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Living with DM

Anesthesia advice for individuals and their families

Last modified: April 10, 2026

This page provides essential guidance for people with DM and families to safely navigate anesthesia and its risks. Download the resources below.

The anesthesia guidelines for healthcare professionals is found here.
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Individuals with myotonic dystrophy may need surgery or other medical procedures that use anesthesia, which reduces pain and anxiety during surgery. However, anesthesia pose special risks for people living with myotonic dystrophy because they are more sensitive to sedatives (medications that make you feel relaxed) and analgesics (painkillers). 

General anesthesia, which makes a person unconscious during a procedure or surgery, can be especially dangerous for people with DM because it can make muscle weakness worse and can affect a wide range of body systems.

 

Body System Potential Risk with Anesthesia
Heart
  • Rhythm (heartbeat) or electrical problems called “arrhythmias”. 
  • For more information on DM and the heart, refer to MDF’s Myotonic Dystrophy and the Heart: A Community Guide found on the Heart (Cardiac) Health and Risk resource page.
Lungs
  • Weak respiratory muscles can lead to weak cough or breathing, lung collapse “atelectasis”, low volume of air inhaled “poor inspiratory capacity”, infrequent breathing “alveolar hypoventilation”, and pneumonias (lung infections). All can cause low oxygen “hypoxia” & high carbon dioxide (CO2) “hypercapnia” in the blood, which is very dangerous.
  • Respiratory risks are higher during surgeries around the upper abdomen, chest, spine, and for older individuals.
Muscles
  • Inability to relax muscles “myotonia” triggered by cold, low potassium, cautery (tool to stop bleeding), & electrical stimulation. 
  • Increased sensitivity to muscle relaxant medications used during anesthesia. 
  • Succinylcholine (a commonly used depolarizing muscle relaxant) should be avoided in patients with DM. 
  • Non-depolarizing muscle relaxants (medicines that help relax muscles during surgery without causing big muscle twitches) may be necessary to allow the surgeon to have adequate conditions for your type of surgery. 
  • The degree of muscle relaxation is constantly monitored during surgery by the anesthesiologist. They will also administer a medication to reverse the effects of the muscle relaxant at the conclusion of the operation.
Nervous System
  • People living with DM are more sensitive to sedative medications and opiates (type of painkiller) can cause a range of complications throughout the body.
Airway
  • Aspiration pneumonia caused by weak airway muscles and an incompletely empty stomach, difficulty swallowing “dysphagia”, and sleep apnea (breathing stops and starts repeatedly.)
Digestive Gastrointestinal (GI) System
  • Issues with GI muscles can cause reduced contractions called “gastrointestinal dysmotility” that can result in total shutdown called “ileus”. This can lead to nausea, vomiting, constipation, reaching fullness easily, and a distended stomach.
Brain
  • Confusion called “encephalopathy” and difficulty waking up.
Endocrine
  • Problems with glucose and insulin metabolism that can lead to abnormal blood sugar.

 

Despite these concerns, with proper care and communication, individuals with DM can undergo surgery with limited risk. Give your anesthesiologist and medical team MDF’s Anesthesia Guidelines and/or Anesthesia Quick Reference Guide.

Reminder: Carry a Myotonic Dystrophy Medical Alert Card that indicates you have DM in case of emergency surgery.

To learn more about the potential risks of anesthesia, how to support safe anesthesia before during and after your procedure, what to expect during care, and how to communicate with your medical team, reference MDF’s Practical Advice for Anesthesia for Individuals with Myotonic Dystrophy and Their Families resource.

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Practical Advice for Anesthesia for Individuals with Myotonic Dystrophy & their Families

People living with DM may have severe and life-threatening reactions to anesthesia and should be monitored carefully whenever anesthesia is administered. This resource equips individuals living with DM and their families with crucial information to help navigate the anesthesia process.

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(Spanish) Recomendaciones prácticas sobre el uso de la anestesia para personas con distrofia miotónica y sus familias

Las personas con DM pueden presentar reacciones graves y potencialmente mortales a la anestesia, por lo que deben ser monitoreadas cuidadosamente siempre que se les administre. Este recurso proporciona a las personas con DM y a sus familias información crucial para guiar el proceso anestésico.

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