People living with multiple sclerosis (MS) can present with a wide variety of symptoms, from motor and cognitive issues to physical and emotional changes. Some people with MS experience significant pain or stiffness in their back and neck.
“Is having a sore (stiff) neck a symptom of MS?” asked one MyMSTeam member. “It’s been two weeks, and I’m not getting relief. I’ve used a body bar, slept on a heating pad, and have done neck massages, but it’s still there. Any suggestions?” Another member replied, “Me too! I get constant headaches too from it.”
If you find yourself struggling with stiffness in your neck, you’re not alone. Here is what you need to know about this symptom, including what it feels like, what causes it, and how it can be managed. As always, talk to your health care provider if you experience new or worsening neck discomfort with MS.
Several MyMSTeam members have shared their experiences with neck stiffness. “Does anybody else during their bad MS flares get stiff in the neck?” asked one member. “Yes,” another replied, “my neck gets stiff often.”
One member described developing “what felt like a stiff neck,” despite maintaining a full range of motion in her neck. She 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!”
Another member asked others, “I have had a stiff, painful neck for two weeks. First, I thought I must have been lying in bed wrong, but it hasn’t been getting better. I wondered if it is MS-related and if anyone else is having this?”
One member noted that neck pain is accompanied by other head and face pain, writing, “Does anyone have facial pain? It almost feels like tooth pain, face pain, a headache, ear pain, shoulder, neck, and back pain all in one. It hurts so bad, I can’t even eat.” Another member shared a similar experience: “I get severe pain in the back of my neck and my shoulder blades.”
Neck stiffness and pain may feel different for different people. “I woke up a few days ago,” one member explained, “and I have such horrible stiff shoulders and neck! I never hurt myself that I’m aware of … it feels like the muscles in my back are pulsating.” Another shared that they experienced neck pain that “gradually spread to my shoulders, and yesterday, I felt it moving down to my hands. Is it MS-related?” they asked. “The severity of the pain is not always the same, but there is always pain in one of the above parts.”
Physical pain is a common symptom of MS, although the type, location, and severity of pain may differ between individuals. Furthermore, pain in MS is not directly related to the amount and location of lesions in the central nervous system (brain and spinal cord). Pain could be acute, chronic, or related to spasticity, and people may have musculoskeletal pain, muscle spasms, burning, or aching.
One study found that more than half of those with MS experienced significant pain at some point in their life because of MS. That same study showed that almost half of those with MS struggled with chronic pain as a result of their condition. These pain symptoms included everything from “hot, prickling pain” to dull aches and mild discomfort.
Back and neck pain are not unusual MS symptoms. In fact, an estimated 10 percent to 16 percent of individuals with MS experience back pain, and certain sensations in the neck, such as Lhermitte’s sign, can help to diagnose MS.
Although it may be helpful to know that you are not alone, if you are experiencing these symptoms, you might wonder what exactly is causing your pain and how you can best alleviate it.
Stiffness in the neck and back can stem from several sources, some of which may not be directly tied to MS itself. Age-related wear and tear can negatively affect the spinal disks in your neck, resulting in a condition called cervical spondylosis, as well as the development of osteoarthritis and even bone spurs. These conditions rarely require surgery and can often be treated effectively through nonsurgical methods.
When MS does play a role, immobility may be to blame for neck stiffness. The National MS Society states that MS can interfere with and negatively affect mobility, resulting in fatigue, dizziness, numbness, or pain in one’s limbs. People with MS may also experience issues with coordination, walking, and vision. This can make it more difficult to stay active, depending on the severity of your symptoms. A lack of mobility and frequent exercise or activity can then lead to muscle and joint stiffness, causing pain or discomfort in the neck and other parts of the body.
Lhermitte’s sign is a condition often considered a symptom of MS, although it can also occur in other conditions. Those with Lhermitte’s sign may feel a sensation, similar to an electric shock, passing down their neck, spine, and into their arms and legs. Also known as barber’s chair syndrome, this symptom is often triggered by moving or bending one’s head toward the chest.
This condition is different from general neck stiffness. If you find yourself experiencing similar sensations or think you may have Lhermitte’s sign, talk to your doctor or neurology specialist. Lhermitte’s sign is classified as a type of nerve pain that is not life-threatening, but the sensation may cause varying degrees of pain or discomfort.
There are several ways that neck stiffness and pain can be treated with MS. If you start experiencing neck discomfort, consult your neurologist or health care team. They will be able to determine the cause and work with you to find the best treatment options or interventions for managing it.
In the event of inflammation, anti-inflammatory medications can help alleviate neck pain and stiffness. Medications such as duloxetine (an antidepressant and nerve pain medication), tramadol (a pain medication), lidocaine patches (pain medications), and others can help to manage chronic pain symptoms. Muscle relaxants may also help to relieve muscle stiffness and resulting discomfort. Others may find relief with less conventional treatments such as acupuncture and biofeedback.
Physical therapy and activity may benefit you if your neck stiffness stems from a lack of mobility. Your neurologist may refer you to a physical or occupational therapist. These specialists can devise an exercise regimen that works for you without making your MS symptoms worse. The Cleveland Clinic also recommends stretching and aquasize (water aerobics), which can be useful if you struggle with mobility due to other forms of chronic pain.
Managing your MS symptoms can be difficult, but you don’t have to do it alone. MyMSTeam is the social network for people with multiple sclerosis and their loved ones. On MyMSTeam, more than 186,000 members come together to ask questions, give advice, and share their stories with others who understand life with MS. Before long, you will be part of a community from around the world that understands life with multiple sclerosis.
Do you experience neck stiffness with MS? How do you manage it? Share your story or thoughts in the comments below or by posting on MyMSTeam.