What People with MS Wish You Knew About MS Pain

A woman doubles over and squints in pain, holding her stomach and her back. The background shows the enlarged, abstracted outline of lightning bolts.

Pain can be one of the most challenging things in life to deal with. However, for people with MS, pain is often part of daily life.

While September was Pain Awareness Month, it is important to continue the conversation about the connection between pain and MS. To learn more about the impact of this connection, we asked community members to share their experiences and answers to a question we posed: “What do people need to know about MS pain?”

More than 120 people with MS answered the question. Here is what was said.

For some, MS pain is constant

The #1 answer shared was that the pain of MS is constant. For many people with MS, there is never a day, never a moment, when they have a break from the pain. Most people who do not have MS have a hard time imagining what it is like to have such ongoing, persistent pain.

“I am never without some type of pain from MS.”

“I am constantly in pain.”

“That it is never something you just ‘learn to live with,’ and living your life in almost constant pain does not make you brave or an admirable person – just an unlucky one.”

“It has been 20 years nonstop. Burning head to toe, and even internally into lungs. Overwhelming.”

“That it is always there. Never goes away!”

The pain is tough to block out

Sometimes it is said that people learn to live with their pain, that it becomes something that they are able to ignore or block out. However, nearly everyone who answered this question said that is not the case with MS. They never forget the pain, and it is something they can feel all time.

“People with MS are very aware of their pain.”

“I am very aware of my pain.”

Chronic pain is stressful

There is the physical aspect of pain, and then there is the emotional side of pain. Many people may not consider that living with pain can make someone feel frustrated, sad, or depressed. It can also be stressful. There is an anxiety in knowing that you will likely feel pain tomorrow and the day after that – which can take a huge emotional toll on a person.

“Yes, the pain can be very stressful most of the time.”

Pain is invisible

One of the hardest parts of MS is that the pain is often invisible, so other people have a hard time recognizing and understanding what someone with MS is going through. Even if the person with the diagnosis shares what is going on for them, not everyone will understand. Because of this, this type of pain can feel isolating.

“No one can see your pain.”

“That it is not easy to understand pain that is not visible.”

Dominating daily life

Given what community members have shared about how constant the pain is, it makes sense that a few people shared that the pain of MS dominates daily life. This is a big part of what makes MS so hard to live with – that it hurts someone in such a way that it can be a challenge to live a normal life.

“Pain can take over your life.”

Thank you to everyone who shared their experiences and answered this question. We appreciate hearing from so many community members.

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