“Life is a beautiful thing. Pain is not so awesome,” one MyMSTeam member said. Another wrote, “Pain changes your life ... and it’s all invisible. It’s really hard a lot of times.”
Pain is a common symptom of multiple sclerosis (MS). Some research has suggested that up to 80 percent of people with MS experience pain at some point during the course of their disease. Pain may not come on until later in the disease’s progression — as another member shared, “I didn’t start having pain until five years after my medical diagnosis.”
MyMSTeam recently spoke with Dr. Barry Singer, director of the MS Center for Innovations in Care at the Missouri Baptist Medical Center, to help shed light on the many aspects of living with multiple sclerosis. He is the host of the MS Living Well Podcast and recently conducted a podcast episode on Pain and MS. Dr. Singer spoke about pain in MS, including what it feels like, why it happens, and how it is managed.
Note that it is also possible to experience non-MS-related pain, such as headaches and back pain, on top of your MS symptoms. It is important that you talk to a doctor if you have new or worsening pain. They will be able to determine the cause, and can work with you to find the best way of managing your pain.
There are two main types of pain in MS: neuropathic (nerve) pain, which is the most common, and nociceptive (musculoskeletal) pain. These types of pain are classified according to their underlying causes.
Neuropathic pain, also referred to as nerve pain, affects as many as one-quarter of people with multiple sclerosis. It occurs as the direct result of MS-related damage to the protective coating (myelin sheath) surrounding the nerves in the brain and spinal cord. This interferes with the nerves’ ability to transmit signals to the brain. This short-circuiting results in burning, stabbing, pins-and-needles, or squeezing sensations.
Nerve pain in MS may be either chronic (long-lasting) or acute (short-lived). Acute neuropathic pain, in particular, may present as one of the first symptoms of MS, or it can occur during an MS relapse (flare). Sometimes nerve pain can last seconds to a few minutes at a time, but then may keep reoccurring. This pattern is called paroxysmal nerve pain, and the treatment approach may be different than that of chronic pain. There are several types of nerve pain.
TN is caused by damage to the trigeminal nerve. Dr. Singer described this pain as “a shooting pain into the jaw, cheek, or forehand. It can be electrical, severe pain. I’ve had people who have had natural childbirth and kidney stones, and they say this pain is worse,” he said.
Another type of nerve pain in MS is known as Lhermitte’s sign. This presents with a brief electric shock sensation in the neck and spine, brought on by bending the neck forward. This sensation may sometimes be painful. Lhermitte’s sign typically results from MS-related damage to the cervical spine (neck).
Many MyMSTeam members are also familiar with the MS hug — a painful symptom of multiple sclerosis that feels like a tight band squeezing the chest or abdomen. The MS hug is believed to be caused by an immune attack to the thoracic spinal cord.
Some people with MS may also experience optic neuritis, an inflammation of the optic nerve, which connects the eyeball to the brain. Optic neuritis can cause an uncomfortable sensation behind either eye that is worse with eye movements and is associated with blurred or lost vision in the affected eye. This condition occurs when swelling damages the optic nerve. Optic neuritis can be one of the first signs of MS, or may occur during a relapse.
Nociceptive pain, referred to as musculoskeletal pain, results from damage to the body’s muscles, tendons, ligaments, or soft tissues. In MS, this pain may be caused by muscle weakness, stiffness, or difficulties with coordination. Hip and back pain, for example, may occur when a person with MS alters their gait (walk) to accommodate for muscle weakness or balance issues (known as a compensatory gait). Other people may develop muscle or joint pain as a result of muscle spasms, stiffness, or changes in posture.
Another type of pain commonly seen in people with MS is spasticity, or muscle tightness, Dr. Singer noted. Many people with MS experience symptoms of muscle tightness, cramping, stiffness, or spasms. These symptoms are often worse at night and can disrupt sleep. Severe, recurrent spasms of the arms and legs can be highly painful, but are usually responsive to treatment.
It is possible to experience pain as a side effect of medications for MS. Symptoms may include headaches or injection site reactions. Many MyMSTeam members have experienced the latter with self-injected medications. As one member shared, “the shot itself wasn’t bad, it was the pain — itching, burning welts that remained for five to 10 days later. I had a few lumps in my outer thighs that lasted for a few weeks, if not for a month, after stopping the injections.”
Another member shared that using an ice pack after the injection “helps numb the pain a bit, as it can get a tad intense at times.”
One member experienced pain after injecting a treatment in a sensitive spot: “The last time I injected it in my arm, I did it too close to my elbow. I hit a nerve. I was in agony. I sobbed for hours.” They noted that they “find the arms are really tricky to do” and advised that other members make sure they don’t “go too deep or too low” with the injection.
As always, if you experience any new or worsening side effects from your MS medications, let your doctor know as soon as possible.
While terms such as nerve pain and nociceptive pain describe why pain is occurring, pain in MS may also be described according to what it feels like. Spasmodic pain, which is commonly a result of spasticity and muscle spasms, may be brief, cramping, and intense. Paroxysmal pain (which is usually neuropathic) occurs in short, unpredictable bursts of severe, shooting pain.
More generally, neuropathic pain can cause many different sensations. As Dr. Singer describes, nerve pain typically feels like “burning pins and needles and tingling, stabbing, electrical pain. This can be in any part of your body. It could be random jolts of pain, or it could be more constant, burning pain and pins and needles.” Neuropathic pain may also cause feelings of numbness, burning, or crawling on the skin.
MyMSTeam members have described the many ways that neuropathic pain affects them. Some describe the pain as excruciating and say that it radiates down the side of the body. As one shared, “I have excruciating neuropathic pain in my right hip (buttock) that radiates down my leg, causing terrible pain in my calf and foot. My lower back is always in pain.”
Some MyMSTeam members have experienced joint pain with MS. Several have reported experiencing pain in their hands, like one member, who wrote, “My hands hurt ALL the time!” Another member wrote that they have a “burning pain” in and below both their knees, while another experiences “pain and numbness” in their right groin, leg, and knee. Numbness can sometimes occur alongside pain as the result of nerve damage and hypersensitivity.
There are many ways of treating and managing MS-related pain. Although medications are often used to manage pain, there are several other ways you can help alleviate pain without drug treatment.
Much of managing pain depends on working with your health care team to find the right solution. As one MyMSTeam member shared, “My doctors are very understanding ... They are good about sending me to physical therapy or prescribing medication if I need it for pain.”
Neuropathic pain is frequently treated with prescription medications including Neurontin (gabapentin) and Lyrica (pregabalin), Dr. Singer said. Cymbalta (duloxetine) is another good option, which works for nerve pain as well as anxiety and depression. One MyMSTeam member shared that they take gabapentin “for facial pain.” Dr. Singer noted that the anticonvulsants Oxtellar (oxcarbazepine) and Tegretol (carbamazepine) are other options for pain management (particularly when treating paroxysmal or shooting pain).
Some members of MyMSTeam report getting relief when they use ibuprofen or another over-the-counter (OTC) anti-inflammatory.
One member who takes ibuprofen for numbness and tingling in their toes, leg, or arm reported, “The tingling and numbness goes away within 20 to 30 minutes.” However, another member shared, “I took ibuprofen for about six months before I went to a doctor and found out I had MS, but it never really worked."
OTC medications can cause side effects and interactions with other drugs you may be taking, so it’s best to talk to your doctor before using them to make sure they’ll be safe for you.
Some people find that using an ice pack or a warm compress helps ease MS-related pain. While they will not treat the underlying problem causing pain, hot and cold can help soothe discomfort and relax numb or aching, cramped muscles. A hot bath may be helpful, but you’ll need to take care not to overdo it — heat sensitivity can cause worsened symptoms in many people with MS.
Chronic pain and other MS symptoms can make lying or sitting down for long periods preferable, if not necessary. However, it is beneficial to move around as regularly as you can. If you are seated, you may want to try adjusting your sitting position every so often or taking a break to get up and move. If you have difficulty with movement, a loved one may be able to help you practice gentle stretching exercises.
Adjusting your posture can have a big impact on pain — especially back and neck pain. If you are seated, try placing a small cushion or a rolled-up towel behind your lower back to help keep the spine in the proper position. Using a device called a standing frame to help support upright standing can also help improve posture and reduce strain on the muscles and ligaments.
If higher-energy days are few and far between, it can be tempting to push yourself to get everything done at once. However, this can lead to exhaustion and worsened pain. Instead, pace yourself by breaking large tasks into smaller, manageable chunks and taking time to rest when needed.
Pain is difficult enough on its own. When added to the rest of your MS symptoms, it can feel like an impossible hurdle. But the good news is that you don’t have to face these challenges alone.
On MyMSTeam, the social network and online support group for those living with multiple sclerosis, members talk about a range of personal experiences and struggles. Pain is one of the most discussed topics.
What has your experience with pain in MS been? Share your story in the comments below or by posting on MyMSTeam.