Flexibility and multiple strategies are key, especially considering that pain can evolve over time because of changes in MS and related conditions.
“Pain syndromes are incredibly common. They can happen in monophasic, neurological attacks, or relapsing conditions,” neurologist Scott Newsome, DO, of Johns Hopkins University, Baltimore, said in a presentation about pain at the 2021 Annual Meeting of the Consortium of Multiple Sclerosis Centers (CMSC). “The good news is there are a lot of things that we can do to help our patients, and the buck does not just stop with oral medications.”
Dr. Newsome, president of the CMSC’s foundation, noted that pain syndromes affect most people who have spinal cord attacks. Research has suggested that the severity of initial attacks is a predictor of the severity of pain syndromes to come.
“There’s a number of triggers that can worsen these pain syndromes – not sleeping well the night before, anxiety, or when someone overheats,” he said. “A lot of our patients during the summertime, when they go out, they want to enjoy themselves and hang out with their family. If the ambient temperature is to a degree where they have increased symptoms, it really impacts their quality of life.”
Dr. Newsome urged colleagues to consider the three types of pain – primary, such as those related to spasticity or tonic spasms; secondary, which can be caused by weakness, reaction to weakness, and spasticity; and tertiary, which is the emotional response to pain.
Tertiary and secondary pain are often overlooked. On the latter front, “early on in my career, I was a big offender,” he said. “I would just focus how a person had a direct injury to the nervous system and not realize that their hip isn’t hurting because of it. It’s a compensatory mechanism after the direct injury, affecting the muscle skeletal system adversely, and having this wear-and-tear phenomenon – setting them up for advanced arthritis, or even a vascular necrosis.”
In regard to MS, he said, it’s helpful to understand pain syndromes. One type is neuropathic: pain that’s worse at night, doesn’t respond well to standard painkillers, and needs multiple therapies. Another type is paroxysmal cord phenomena, which include tonic spasms, Lhermitte’s sign (“an uncomfortable, shocking, vibrating, electrical pain that goes right down their spine” when the neck is flexed), and a condition known as MS hug. “Our patients will come in and say: ‘Oh, it feels like someone’s given me a bear hug or is strangling me.’”
What works as therapy for primary pain syndromes? “I personally don’t like opioids for any pain syndrome, for a lot of reasons,” he said, but a combination of other drugs can be helpful at low doses to start. “I’m a big believer in combining treatments that have different mechanism of actions” instead of, say, combining gabapentin with pregabalin, nerve drugs which work in similar ways.
Dr. Newsome recalled seeing a patient recently who said: “Oh, I tried that drug, I tried this drug, they didn’t help, and I couldn’t tolerate them.” Turns out the patient was taking maximum doses. “No wonder you didn’t tolerate it,” Dr. Newsome said.
Nonpharmaceutical interventions can play an important role, he said. “Believe it or not, we’ve had a lot of people get benefit from acupuncture and massage therapy. And we’ve had some people actually undergo spinal cord stimulation and get stimulators placed. It’s rare, but that’s a consideration for individuals who are refractory to everything you do.”
Medical marijuana, Botox, ketamine, and intrathecal baclofen are other options, he said.
Finally, he said, slowly taper a patient off pain medications if they’re pain free for 3 months. “If someone is doing nonpharmacological interventions, and they’re having a good deal of pain relief, then that’s definitely an opportunity to cut back on the pain medications.”