Occasional aches and pains are part of life, especially if you’re living with multiple sclerosis (MS). Many people with MS report having pain at some point during their disease course. Chronic pain –– pain that is always there or that comes and goes over a long period of time –– can seriously impact your quality of life, relationships, work, and even mental health.
Living with MS can create different types of pain, and they are all treated differently. It can help to know the signs of chronic pain syndrome, how it overlaps with MS, and what treatment options may be available to you.
Chronic pain syndrome can happen in any part of the body and can last for years. According to the National Health Interview Survey in 2016, about 1 in 5 Americans live with chronic pain. Women, people with disabilities, people with lower incomes, and those living in rural areas were more likely to report chronic pain.
Chronic pain is defined as long-term pain that lasts at least three months, but it can persist sometimes for years. Chronic pain may disappear and return, or it may be constant. Chronic pain symptoms can affect your ability to work, have a social life, and be present in relationships with others. When the pain intensity is severe, it can be difficult to care for yourself and can lead to depression. Skipping important self-care practices, like rest, exercise, and healthy meals, can make chronic pain worse, becoming a vicious cycle.
Sometimes it’s possible to trace the origin of chronic pain syndrome to another health condition, such as a neurological condition, fibromyalgia, cancer, or an injury. Other times, the cause is unknown. For some people, chronic pain syndrome can have several causes.
Chronic pain can be widespread pain or located in a specific place in the body or even in your nerves (known as neuropathic pain). Neuropathic pain is one of the most common subtypes of chronic pain, which can also include back pain, joint pain, neck pain, headaches, dental and facial pain, abdominal pain, and pelvic pain.
Chronic pain can feel different for each person. Chronic pain can include the following sensations:
Because chronic pain can be debilitating, it can lead to other health problems, known as comorbid conditions. These can include difficulty falling or staying asleep (insomnia), fatigue, depression, anxiety, and mood swings. One MyMSTeam member with chronic pain wrote, “I have chronic insomnia also.” “Depressed with the weight I’ve gained due to the inability to be active because of chronic pain and exhaustion,” another member shared.
Many people living with MS are also living with some form of chronic pain. Common types of chronic pain associated with MS are chronic low back pain, headaches, burning or prickling sensations in the arms and legs, and muscle spasms and cramps.
Neuropathic pain is caused by damage to the central nervous system (the brain and spinal cord), such as that caused by MS lesions. It can be acute (of short duration) or chronic. Neuropathic pain can include trigeminal neuralgia (sharp, stabbing facial pain), Lhermitte’s sign (an electric-shock sensation starting in the neck and going down the spine ), the MS hug (a squeezing feeling around the torso), and painful muscle spasms — mostly in the legs. People with neuropathic pain are often more sensitive to pain than other people; this is known as hyperalgesia.
Other health conditions can increase the likelihood of chronic pain. Risk factors for neuropathic pain include:
For people with MS, episodes of neuropathic pain can be brought on or worsened by fatigue, stress, and feeling overheated. If you are able to rest or cool off, the pain may subside.
Sometimes chronic pain is caused by an injury. Many people living with MS have impairments with mobility, which can be made worse by relapses. This can lead to an increased risk of falls and injuries.
People living with MS can also have chronic musculoskeletal pain because of weakness or stiffness that changes the way they walk. Walking off-balance because of foot drop or coordination problems can lead to discomfort, injury, and sometimes long-term pain.
People with MS are at higher risk of moderate to severe pain in general, as well as migraine headaches, as compared to people without MS. They are also at higher risk of using pain medication and having pain interfere with daily living. Being older and having MS for a longer period of time increases the risk of pain.
Smoking and heavy alcohol use have also been found to worsen chronic pain.
Treatment of chronic pain syndrome is complex, especially since it can often be caused by chronic overlapping pain conditions. The first step is to figure out what is causing your pain and if that underlying cause is treatable. Your health care provider can offer different forms of pain management for chronic pain, including medications, nerve blocks, therapy, and lifestyle changes. Often a combination of these is the best treatment plan.
Medications are an important part of chronic pain treatments. Depending on the type of chronic pain you’re experiencing, different types of pain-relieving medications, known as analgesics, are available. These include:
All of these medications have side effects, and some can be life-threatening, especially opioids. Always take your medication exactly as prescribed by your doctor, and don’t mix it with alcohol or drugs.
There are several other medical interventions that can help with chronic pain. These include:
Because chronic pain is often influenced by several factors, therapy can play an important role in helping you feel better. Especially if you’ve noticed chronic pain is contributing to feelings of depression and anxiety, ask your health care provider about different types of psychotherapy or mental health counseling.
If you have musculoskeletal pain related to your mobility, a physical therapist could help you stretch and move in ways that relieve pain. An occupational therapist can show you how to arrange your work and daily activities to minimize pain and fatigue. Your neurologist can refer you to these specialists.
There are many things you can do to help take control of your own pain. Lifestyle plays a major role in the severity of your chronic pain. There are a number things you can try, including:
If you have chronic pain that you’re unable to manage with your current treatments, speak to your doctor. They may be able to change your medication, connect you with a therapist, or refer you to a pain specialist who can develop an effective plan to treat your pain.
MyMSTeam is the social network for people with MS and their loved ones. On MyMSTeam, more than 198,000 members come together to ask questions, give advice, and share their stories with others who understand life with MS.
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