In the 42 years that I’ve lived with multiple sclerosis I’m glad that I’ve only been hugged twice. I’m talking about the MS hug, and it wasn’t fun. This MS symptom can feel like pressure or pain around the chest, back, or stomach, and it can be scary.
Some people described it on the MS News Today Facebook page like this:
“It’s like a charley horse in my ribs while I’m wearing a compression belt. The more I move the tighter it gets.”
“It feels like my lungs are being crushed against my ribs and not able to fully expand.”
“Mine tightens like the worst bear hug you can imagine, crushing all of the air out of my lungs and making it sound like I am coughing or choking. It goes on wrapping me up over and over for a good couple of minutes.”
“It feels like my body is in a compression sock. … It hurts to breath or move. It can hurt when your heart takes a beat and you can feel your blood moving everywhere like a buzz beneath your skin. It is an experience that is frightening.”
Some describe the MS hug as feeling like a heart attack that lands them in the emergency room. One of my hugs brought me to my knees and I had trouble breathing. I didn’t recognize it as an MS hug and my wife asked if she should call 911. But my hug eased after a couple minutes. Calling the medics in that situation probably is the best thing to do if you’re at all uncertain about what’s happening.
How long does the MS hug last?
The MS hug can last several minutes or several hours. For some, like me, the hug has struck only a couple of times over many years. Others report suffering from it every day, for as long as they’ve had MS. Some experience it as one of their first symptoms, sometimes even before diagnosis, but one woman wrote on Facebook that she has never felt it. “What is it?” she asked.
What causes it?
The MS hug can be caused by spasms, similar to how many people with MS have painful leg spasms. But, in this case, it’s the intercostal muscles, which help to expand and contract the chest during breathing, that spasm. The hug also can be a type of dysesthesia, in which pain, itching, or other abnormal sensations are felt in various parts of the body as a result of MS nerve damage.
What can you do about it?
There’s no medication specifically designed to treat the MS hug. But an article in Momentum magazine mentions the anticonvulsant medications Neurontin (gabapentin), Trileptal (oxcarbazepine), and Lyrica (pregabalin) to handle the nerve pain, and Lioresal (baclofen) to reduce spasticity. Several Facebook users have noted that steroid treatments have helped them. Always consult with your medical team, of course, before making any changes to your medication regimen.
Others have suggested self-help solutions including pressing on the painful location, wearing loose clothing, breathing deeply (although some prefer shallow breathing), and practicing mindfulness.
Like everything else with MS, there’s no one-size-fits-all solution.
(A version of this post first appeared as my column on the MS News Today website)
