Nearly everyone with multiple sclerosis has experience with pain. It’s regularly reported as one of the most common symptoms MS patients live with — ranging from unpleasant aches and sensations, to excruciating and even debilitating bodily misery.
Even though we know pain is a common and even primary symptom for some, and with decades of experience treating it, pain is still often a mystery to both healthcare providers and those living with it every day.
“There’s a lot of misunderstanding about what pain in multiple sclerosis is,” says Anastacia Wall, Physician Assistant with the Rocky Mountain MS Center at University of Colorado.
We expect pain to be a simple cause and effect: you stub your toe on the leg of a chair, and therefore your toe hurts. You strain your back picking up a heavy object, therefore you’ve got back pain. Splash boiling water on yourself while preparing dinner, and the source of that pain is clear and obvious.
Unfortunately, pain that’s a symptom of MS is much more complicated than that.
Understanding Pain in MS
Most people live in a world where pain is generally easy to explain. And those living with MS are from that world, too. This idea of pain coming from nowhere, or not being the result of something easily understandable and explainable — that’s just as foreign to a newly-diagnosed MS patient as it is to anyone else.
But it’s important to understand that MS pain can come from seemingly nowhere, with no simple explanation as we understand it. Often there’s no underlying injury, accident, muscle strain, or anything else we’d expect to cause pain.
“Sometimes it’s a burning pain, sometimes it’s an electrical pain. I had one patient who complained that his hand was swollen, and he wanted a water pill to bring the swelling down.” said Wall.
But looking at the patient’s hands, everything was normal. “I said, ‘Have you noticed that your wedding ring comes on and off? Don’t you think that’s odd, for a swollen hand?’”
“This was confusing for him — he knew, if his hand was swollen, his wedding ring shouldn’t be able to come on and off. But in his brain, his hand was twice the size it should be,” said Wall.
“That was early in my career, and to me, that was just so illustrative of how the brain can perceive sensation.”
“The most extreme thing that I hear from patients is, ‘Can’t you just cut off my feet?’” said Wall. “As a human being, that’s so jarring… and as a provider, that makes you feel so helpless. But the thing I have to, sadly, say to them, is the pain isn’t in your feet.”
So, without an obvious injury or cause for inflammation, where is this pain coming from? How and why do we feel any of the myriad sensations we call “pain” when there shouldn’t be any pain present?
Two Types of Pain
The way the human body perceives pain can be broken down into two main categories, nociceptive pain and neuropathic pain.
Nociceptive pain, or acute pain, is what most of us learned about way back in our most basic biology classes.
Each of our bodies has a vast network of nerves, and those nerves deliver sensations to our brain. Nerve endings in the hand you splashed hot water on send a message to your brain to let you know what hurts, where it hurts, and how bad the pain is.
You can look at it as a sort of an alarm system — pain in your hand alerts us to a problem. First and foremost, get your hand away from that hot water. Next, the severity of the pain lets you know what you need to do. If it’s not so bad, maybe you can just carry on cooking. If it’s moderate, a few minutes of cold water in the sink could suffice. If it’s severe, it might be time to look at first aid or even seek help.
For most people, this is the natural process of feeling and reacting to pain. It’s mostly straightforward, mostly easy to understand, and often fairly easy to treat.
“Most people are living in a world where nociceptive pain is the only pain they experience,” says Wall.
Neuropathic pain, sometimes labeled chronic pain, is what’s often happening with MS patients.
The vast network of nerves responsible for delivering sensations flow from all over our bodies (the peripheral nervous system) into our spinal column and eventually up to our brain (the central nervous system). Neuropathic pain manifests when there’s damage or inflammation along this network.
If acute pain is an alarm system, we can look at this like a malfunction of that alarm. We perceive the pain, and we’re naturally inclined to react — but there’s nothing for us to react to, except the pain itself.
Of course there can be many causes of chronic, neuropathic pain. An injury from long ago may have left you with damaged nerves, or another condition like diabetes may be causing damage somewhere in your peripheral nervous system.
But MS, as we know, is an inflammatory disease of the central nervous system. When MS attacks nerves in the brain or spinal cord, neuropathic pain is often the result.
Neuropathic pain can range in severity and sensation. It can be felt as a crawling or burning sensation, pins and needles, and throbbing or stabbing sensations in the arms and legs.
It’s responsible for the infamous “MS Hug” — a feeling of tightness around the chest, often experienced by MS patients. It can also manifest as trigeminal neuralgia, a painful sensation of burning or stabbing usually on one side of the face.
Depending on where MS has affected your nerves, neuropathic pain related to MS can vary as widely from person to person as any other common MS symptom.
Treating Different Types of Pain
Why is it so important to understand the differences between the types of pain?
Simply put, it’s because how you treat one might have no effect on the other, or even cause additional problems.
“When you have nociceptive pain, you need pain blockers, pain meds, anti-inflammation,” says Wall. This can include over the counter medications like ibuprofen and acetaminophen, or or prescription painkillers. Opioids may also be prescribed in some specific cases, but should always be used with great care. Cannabis has shown some anecdotal promise in the treatment of pain, but it still hasn’t been studied very thoroughly, leaving its status as a viable pain treatment option murky at best.
The best medication option is different for each individual, and you should discuss specifics with your medical team. But with all pain medications, the aim is to decrease inflammation, which in turn decreases pain.
Generally speaking, these approaches don’t work with neuropathic pain.
“When you have neuropathic pain, you can decrease inflammation all you want, it’s not going to do it,” says Wall. “You can’t decrease inflammation in the central nervous system with enough ibuprofen, it’s just not going to happen.”
Without an underlying cause like an injury that can be directly treated or repaired, treating chronic, neuropathic pain is complicated and difficult. But understanding that this boils down to a malfunction in the nervous system, providers can look elsewhere for treatment — outside the normal regimen of painkillers.
“We have to use seizure medications, or medications that work on neurotransmitters, to try to modify that pain,” says Wall. “It’s not easy to do, and sometimes we can’t. It’s a very challenging problem to try to effect.”
Seizure medications can interrupt abnormal electrical transmissions and block some electrical impulses that are perceived as pain.
“We also use antidepressants, which people are often surprised by,” says Wall. “But the reason is that it’s all neurotransmitters, it’s all chemistry, and we can only adjust some things more than others. Sometimes when we increase dopamine or increase seratonin, it can decrease the amount of pain someone will experience.”
Treating neuropathic pain isn’t without side effects, says Wall, and providers must take care to weigh the benefits of treatments. “Everything we do to try to decrease your pain is going to decrease your cognition.”
“Sometimes people say ‘I want out of this pain,’ but they don’t realize there’s always a trade-off. If I’m decreasing your electrical impulses in your brain, I can’t be specific. We can’t just take out your pain receptors, for example,and have no impact on your energy.”
The goal, then, is to decrease the perception of neuropathic pain, while limiting the potentially negative side effects on the rest of the nervous system.
“If you’re living at an eight (on the pain scale), a four sounds like heaven to you,” said Wall. “My goal is always to get patients to a zero, but in some cases that four might be acceptable.”
Medication is only one means of dealing with pain. While it may become necessary, other interventions can play a role in your overall strategy to fight pain.
While any strategy is based on your personal situation and the severity of your conditions, the first of these strategies is simple distraction.
“Most people will say they have a lot of their neuropathic pain in the evening,” says Wall. “From my standpoint, the reasons are twofold. One is your brain is developing toxins during the day, which flush out when you sleep. Second, when you’re out during the day, running around, doing things, you’ve got light, you’ve got sound — you’re distracted. When you get home, you’re laying in bed, it’s basically sensory deprivation, and then all you have is your pain.”
“So why not use that to your advantage? If you can distract yourself, or try to use mindfulness strategies to get away from it, I think that’s one of the things that we can do.”
Another important strategy for dealing with pain is simple stretching, exercise and physical activity.
In addition to increasing overall brain health, exercise increases endorphins and serotonin that can dampen some of the effects of neuropathic pain.
“We’re always pushing for overall brain health,” says Wall, and regular physical activity is a core component of that.
Getting to the Bottom of Your Pain
Understanding how different types of pain are treated, it becomes particularly important to properly identify the type of pain you’re in — and that’s not always as easy as it sounds.
It’s also important to remember that not all pain you may experience is related to your MS at all. “Not everything that happens to you is your MS,” says Wall. “Sometimes you still have to go through the things that people without MS go through.”
According to the American Chiropractic Association, up to 80% of the population of the United States will experience back pain at some point in their lives. Pain in your back, then, could just be simple back pain, and completely unrelated to MS.
Then again, other symptoms of your MS could be exacerbating things and causing unrelated ailments to get worse.
Spasticity, for example, is a tightening or tensing of muscles frequently reported by MS patients. If you experience a severe bout of spasticity, that can easily lead to muscle soreness, joint pain, or other aches and pains that are due to, but not directly related to, your MS.
There are also some simple ways to determine if you’re experiencing acute, nociceptive pain, or chronic neuropathic pain that could indicate it’s a direct symptom of MS.
“If your foot hurts, and you push on it, and it hurts more, it’s not likely to be neuropathic pain,” says Wall. “That tells you that the source of the pain is in your foot, rather than in the central nervous system.”
The process of figuring out your pain can often start with a visit to your primary care physician. Regular exams may show that what you’re dealing with is not directly related to your MS at all.
If that turns out to be the case, there’s likely a treatment available to you that will have a much greater impact on the underlying cause of your pain than resorting to neuropathic treatments.
However, if you and your primary physician have investigated all the possibilities and still haven’t found the answers you’re looking for, it may be time to take it up with your MS care team.
“I spend a lot of time thinking outside the MS box,” says Wall. “I’m always looking for the thing that’s modifiable.”
“Start with your regular doctor, and if it’s nothing else, if nothing else makes sense, then come to me, then we can see if treating you with neuropathic pain medications is the right way forward.”
Help Your MS Team Help You
Pain is notoriously difficult to diagnose, especially when the causes aren’t clear. You can do yourself and your MS care team a great service by trying to help them understand your pain, where it’s coming from, and and how it’s affecting you.
“What I want patients to do is to come prepared,” says Wall. “When did it start? What makes it worse? What makes it better? Have you tried over-the-counter pain medications?”
Understanding your personal medical history and the history of the pain you’re currently experiencing will go a long way toward helping your provider find a way forward that best suits your situation. Be prepared with specifics — even keeping notes or a journal of your pain.
“You may live with pain, but that’s not going to end your life,” says Wall. “There are lots of people who live with pain, and we can still live a victorious and triumphant life, despite the pain.”