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Multiple sclerosis (MS) affects everyone differently. No two people have the exact same symptoms or experiences with the disease. Since MS affects the nerve cells in the brain and spinal cord, you may have a wide range of symptoms. Some are visible and can be seen by others. Others are invisible and are only seen or felt by the person with MS.
Through our MS Symptom Series, we’ll provide some information and tips about different symptoms to discuss with your healthcare team. Remember, your healthcare team should be your primary source for information or any questions.
Pain is often referred to as an “invisible” symptom of multiple sclerosis (MS). Unlike other MS symptoms, pain cannot always be seen. Someone sitting next to you may not know your leg is aching from your MS because you may appear fine. Everybody experiences pain differently, so how do you begin to describe it? While pain is a physical MS symptom, it can also have an emotional impact. But there are ways to help handle that, starting with open communication.
Over half of people living with MS have reported pain as a significant symptom. For people with MS, pain is often categorized by how long it lasts. When the pain is of short duration it is referred to as “acute.” When the pain is long lasting and persistent, it is considered “chronic.”
Understanding the types and causes of pain for people with MS, and paying close attention to how you experience pain, can help you work with your healthcare provider to find ways to handle it.
There are two types of pain that people with MS may experience:
Nerve (neurogenic) pain
Nerve pain, or neurogenic pain, is a direct result of damage to the nerves caused by MS. When nerves are damaged, it can interrupt the signals sent to the brain, which can result in the experience of sudden and sharp pain.
Some of the most common types of nerve pain in MS are:
- Trigeminal neuralgia: Stabbing pain on one side of the face. Many people describe this as a “lightning-like” sensation
- Lhermitte’s sign: An electric shock–like pain in the neck and spine that may occur when the neck is bent forward. It usually lasts for a few seconds
- Optic neuritis: A sharp pain behind the eyes that can sometimes cause vision problems
- “The MS hug”: A tight feeling or the sensation of being squeezed in the chest, head, hands, feet, or legs
- Dysaesthesia: A painful altered sensation, often described as “pins and needles,” prickling, burning, itching, aching, or numbness
Musculoskeletal pain
Musculoskeletal pain, or nociceptive pain, is a physical effect of damage to the muscles, ligaments, tendons, and soft tissue. A common example of this type of pain is when your back hurts from sitting in a chair too long. Sometimes pain, especially musculoskeletal pain, isn’t MS pain. It can just be lower back pain or a headache that really hurts.
Musculoskeletal pain is frequently not as intense as other types of pain. However, it can last longer. Spasticity, or “muscle stiffness,” can lead to musculoskeletal pain. Often, this type of pain is brought on by changes in your posture or the way you walk.
Even though pain is a common MS symptom, everybody’s experience with it is unique. That’s why it’s important to talk to a healthcare provider. Together, you can come up with a plan that matches the nature of your pain, based on your needs. There are many ways that pain can occur, so it is important to stay aware of what your body is feeling.
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