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The pain multiple sclerosis patients feel is also causing major disruptions in their life.

That was the thrust of a presentation made at the 2018 Annual Meeting of the Consortium of Multiple Sclerosis Centers (CMSC), held recently in Nashville, Tennessee.

The research showed a high prevalence of pain in more than 50 percent of people with multiple sclerosis (MS). Nearly 30 percent of those patients reported pain was their worst symptom.

Pain has been associated with poorer psychological functioning as well as reduced productivity. It also interferes with daily functions.

“Mood, cognition, fatigue, sleep, quality of life, and overall ability to function are all affected by pain,” Dr. Barbara Giesser, professor of clinical neurology at the David Geffen School of Medicine at the University of California Los Angeles (UCLA) and clinical director of the UCLA MS program, told Healthline.

The investigators looked at 161 patients with multiple sclerosis from the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry who reported at least mild pain.

Multiple sclerosis is an intrusive illness with a menagerie of symptoms. This intrusiveness and its associated pain in daily lives was analyzed using the Illness Intrusiveness Rating Scale (IIRS).

“Pain is a very common and sometimes under-recognized symptom of MS,” Giesser said. “Pain may come from damaged nerves (neuropathic), poor gait mechanics, or other structural abnormality such as arthritis or spasticity, and can aggravate other symptoms such as fatigue. There are many effective pharmacologic and non-pharmacologic treatment for pain, specific to each type.”

The dynamics of pain

Healthline caught up with Kathy Costello, a nurse practitioner at the Johns Hopkins Multiple Sclerosis Center and the associate vice president of healthcare access for National Multiple Sclerosis Society.

Costello provides ongoing management of disease symptoms with her patients at the clinic.

“There is a high prevalence of pain in MS — greater than 50 percent,” said Costello, “and it comes in a variety of types.”

There are two main types of pain, muscular skeletal and neuropathic.

“Muscular skeletal pain comes from spasticity and joint discomfort,” said Costello.

She added that “gait issues from weakness can develop secondary pain associated with it.”

“Neuropathic pain comes from the damage occurring in the central nervous system,” Costello noted. “The pathways are affected by MS and can send a message of pain even when there is none. People can experience burning, searing, or a tingling sensation. The pain is intermittent or it is relentless and the patient lives with it 24/7.”

There is also acute pain syndrome when the pain is intermittent but comes on with extreme intensity.

Costello described how pain can increase at night when other sensations are reduced.

“This can be so challenging to someone’s life,” she said. “Pain is a major disruptor in everyday life. Normal relationships. Intimacy. When someone is experiencing a high level of pain, it’s difficult to engage in these activities.”

Costello has heard patients describe pain as, “Nails going through the bottom of your feet when you walk.” Or, “Hot liquid running down one’s leg.”

Simple activities such as talking, eating, or even a slight breeze on the face can cause a disruption in nerves and prompt severe pain for a person living with MS.

“Altered sensations may make a smooth surface feel like nails or sandpaper,” Costello said. “When pathways are disrupted we misinterpret the feeling that should happen. There is more pain then usual, so we need to settle down that extra sensation.”

A variety of treatment options

Nonsteroidal anti-inflammatory drugs (NSAIDs), such as Advil, are not effective for neuropathic pain, said Costello.

“Drugs targeted to settle down overactive nerve impulses like anti-seizure drugs could be effective. They help to settle down the pathways and reduce the intensity of pain so it becomes more manageable,” she said.

With pain medications, however, come side effects.

Anna Ray, a multiple sclerosis patient, shared her story with Healthline.

“My experience after my MS diagnosis in 2012 with pain has been terrible. The side effects of all meds for nerve pain have been too much to handle,” she said. “They made me confused and completely drugged out. After the withdrawal with Lyrica and missing work for a week I decided to just bear the pain. That has been easier than side effects.”

Ray added, “I've tried eating healthier and choosing foods that are anti-inflammatory. Doing what little exercise I can and also medicinal marijuana, which has no side effects and makes the pain very bearable.”

Meditation and other various types of intervention can be helpful.

“Mindful meditation and cognitive behavioral therapy can help people manage pain,” said Ray. “It is important to look at a broader sense with regards to management. Look at multiple strategies to better reduce the pain so person can function at the level they wish.”

Cathy Chester, another multiple sclerosis patient, has had a similar experience.

“I've had gut issues and pain since January 2017,” she told Healthline. “Diet, exercise and meds aren't helping. These issues kicked in my MS so I was forced to go on three days of steroids, which caused more belly pain.”

Chester is headed to Johns Hopkins at the end of June.

Costello recommends, “When experiencing pain, patients need to let their healthcare providers know about it. Magic will not make it go away. Talking about it, understanding it, and coming up with a plan will be best.”

“It is not easy, there is no magic formula. Don’t be silent about it,” emphasized Costello. “Often a solution can be identified.”

Editor’s Note: Caroline Craven is a patient expert living with MS. Her award-winning blog is GirlwithMS.com, and she can be found on Twitter.