Introduction
Muscle spasms have been found to occur in people with ME; they include oesophageal spasms. Muscle spasms are unintentional, involuntary, and painful muscle contractions. The pain from spasms can be very sharp and intense.
Oesophageal Spasms
Oesophageal Spasms can be felt as extreme pain in the centre
of the chest that sometimes radiates to the chest or mid-back & difficulty
swallowing or an inability to swallow
The above listed features have been reported in ME, in
particular in Severe ME. We are aware of the features directly from feedback
from the severe ME community and through the horrendous stories of battles with
healthcare providers to get tube feeding set up for severe ME patients
suffering from malnutrition.
What do oesophageal spasms feel like?
Oesophageal spasms can cause mild to severe symptoms. Some
people experience no symptoms.
In some cases you may have:
- Chest pain that may
feel like heartburn (burning sensation in the chest) or, less commonly, a heart
attack.
- Trouble swallowing
foods or liquids (dysphagia).
- Pain near the
breastbone when you swallow or at other times.
- Sensation that
something is stuck in your throat.
- Food or liquid
comes back up after you swallow it (regurgitation).
What causes oesophageal spasms?
The precise cause of oesophageal spasms is unknown. Some in
the medical community believe the problem results from faulty nerves that are
responsible for how the oesophagus muscles work.
Too much acid in the oesophagus could also lead to the
problem. Excess acid can be due to having heartburn for a long time.
Some people notice oesophageal spasm symptoms after eating
hot or very cold food or drink. But spasms can happen anytime, even when you’re
not eating or drinking. The symptoms of oesophageal spasms usually come and go.
Or symptoms may come on suddenly, out of nowhere. Symptoms may last for a few
minutes or more than one hour.
How Does the Oesophagus Usually Work?
Usually, after you swallow, oesophagus muscles contract
(flex and relax). When the oesophagus works as it should, this wave of
coordinated contractions moves food or liquid down to your stomach.
If you have oesophageal spasms, these contractions don’t
work correctly. Unusually powerful or ineffective muscle contractions in the
oesophagus can make it difficult for food or liquid to move through your
oesophagus.
Left untreated, moderate to severe cases of oesophageal
spasms can negatively affect your quality of life. Symptoms may make eating
difficult, which can lead to nutrition imbalances over time, weight loss and other issues.
Patient Feedback
We recently received the following feedback from a person
with severe ME who would appreciate any documents/research/one pager for the
purposes of educating healthcare professionals specifically about oesophageal
spasms in ME and re nutrition and a possible treatment.
We have some information re oesophageal spasms in general
and about malnutrition in ME but not specifically anything about oesophageal
spasms.
(⚠
a difficult read ⚠)
"I had a rather scary experience on Tuesday night. I
choked on sticky dessert, ended up coughing so much to the point of vomiting,
followed by a possibly allergy attack and my body going into shock.
Rushed to hospital, sirens and all. Got injection while in
the ambulance for developing a rash.
Was monitored in A&E until my BP went down.
Doctor called it a spasm of oesophagus (don’t remember
medical term of spams)
But reconfirming to be much more vigilant about food
consistency. No more [food] trials. Soups only. And things I know are ok. But
these are ever diminishing. Sadly.
Had meeting that morning with the speech and language
therapist and we kind of came to [the] same conclusions.
Chef in response made me a puréed dessert which even eating
three spoonfuls created this response.
These spams are a medical thing which could happen again.
Got back here during the night 13:30am.
Am ok. But still in a lot of pain, my throat and my body.
And dizzy.
It was all too much for my body. And mind.
Resting lots. More than I was already doing.
Ps
Still in a lot of pain and wake up exhausted.
Will take a while to recover it seems.
My body was shaking uncontrollably at some point, and teeth
clattered at enormous speed. Unable to speak clearly, confusion and I think
that is where the remaining body pain is from."
~ Severe/Very Severe ME patient
Guidelines/Lack of Guidelines
There are general guidelines on Oesophageal Spasms available eg via link below but nothing specific for ME/Severe ME. We are reluctant to share when they are not specific to ME and we don’t know enough about Oesophageal Spasms in severe ME.
Please use any recommendations with caution.
Treatment recommendations e.g., certain drugs may not be suitable for most people with ME/Severe ME but may be useful for some less severe patients.
Guidelines from Cleveland Clinic here
Further Reading
Oesophageal Spasms and Swallowing Difficulty (Dysphagia) in ME are mentioned in the ebook ‘Chronic Fatigue Syndrome: A Treatment Guide’, 2nd Edition by Erica Verrillo published in 2012. from page 5510. Please see extract below.
‘Esophagus
The esophagus is an 8- to 9-inch long tube that extends from the base of the throat, just below the Adam's apple, to the stomach. Its function is to transport food from the throat to the stomach by means of peristaltic action.
The upper third of the esophagus consists of striated muscle, and the lower two- thirds consist of smooth muscle. The two valves at the upper and lower ends of the esophagus
- the upper and lower esophageal sphincters, respectively - allow food to pass first into the esophagus, then into the stomach.
The lower valve also prevents reflux of corrosive stomach acid into the esophagus and throat.
Problems with the esophagus can arise from faulty operation of the lower valve (lower esophageal sphincter) or from the muscles responsible for peristalsis.
One of the more painful experiences in ME is the esophageal spasm. Because the spasm usually occurs in the center of the chest, the pain is frequently mistaken for a heart attack. An esophageal spasm can feel like a tight, squeezing pain that sometimes radiates to the stomach or mid-back. Unlike cardiac pain, however, the pain does not radiate down the arms or increase after exertion.
Esophageal spasms in the striated muscle portion of the esophagus produce a cramp so excruciating that it can send you straight to the emergency room.
Spasms in the lower portion of the esophagus are painless but the blips, pops and twitches are nonetheless disturbing.
Spasms in this area are generally thought to be caused by an exaggerated motor response to peristalsis; that is, the esophagus contracts too much.
Repeated spasms of this nature are referred to as diffuse esophageal spasms and are not uncommon in people with ME.
TREATMENTS
Treatment of esophageal spasms is somewhat limited because the problem is usually not chronic. Muscle relaxants may help diminish the force of the spasm in those who experience spasms in the upper esopha-gus.
Swallowing something that coats the esophagus (like kefir) can ease the cramp.
Avoiding foods that irritate the stomach also helps. Spasms in the lower part of the esophagus are sometimes caused by re-flux.
Carbonated drinks, acid foods, foods that are too hot or too cold, or indeed any food to which there is sensitivity may cause esophageal spasms. Even sudden changes in temperature, (for example, a hot shower) can trigger esophageal spasms in the sensitive individual.
Emotional upset and stress can exacerbate this problem. Avoidance of esophageal stressors, treatment of reflux, and general stress management can help reduce the frequency and severity of esophageal spasms.’
Note
We are not medical professionals; please use any recommendations with caution.
We will update re any suggested treatment/management for Oesophageal Spasms in ME when we know more.
You are welcome to add any personal feedback if you are happy to have it on a public page; if you'd prefer to email us any personal feedback you can email us.
Our email address is info@meadvocatesireland.com
Thank you to the ME patient who contacted us for your important feedback.
And thanks to the ME community for any feedback and support.
Disclaimer: The information in this post is for general information purposes only. While we endeavour to keep the information up to date and correct, we make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability or availability with respect to the post or the information, products, services, etc contained in the post for any purpose. Any reliance you place on such information is therefore strictly at your own risk.The suitability of any solution is totally dependent on the individual. It is strongly recommended to seek professional advice and assistance.