PEM Survival Guide. How to Survive an MECFS "Crash"?
Post Exertional Malaise
PEM refers to unique metabolic and neurological dysfunction that occurs in Myalgic Encephalomyelitis (MECFS) patients after mental or physical exertion.
This guide will discuss the best ways to recognize and survive a bad episode of PEM also known as a crash.
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Signs and Symptoms
Indications you are in PEM include:
-Increased resting HR
-Sore throat
-Severe fatigue / exhaustion
-Dizziness when standing or sitting up
-Increased sensory sensitivity
Other symptoms include
-Paralysis
-Seizures
-Migraines / Headaches
-Fever / Temperature Imbalance
-Muscle Spasm
-Muscle Pain
-Joint Pain
-Cold and flu symptoms
-Depression or mood swings
-Hyper or Hyposomnia
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Preventing PEM
If you have MECFS pacing is crucial to stopping a crash. In general, you should
Take breaks regularly and aim to do 50% or less of what you believe yourself to be capable of in your sick body.
AND
Stop exertion as soon as you experience:
-New headache
-New pain
-Flushing or overheating
-Shaking
-Dizziness
-Elevated hr that does not return to resting when you take a break
-Other physical symptoms that have frequently preceded a crash
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Pre-crash
If you had to stop exertion because of one of the warning signs listed
Once you stop exerting
-Spend at least 15 min lying down in a dark room with no distractions*
Then when your hr returns to resting:
Assess whether you expect to crash and how bad based on past experiences. Plan for the worst.
-If you expect to be bedbound the next day get someone to come by and help or get items you need close to the bed
-Send a brief message to work or close friends letting them know you expect to go into a crash.
-Write down what it is you think caused the crash.
-Forgive yourself and don't dwell on your mistake.
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During crash
-Keep lights and noise to a minimum
-Do as little as possible
-Eat light meals and avoid any food that generally upset your stomach
-Use any and all mobility aids at your disposal
-Hydrate well using water and electrolytes
-Make sure to take any medications or supplements that help you
-Be gentle with yourself
-Ask for help
-Don't be afraid to take pain killers, especially to sleep
-Sleep as much as possible
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Unavoidable tasks
If you have unavoidable tasks during a crash
-Ask for help from a friend or partner
-See if it can be put off
If still unavoidable
-Adapt the task to be done in as horizontal a position as possible, if sitting, sit with your legs up
-Do the task in very short chunks. Take twice as many breaks as usual.
-Before and after the task rest aggressively.
-Use extreme caution if the task involves driving or machinery. I would highly advise against these tasks for safety reasons.
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Vital sign tracking
Many people find they benefit from tracking their vital signs in particular HR (Heart Rate) and HRV (Heart Rate Variability) during a crash. Here is what you can expect:
Warning: setting up tracking software is energy-intensive and should not be attempted if you are already crashing
Warning: be careful not to overstress about your vital signs or tracking as this can prolong a crash
Heart Rate
Resting heart rate: your resting heart rate will increase during a crash. This is a good sign to take it easy.
Heart Rate Variability
Your hrv goes through a pendulum pattern when you crash. The steps are as follow
1.) Post-exertion low: immediately following your exertion your hr increases and your hrv decreases.
2.) Parasympathetic swing:
Next, you will have an extremely high HRV indicating an active parasympathetic nervous system. I feel better during this time and get a lot of sleep.
3.) Big crash:
Swinging the other way you will then get a very low HRV as your sympathetic nervous system takes over. You might feel "wired but tired" at this point.
4.) Stabilization
Over the next few days, you will continue to swing between high and low until you stabilize around a baseline number. When your readings are mostly constant you are likely just about done crashing.
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Dealing with crash stages:
Regardless of whether you use tracking to tell where you are, you can often track a crash through a few stages and deal with it accordingly.
Post exertion paralysis:
Depending on the severity of your condition and exertion you may experience complete paralysis or just extreme weakness and fatigue. This is the part where you feel like you just ran a marathon and is most pronounced when you did something physical. Things that help include:
-Magnesium or Magnesium cream for muscle spasm
-Ibuprofen or Tylenol for pain
-Electrolytes
-Mobility aids/bedpans
-Premade food
-AAC or text to speech software if unable to talk
-Aggressive rest in a dark quiet room
Super sleepy:
This stage is designed to help you. Lean into the tiredness and sleep as much as possible. Besides medication and hydration, everything else can wait.
Wired but tired:
This stage is the most dangerous. Avoid stimulants either chemical or entertainment. Try to pass the time while doing as little as possible. Things that can help
-Sleep aids (inform yourself about risks and addiction)
-Weighted blanket, grounding meditation
-A bath (if easily accessible to you)
Warning: this is the stage where anxiety and depression are most common. Don't be afraid to reach out for help!
Recovery mode:
This is where you start gaining ground and recovering from the crash. Pace aggressively and be careful not to add back too much at once. Be aware that your baseline may have changed.
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Medications and supplements
Medications and supplements are not proven to help with crashes. I strongly recommend rest as the primary treatment for crashes regardless of any other medications used. But here are some classes of treatment you might hear of and discuss with your medical practitioner:
•Boost blood volume:
IV Saline - this is the most basic and proven option
IV Vitamins - these still serve the purpose of increasing blood volume and may have other benefits but some may cause complications
IV Supplements - once again boost blood volume but have the most unproven risks
•Boost Metabolism
These supplements are used by athletes to recover after a workout and have also been used by pwME. Functional doctors often use these.
•Dampen Sensory Overload
Benzodiazepines - are the most common of these treatments and can be very effective but risk addiction or "kindling" side effects
CBD - This can be used to reduce pain and increase sleep
Opioids - Also used to reduce pain and increase sleep but come with the risk of addiction and side effects
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PEM Survival Guide, cause you know we all need one.
This is the first in a set of frequently requested posts on ME basics that will be coming over the next week.
This post in particular summarizes a lot of takeaways I have gotten from the past 2 years of MECFS groups. I want to give particular credit to the group "MECFS: Below The Threshold" which has detailed resources on heart rate monitoring and many dedicated individuals who have uploaded and analyzed detailed crash data, as well as teaching me to collect my own.
Please note that this post is NOT a guide on how to avoid PEM and to please see my post on pacing for MECFS if you have not. The basic guidelines here on stopping exertion are only to help avoid going into a major crash and do not get into the detailed and difficult task of pacing every action throughout your day.
Everyone's tips for surviving a crash will be slightly different and I tried to focus on fairly universal experiences and practices as well as draw attention to drugs and treatments you may see frequently mentioned.
The reality is the only way to truly get out of PEM is to rest. It is so important to understand that any "secrets" people may share about "beating" PEM are simply ways to make the process more bearable. There is no magic bullet to escape the consequences of this disease.
Besides believing in a miracle cure and not taking PEM seriously Stop Rest Pace the biggest mistake I see people making is mental strain during PEM. While physical exertion is easier to track, mental exertion and stress can also make it extremely difficult to come out of PEM.
This is made worse by people beating themselves up over whatever caused the crash or researching a million remedies while they are crashing. (Both natural temptations I have been guilty of!)
This is why I specifically say to only take meds and supplements you already know to help you. To avoid researching during the crash period.
TLDR: buckle in, rest, and ride it out. Not what everyone wants to hear, but sometimes the only way out is through.
