prone to injuries because of symptoms like muscle weakness and poor balance.

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 walking and balancing difficulties can make being active more difficult. 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.

Other potential causes of pain in the collarbone, jaw, or neck include some headache disorders and inflammatory problems.

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.

In general, it’s important to ask your MS specialist about any symptoms that are new or worsening. Whether they end up being caused by MS or not, it’s your health care provider’s job to figure out what is going on and help you find a treatment that works.

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. Taking care of pain can help improve your quality of life, help you sleep better, and even make things like traveling easier.

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 options for trigeminal neuralgia, for example, include carbamazepine (Tegretol), gabapentin (Neurontin), and pregabalin (Lyrica). Your neurologist might also recommend a muscle relaxer called baclofen (Lioresal).

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 217,000 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 experience in the comments below, or start a conversation by posting to your Activities page.