Gastroparesis Awareness Month… What It Is And How It Affects People With MECFS.
Gastroparesis
Gastroparesis is a disorder that causes low gastric motility. In other words, your stomach and intestines do not move food through your body.
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Signs and Symptoms of Gastroparesis:
-Vomiting
-Nausea
-Abdominal bloating and pain
-Feeling full after only a few bites
-Vomiting undigested food is eaten a few hours earlier
-Acid reflux
-Changes in blood sugar levels
-Lack of appetite
-Weight loss and malnutrition
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Connection to MECFS: Dysautonomia
Dysautonomia is a common symptom of MECFS. It refers to dysfunction of your autonomic nervous system. This is the part of the nervous system we do not consciously control. It causes dysfunction in heart rate, blood pressure, temperature, and of course digestion.
Gastroparesis often occurs in patients with severe ME. It may be worsened during PEM and can cause life-threatening malnutrition if not properly addressed.
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Diagnosis
The primary way gastroparesis is diagnosed is with a test known as a gastric emptying test or scintigraphy. A small meal containing a bit of radioactive material is eaten and scans are then taken to show the speed with which the food is passed through the digestive system.
Other testing for gastroparesis include:
Breath tests
Upper GI endoscopy
Ultrasound
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Treatment of Gastroparesis
Depending on the severity and complications of gastroparesis treatment can vary including:
Changes to diet in both content, size, and frequency of meals
Medications that speed up motility including metoclopramide, erythromycin, and domperidone
Medications to control nausea and vomiting including Benadryl, odensatron, and prochlorperazine
As well as more invasive treatments that directly address malnutrition and dehydration like feeding tubes, and central lines.
New devices are also being developed for gastroparesis that aims to stimulate gastric muscles with electricity.
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Difficulties in Treating Gastroparesis in MECFS
Because people with MECFS and gastroparesis are often severely ill, they may have many complicating factors making treatment difficult. For example:
Many pain meds particularly opioids can make gastroparesis worse but may be necessary for patient care
Digestion is slowed when lying down but many severe ME patients are bedbound
Dietary changes may be used to help with gastroparesis but many people with severe ME suffer from mast cell issues and dietary intolerances
Hospital admission is often necessary for gastric emptying scans and placement of feeding tubes of IV nutrition. But hospitals can be dangerous to people with severe ME.
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Gastroparesis in Severe ME and Misdiagnosis of Anorexia
Because severe ME patients are often young women, gastroparesis has an unfortunate history of being misdiagnosed in this population as anorexia. This can be especially true when patients suffer from both gastroparesis and MCAS leading to both low appetite and limited dietary options.
The paper "Life Threatening Malnutrition in MECFS" can be a useful resource for patient advocacy in this area.
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Dangerous Combination
This is also why it is important that ME patients be aware of gastroparesis and seek diagnosis and treatment early for the condition. Because the dehydration and malnutrition that gastroparesis can cause in combination with very severe ME is one of the most dangerous positions for an ME patient to be in.
ME patients already have low blood volume and suffer from an energy deficit. Malnutrition and dehydration compound these problems exponentially. It is difficult for severe patients to receive medical care and the increased severity of ME that gastroparesis causes make this challenge even harder. Yet severe gastroparesis requires lifesaving medical intervention.
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Importance of Gastroparesis Awareness in ME Communities
Despite gastroparesis being prevalent among ME patients in particular those with severe ME and severe dysautonomia, it is not often discussed in the context of MECFS care.
It is important that ME patients be aware of gastroparesis and be prepared to take appropriate steps to manage it should it manifest. As shown, the combination of gastroparesis and severe ME is extremely dangerous. Patients who are prone to severe dysautonomia are at the highest risk.
ME patients should understand that gastroparesis is a serious but treatable medical condition and understand the importance of timely intervention.
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August is Gastroparesis Awareness Month and it is technically still August!
Gastroparesis is comorbidity to MECFS or MyalgicEncephalomyelitis that I don't see discussed that often. Perhaps because it often affects severe ME and very Severe ME patients.
I must say that I personally did not know much about gastroparesis prior to this month and was prompted to make this post based on how little awareness I saw around the condition. Most of the information here comes from the Mayo Clinic's page on Gastroparesis with the ME-specific information largely informed by the paper "Life Threatening Malnutrition in MECFS" and I am sure that there is much I left out.
Gastroparesis is unique in ME complications because of how quickly it can become life-threatening. In fact, it is one of the ways severe ME kills that I have discussed previously. In contrast to many situations where hospital admission only leads to the worsening of health, gastroparesis is one situation where hospital admission may be necessary and life-saving for ME patients.
I believe it is essential that any patients with #dysautonomiaand/or ME be aware of gastroparesis. Especially those with EDS or other diseases that heavily overlap with the condition. As patients, we often have to self-advocate and knowing when to push for testing around gastroparesis can be a valuable piece of knowledge to encourage early intervention before reaching a state of crisis.
As someone who does not have firsthand experience with this condition, I hope that this post is still able to raise awareness and do the topic justice. If you know of further good resources on gastroparesis or have personal experience to share I welcome it and am always open to learning, growing, and adjusting my views based on new evidence!
