Many symptoms of multiple sclerosis (MS) are challenging to endure. For example, having difficulty swallowing is a common issue with MS. It can prevent any pleasure or comfort when eating a meal. Many people with MS report being discouraged from eating at all due to the severe pain and terror it can cause.
We reached out to the MS community to learn more. We asked, “Do you ever feel like your food gets stuck in your throat or experience other difficulties when it comes to swallowing food or drinks?”
We received 280 responses to our prompt! The MS community was moved to share their symptoms.
Difficulty eating
Living with MS forces you to change your eating habits to prevent choking. It may become exhausting to eat when you are focusing on avoiding pain. An ordinary meal can become a punishing experience.
“Sometimes it feels like I’m trying to swallow razor blades. Sometimes it gets stuck just past my tonsils and won’t go down or come back up. It’s awful.”
“Yes! It scares me all the time. Sometimes I try to avoid eating and drinking as long as possible. . . . I don’t like avoiding foods I love because of it, and I hate eating around people because of it too.”
“Yes, and it is a horrible feeling. Usually I have to go throw up before I can continue eating. If I try to drink something to get it dislodged, the drink does a backwash and up it comes. A lot of times I have to just quit eating.”
“Very often. I choke on anything and everything and my own saliva as well. It’s an everyday thing. Food sometimes gets stuck in my esophagus and I can’t get any air . . . also bite my tongue or lip or inside my cheek. It happens every day.”
“Yes. And it chokes me so bad sometimes, I instantly throw up. It’s embarrassing, scary, and I never know what foods or drink is going to trigger it.”
Choking during sleep
Living with MS can make it impossible to get a good night’s rest. After a tiring day of dealing with MS, sleep may be all you want. But the condition can even affect you during the night. It is scary not knowing what issue you may have in your sleep.
“All. The. Time. I choke on my saliva constantly and even in my sleep, I will wake up choking.”
“Yes, it was one of the symptoms that got me diagnosed. . . . I would choke horribly in my sleep on my spit. I would forget how to swallow. So scary!”
“I tend to choke in my sleep.”
Trouble making others understand
It can be upsetting to realize that people know little about your condition. You may find it hard to explain what you deal with to loved ones. Even doctors may be unfamiliar with your symptoms and why you struggle to swallow. It is common to feel alone when others do not understand.
“Yep. It’s pretty embarrassing to show up at the ER, halfway blocked but still breathing, with your kids telling the nurse I choked – ‘On what?’ ‘He was eating a Big Mac.’ The stereotyping mutes the MS pretty quickly.”
“Yes, I have lichen planus in my esophagus, likely caused by Rituxan infusions. It’s so rare, doctors just don’t know.”
“Yes!!! Has been happening for years! No doctor seems to acknowledge it.”
“Yes, hard to explain to my family. . . . Allergies can make it worse.”
What helps
Many people living with MS have found ways to cope with the symptoms. They have learned from helpful resources how to make swallowing easier, tolerate the pain, and prevent choking.
“I have trouble with liquids. I saw a speech therapist, strange as it sounds. She taught me that, other than exercises to strengthen the muscles, I can tilt my chin down to my chest a little when I swallow liquids to avoid choking. Apparently, this closes the airway and leaves the food pipe open. All I know is that it works.”
“My neurologist told me to drop my chin to my chest when experiencing difficulty, which can help the muscles do their job a little better.”
“I had a speech therapist that helped me with this a few years ago. . . . Tuck your chin in and swallow twice.”
“Yes, I raise my hands up over my head for the food to go down.”
