Wednesday, July 6, 2011

Relapsing and Adrenaline Surges

*permission to repost*

A new HFME paper is available: Assisting the M.E. patient in managing
relapses and adrenaline surges

M.E. patients have strict limits on how active they can be. If these
limits are breached, symptoms worsen immediately and there is also a
further deterioration 24 - 48 hours later, as well as the potential for
repeated or severe overexertion to prevent any type of recovery, or
cause disease progression or even death.

This paper explains how carers, doctors, and also friends and family
members and partners of M.E. patients, can help patients to avoid
overexertion and so have their best possible long-term health outcome.
It also describes the characteristics and signs of adrenaline surges and
relapses in M.E. for the benefit of these individuals, as well as for
newly ill M.E. patients themselves.

This paper is designed to be read together with the more detailed
Hospital or carer notes for M.E.  paper.


Assisting the M.E. patient in managing relapses and adrenaline surges by
Jodi Bassett, November 2010

M.E. patients have strict limits on how active they can be. If these
limits are breached, symptoms worsen immediately and there is also a
further deterioration 24 - 48 hours later, as well as the very real
potential for repeated or severe overexertion to prevent significant
recovery, cause disease progression or even death.

It is very important that M.E. patients stay within their limits.
Unfortunately, M.E. patients may find staying within these limits all of
the time very difficult for a number of reasons.

This paper explains how carers, doctors, and also friends, family
members and partners of M.E. patients, can help patients to avoid
overexertion and so have their best possible long-term health outcome.
It also describes the characteristics and signs of adrenaline surges and
relapses in M.E. for the benefit of these individuals, as well as for
newly ill M.E. patients themselves.

This paper is designed to be read together with the more detailed
Hospital or carer notes for M.E. paper.

What is an adrenaline surge and how does this affect M.E. patients?

People with M.E. can sometimes operate significantly above their actual
illness level for certain periods of time thanks to surges of adrenaline
- albeit at the cost of severe and prolonged worsening of the illness

Adrenaline is often referred to as the 'fight or flight' hormone as it
kicks into action in situations of potential danger. However, adrenaline
also kicks in when the body is in physiological difficulty, which is
very often what is happening to severe M.E. sufferers. Adrenaline surges
make the heart pump faster and raise the blood pressure, forcing blood
around the body with greater force to supply the muscles with more
oxygen, so that they can make a greater effort. Surges of adrenaline
increase the metabolism. They also relax and dilate the airways so that
more oxygen than usual can be taken in. Adrenaline surges can also
decrease the amount of pain felt. As a result of all of these factors,
adrenaline surges - while they last - have the ability to increase
physical speed, strength and other physical abilities.

Unfortunately, when these bursts of adrenaline wear off - as they must -
people with M.E. are left far more ill as a result for many days, weeks,
months or even years of overexertion. People with M.E. are harmed by
adrenaline surges, both by the physiological stress to the body of the
changes caused by adrenaline, and by the extra activity which adrenaline
enables, which may be far beyond the body's normal limits so that such
activity causes damage. For every short term 'gain' there is a far
greater loss overall.

Surges of adrenaline can last hours, days, weeks or even months at a time.

These adrenaline surges are a bit like credit cards. They allow patients
to do things that they could never otherwise do, or 'afford.' But the
interest rate is extortionate, sky high, a killer. As Clytie, a very ill
M.E. patient, explains:

i try to xplain this one in terms of money
ok, yoiu could buy a ferrari, coulnd't you?
no, i don't have the money
oh, but you could borrow lots of money, sell your house, talke up
dealing drugs, gamble, and in the end you'd have your ferrari
<blank look>
maybe for a day or so, before the l,oan sharks shoot your kneecaps off,
and the gangs blackmail you, and you have to find a way to rerpay all
that money... could take you a lifetime
<rather frightened look>
yeah. yioyu get the point

M.E. expert Dr Melvin Ramsay explains;

The degree of physical incapacity varies greatly, but is directly
related to the length of time the patient persists in physical effort
after its onset; put in another way, those patients who are given a
period of enforced rest from the onset have the best prognosis. Since
the limitations which the disease imposes vary considerably from case to
case, the responsibility for determining these rests upon the patient.
Once these are ascertained the patient is advised to fashion a pattern
of living that comes well within them.

Why do M.E. patients sometimes overexert themselves, considering the
severe consequences?

There are many reasons why this occurs, including the following:

Once a patient gets going, stopping can be very difficult. This is due
to neurological problems with stopping and starting new tasks easily,
and also because once an adrenaline surge has occurred, it takes a long
time to wear off.

When a patient has become very ill from overexertion or is in the middle
of an adrenaline surge, judgement can be affected, and the patient may
be lost in the moment and not realize how important it is for them to
stop what they are doing as soon as possible.

Resting after a relapse is often very difficult for the M.E. patient
emotionally. It can be very difficult to lie in a dark quiet room in
extreme pain and worse, with no distraction from it. It can be tempting
to keep the adrenaline surge going in a small way, to put off the crash.
(A bit like drinking more alcohol the day after a night of heavy
drinking to delay the inevitable horrible hangover.)

Many patients with M.E. have been treated appallingly in the earlier
stages of their illness. Medical abuse is very common. Patients have
often been told or forced to keep pushing through their limits and that
this is what they must do if they ever want to recover. This ignorant
advice has forced many patients to develop a very high tolerance for
pain and discomfort - and this can be a real obstacle when it comes to
training oneself to rest appropriately when experiencing minor symptoms.
Patients have often become very used to paying a high price afterwards
for every little bit of fun they have or every task they do, and have
had to accept this as a way of life for so long that change can be

Many patients, along with much of the general population, have a very
strong work ethic and at times find not pushing themselves to do things
very difficult. M.E. patients need a level of discipline at least as
high as the average Olympic athlete to control and restrict all their
activities so completely for years.

M.E. is an acute onset disease which means that patients go from healthy
to very disabled from one day to the next. Being so disabled so suddenly
is shocking and takes a long time to get used to. Particularly in the
early years of M.E., patients often feel the need to constantly push at
the boundaries to work out where their limits are. This is also often
tied to denial of the realities of the disease, and a desire to keep
ignoring physical limits in the madly optimistic hope that this will
make them go away as quickly as they came.
Other reasons include:

Due to the brutal severity of M.E., some M.E. patients must overexert
just to live or to have a little bit of basic human contact.

Many M.E. patients overexert themselves as they have no other choice,
unfortunately, and do not have the appropriate financial or practical
support they need due to the political situation facing M.E. patients.
Patients with M.E. are also often forced to overexert themselves in
order to get the welfare payments they are entitled to (and need to have
to survive) and to try and get some basic medical care.

Many M.E. patients are told that 'everyone recovers, it is just a matter
of when, and at most you will be well in 5 years' by ignorant doctors,
websites and patients that do not understand the massive difference
between the neurological disease M.E. and mere post viral fatigue
syndromes. Thus they have no idea that there is a big long-term cost
with every short-term relapse, and by the time they do get this
information it is often far too late and they have become severely
affected and greatly harmed their chances of future recovery.

Many M.E. patients are told that they are not ill, and that they cannot
do things simply because they believe they can't. This incredibly
abusive brainwashing can lead many patients to again and again try and
push past their limits in a brave but misguided effort to 'mind over
matter' the disease. Unfortunately, many patients have so much faith and
trust in their doctors that they ignore what they know to be true about
their own bodies and their disease for many months or even years, often
ending up severely affected and very disabled.

What signs may indicate a relapse or an adrenaline surge?

Signs that a M.E. patient is overexerting and/or running on adrenaline
may include the following:

Very fast and continuous talking is a sure sign of an adrenaline burst.
Speech may also become very loud as the patient becomes unable to
modulate their volume level. This may also be accompanied by fast and
jittery movements. Speech may make evident feelings of euphoria,
over-excitability or wild optimism and will often be less
well-considered than normal. The patient may also sit up or stand for
longer than usual (without realising they are doing so) or get fired up
to undertake tasks that they would usually be too ill to do. (Big
cleaning or organisational tasks for example.)

After or during an adrenaline surge, sleeping and resting is very
difficult as the patient feels 'wired' and very UNfatigued. Sleep onset
may delayed for many hours, perhaps leaving the patient unable to sleep
until 9 am or unable to sleep that night at all. The patient may also
only be able to sleep for one or two hours at a time, awaken for a few
minutes many times during the night, and/or may experience very light
sleep where the slightest noise wakes them up.

After or during an adrenaline surge, sleeping and resting is very
difficult as the patient feels 'wired' and very "unfatigued". Sleep
onset may be delayed for many hours, perhaps leaving the patient unable
to sleep until mid-morning or unable to sleep that night at all. The
patient may also only be able to sleep for one or two hours at a time,
awaken for a few minutes many times during the night, and/or may
experience very light sleep where the slightest noise wakes them up.

Particularly in the first few years of the disease, patients may sleep,
or be unconscious, for much longer than usual after overexertion,
perhaps 12 - 16 hours or more. In very severe cases, the patient may be
unable to maintain consciousness for more than a few hours a day.

When suffering a severe neurological episode M.E. patients may be
mistaken for being drunk or high on drugs. They may slur their words,
talk very fast and ramble, seem euphoric and have very poor balance.

A lack of facial expression and 'slack' facial muscles and/or extreme
facial pallor.

A burning sensation in the eyes and/or an inability to tolerate visual
stimulus and to keep the eyes open.

Excessive water drinking (to try to boost blood volume).

Excessive hunger and a desire for sugar- or carbohydrate -rich foods.
Even after eating, the patient may still feel as if they have very low
blood sugar and may need to eat far more often than usual.

Sweating or shortness of breath after minor exertion.

Visible shaking of the arms or legs or twitching facial muscles.

Paralysis and weakness in the muscles or an inability to move, speak or
understand speech.

Sudden loss of ability to walk.

Very sore throat and/or painful and tender glands in the neck (and
possibly other flu-like symptoms).

Very distinctly pink, purple or blue feet or legs, with white blotches,
after standing or sitting for too long.

Patients may complain of a severe headache or feeling of pain or
pressure at the base of the skull. This may also be accompanied by pain
behind one or both eyes or ears, or blackouts.

Sudden onset ringing in the ears or loss of hearing.

During and after overexertion, a patient's pulse will very often become
much faster (150 bpm or more), their blood pressure will become lower
and their temperature may rise and they may feel very hot (or
alternating very hot and very cold). Pulse and/or temperature
measurements may be useful in determining when a patient is
overexerting. As blood pressure readings tend to only be severely
abnormal when the patient is standing or sitting upright - which in
itself causes relapse - this test will often be counter-productive and
Other things to be aware of:

Sometimes when the patient is running on adrenaline, it is very obvious
that this is what is happening. The patient is able to do more than
usual but feels very unwell and wired; a bit like they haven't slept in
days but have had a LOT of coffee. At other times, particularly where
the adrenaline surge is long-lasting, the adrenaline effects can be more
subtle and can easily be mistaken for genuine wellbeing for a period of

When a patient declares that they are improving and suddenly able to do
tasks again which they have not been able to do for many months or years
- and this occurs right after a very big task has been completed such as
a house move or a very taxing trip to the doctor, it is almost certainly
an adrenaline surge and not a real improvement. The big task was well
beyond their limits and so the body has releases a surge of adrenaline
just to cope.
       Unfortunately, this type of lower-level but prolonged adrenaline
surge will often be less easily recognized for what it is by the
patient, especially where there are problems with memory and placing
events which occurred weeks ago in the appropriate timescale. (Events
which occurred more than a few days ago may be forgotten, or seem to
have occurred much longer ago than they actually did.)
       This type of adrenaline surge can sometimes fool even the most
experienced M.E. patients. Having hope of improvement replaced with the
realities of a severe relapse can be very disheartening, to say the least.

When a patient regularly pays a big price for doing small tasks but then
suddenly pays only a small price for a big task, suspect an adrenaline
surge. There is just no such thing as a free lunch with M.E.,
unfortunately. (No expected relapse indicates use of the 'credit card'
or that the patient's body is 'writing cheques it can't cash!')

Often a considerable rest period is needed before and after a task,
which may be hours, days, weeks or months long. For example, someone may
need 2 weeks rest before an outing, for example, and may then spend 3
weeks extremely ill afterwards recovering from it. The need for a long
rest period before a task is a sign that this task is not within usual
limits and will probably require an adrenaline surge to be completed and
so be detrimental to the patient's long-term health.
        Ideally, a patient will only complete tasks which can be done
daily or every second or third day without causing relapse. The goal is
to do only 80% of the activity that can be done sustainably each day.

Thanks to adrenaline surges, a patient may spend several hours one day a
week studying or working and then 6 days extremely ill and disabled, or
be able to struggle through study or work part-time and spend the other
half of their week as well as all their weeks off and end of year
holiday time extremely ill and disabled. This type of schedule can only
be kept up for a few years at best, as the patient becomes sicker and
sicker and less able to bounce back from relapses.

Some patients will manage their limits very carefully but still exhibit
signs that they are running on a low level of adrenaline most or all of
the time. This is likely an indication that more rest is needed and that
more challenging tasks should, if possible, be scaled back or discontinued.

When the adrenaline surge starts to wane, the patient will often feel
very irritable. Part of this is due to problems with blood sugar and so
eating a substantial meal can help the patient feel better both
physically and emotionally. Cravings for sugar and carbohydrate-rich
foods are common at this time, but a meal containing some protein, fat
and some low GI and GL carbohydrate foods is a better choice. Part of
this is also an emotional response, as coming down form an adrenaline
high is very difficult emotionally. A patient has just had a reminder of
how it might be if they were not as ill and disabled, and also has a
significant worsening of their symptoms and disability level.
       The patient may also feel very cold and shaky and even more
sensitive than usual to light and noise as an adrenaline surge starts to

When a person with M.E. starts to rest after an adrenaline surge, it
takes a little while for the adrenaline to wear off. So the patient will
start resting and slowly start to feel more and more unwell.
Unfortunately the patient will have to go through a period of feeling
much worse, in order to feel better. Starting to feel worse shows that
the adrenaline is wearing off and that the patient is resting properly.
The period of feeling very ill may last for hours, days or weeks or
longer, depending on how ill the patient is and how severely they
In contrast, when a M.E. patient who has not overexerted rests they will
feel better right away and this improvement may continue to build over
time. Thus feeling much more ill after a period of resting is another
sign that the patient has been running on adrenaline and overexerting.

What can you do to help?

When you notice fast talking, and other signs of an adrenaline burst or
surge, encourage the patient to slow down. Perhaps remind them that the
sooner they rest, the better off they will be.

When a patient is talking very fast and very loudly, subtle reminders to
speak more quietly may be helpful. (Remember that slow slurred talking
may in fact be a very good sign of health and of living within limits!)

When you notice a patient sitting or standing up when they do not need
to, or for longer than they can usually cope with, a reminder to lie
down may be helpful as the patient may not realise that they are
standing up for too long.

When the patient has completed a big task that was far beyond their
limits out of necessity, be aware from the outset that this will cause a
surge of adrenaline to be released. This surge will affect the patient
during the event but probably also for some days or weeks or months
afterwards. The patient may feel somewhat less ill and be able to do
some tasks which they haven't managed for some time. But tasks done
using adrenaline surges come at a very high cost long-term and so must
be strongly discouraged and absolutely never encouraged.
       Making sure that the patient is aware of this characteristic of
M.E. before a big task is completed and before they tragically
misinterpret these signs of serious overexertion and illness as a
desperately wanted improvement in their condition can only be helpful.

When a big adrenaline surge has occurred, the only way to stop it is to
make sure that the body is no longer placed in physiological difficulty.
For the severe M.E. patient, this will mean at least 3 days of complete
rest. (The time period of rest needed will vary with how severe and
prolonged the surge is and how ill the patient is.) Adrenaline will stop
being released when the body is at rest and time has passed allowing the
adrenaline in the system to wear off.
       Severely affected patients will need almost complete rest
constantly, to avoid adrenaline surges and relapses in symptoms.

Do not instigate conversations with a patient when they are trying hard
to come down off an adrenaline surge. You may ruin hours of solid
resting by asking a question that forces the patient's body to have to
rely on adrenaline again in order to reply. If possible, write down any
questions you have so that the patient can answer them in their own time
and in the way easiest for them. When patients are severely affected and
can't speak often, you may want to devise a system whereby they can
reply to yes and no questions or questions with 2 options using hand
signals or printed cards.

If possible, if you are a carer who visits the patient's home for a few
hours a day, make a set time to talk to the patient so that they do not
have to be in 'on' and ready to talk the whole time you are there.
Staying 'on' may require an adrenaline burst and leave the patient very
ill afterwards even of you only spoke to them very briefly. Having to be
'on' in case of interaction is almost as taxing as actually talking, for
many patients.

When you speak to a M.E. patient who is very ill or relapsing, speak
slowly, calmly and somewhat softly. Do not speak loudly or shout. Do not
ask stressful or difficult questions when the patient is at their most
ill or if it is not their 'best' time of day.

Don't repeat things unless you are asked or indicated to do so. M.E.
patients often have a significant time delay in understanding spoken
words, and they may rely on a period of silence after each statement in
order to understand what you have said.

For more information on how to appropriately treat M.E. patients and
help them to avoid relapse please see the following two essential
papers:Hospital or carer notes for M.E. and also Why patients with
severe M.E. are housebound and bedbound.

How should you use this information?

This paper largely focuses on patients who are at the severe end of the
moderate continuum to severely affected patients who are almost entirely
bedbound. It will have to be adjusted somewhat for patients who are more
moderately affected, or extremely severely affected.

How much assistance and guidance you give a M.E. patient to help them
minimise relapses depends on several factors. These include how close
you are to the patient, how receptive they are to input from you, how
ill the patient is and how well they are managing their symptoms and
relapses themselves.

M.E. patients understand their own limits very, very well almost all of
the time. All they may need from you is the occasional verbal reminder
to lie down or to rest.

Perhaps in most cases, just the fact that you have a desire to help and
have read this paper and that you both have a solid understanding of the
challenges they face and the nature of M.E. relapses will be enough.
Knowledge is power.


It may seem obvious that M.E. patients would always do what is best for
their long-term outcome, but this is not always the case. M.E. is a very
difficult disease to manage. M.E. patients are very often sick to death
of all the resting, carefulness and explaining required of them and so
anything that you can do to help is very welcome.

Thank you for taking the time to read this paper.


The full paper (properly formatted) is available here:

If you would like to link to this page, please do so using the link above
only. If you'd like to download a Word or PDF version of this text, please
click on the above link.

A one-page summary of the text is also included on this page.

Thank you to Caroline G. for editing this paper. Thank you to Victoria
for suggesting the topic of this paper. Thank you to Victoria, Frir,
Clytie and everyone else who contributed to this paper.

Best wishes everyone,
Jodi Bassett
If it is ME & you continue to overdo, you may well end up sooooooo much
worse than you are now. It happened to Jodi, it happened to me, this
determination that we are suffused with in our culture of soldiering
through & mind over matter & good people get well...& then we do "fight
the good fight"...& with this desease the price is very, very high & can
be permanent. Hate to be a harbinger of doom, I know it is hard to
imagine being more ill, but you do have an opportunity here to avoid our
fate. Hard choices I know. Aylwin, M.E. patient taken from Group
comments on the importance of avoiding overexertion in M.E.

This illness is distinguished from a variety of other post-viral states
by a unique clinical and epidemiological pattern characteristic of
enteroviral infection. Prompt recognition and advice to avoid
over-exertion is mandatory. Dr Melvin Ramsay & Dr Elizabeth Dowsett

1 comment:

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