Re: 10 Important Lessons About Pain

[Guest guest]

Yet another of your masterpieces, thank you. Like many here there are

different souces of my pain, I have mucels, joint and neuropathic

pain. Unfortunately Dxes like FM and chronic pain syndrome can lead

to poor pain management and not enough emphasis on the source of pain

or the most effective treatment for it.

This study on acupuncture to treat pain in the UK has just been

published.

Acupuncture 'more than a placebo'

Scientists say they have proof that acupuncture works in its own

right.

Sceptics have said that any benefits gained from acupuncture are

merely down to a person's expectation that the treatment will work.

But researchers at University College London and Southampton

University say they have separated out this placebo effect.

Their findings, based on a series of experiments and brain scan

results, are published in the journal NeuroImage.

Dummy treatment

The researchers used positron emission tomography (PET) scans to see

what was happening in the brains of people having acupuncture

treatment for arthritis pain.

Each of the 14 volunteers underwent each of three interventions in a

random order.

In one intervention, patients were touched with blunt needles but

were aware that the needle would not pierce the skin and that it did

not have any therapeutic value.

Another intervention involved treatment with specially

developed " trick " needles that give the impression that the skin was

being penetrated even though the needles never actually pierced the

skin.

The needles worked like stage daggers, with the tip disappearing into

the body of the needle when pressure is applied. This was designed to

make the patients believed that the treatment was real.

The third intervention was real acupuncture.

Brain activity

When the researchers analysed the patients' PET scan results they

found marked differences between the three interventions.

Only the brain areas associated with the sensation of touch were

activated when the volunteers were touched with the blunt needles.

During the trick needle treatment, an area of the brain associated

with the production of natural opiates - substances that act in a non-

specific way to relieve pain - were activated.

This same area was activated with the real acupuncture but, in

addition, another region of the brain, the insular, was excited by

the treatment.

This was a pathway known to be associated with acupuncture treatment

and thought to be involved in pain modulation.

of the British Acupuncture Council said: " This is very

positive news for acupuncture and this latest research is an exciting

illustration of what acupuncturists have known for a long time - that

acupuncture works and its effectiveness goes beyond the placebo

effect. "

Professor Henry McQuay, professor of pain relief at the University of

Oxford and member of the Bandolier group that looks at the evidence

behind different medical treatments, said: " The great bulk of the

randomised controlled trials to date do not provide convincing

evidence of pain relief over placebo.

" Some people do report that acupuncture makes them feel better.

" But it is extremely difficult, technically, to study acupuncture and

tease out the placebo effect. "

Story from BBC NEWS:

http://news.bbc.co.uk/go/pr/fr/-/1/hi/health/4493011.stm

Published: 2005/04/30 22:57:58 GMT

© BBC MMV

In infections , " Schaafsma "

<compucruz@y...> wrote:

> 10 Important Lessons About Pain by scha

>

> [The source of the information presented here is a patchwork of

> medical research, exhanges with medical professionals, and personal

> experience. Any errors are likely to be mine.]

>

> 1. All pain is not the same

>

> Somewhat independently of the diagnosis that is it's 'first cause,'

> pain tends to occur in patterns which are then distilled into

> syndromes so they can be researched and discussed in a common

> language.

>

> It is possible to correctly diagnose the original cause of pain,

> whatever combination of injury, infection, or genetic defect may be

> involved, and yet be mistaken in the diagnosis of the pain itself.

>

> A story: a patient has been suffering with very fierce, relentless,

> poorly managed pain for a quarter century, and now has the formal

> diagnosis of fibromyalgia (which is really more a pain syndrome

than

> a full diagnosis). This is a mistake, however. Somehow doctors have

> failed to note damage to specific nerves. As a result the patient

> has been told to exercise, and not taken seriously when she

> complains that this makes her pain much worse.

>

> Once the nerve problems have been correctly identified, it becomes

> possible to treat the pain, but the treatment largely inverts what

> the patient had prescribed under the " fibromyalgia " label.

>

> 2. Nociceptive versus neuropathic pain

>

> Pain medicine distinguishes between two types of pain. There is

> nociceptive pain, which is the ordinary pain that we all sooner or

> later experience, that is grounded in tissue strain or injury.

> Opioid pain medications are quite effective at reducing this type

of

> pain and compared to many of the alternate drug treatments have a

> benign side-effect profile. There is a non-nociceptive kind of

pain,

> referred to as neuropathic pain, that springs from damage to the

> nervous system itself.

>

> This second type of pain is not reproducibly controlled by any pain

> treatment now approved for use in humans. There are experimental

> drugs, which have been used with animals for a long time, which are

> effective, but they tend to have associated toxicities that rule

out

> their use in human beings. There is one called MK801 that has been

> known since the early 80s.

>

> 3. Neuropathic pain treatments

>

> The approved treatments are a motley assortment of off-label drugs,

> most of them originally prescribed to treat one or another

> psychiatric or neurological disorder. They are slow to act, require

> extended trial periods to determine efficacy, and have a good many

> more side-effects than the opioid medications. These drugs have as

> their main advantage a 'respectability' that due to our culture

does

> not extend to 'controlled substances.' However, if you can match

the

> right drug with the right patient, you can sometimes get some

> measure of relief.

>

> Opioid medications can also be used to treat neuropathic or " nerve "

> pain, but with partial and varying success. Because you aren't

> hitting the right receptors, it's harder to avoid side-effects. MS

> patients report that marijuana helps, and studies show that the

> cannibinols that are the active ingredient in marijuana slow the

> neurological damage in several progressive disorders whose end

point

> is total dementia.

>

> Alright, those are the pedestrian lessons. Bookmark them, they may

> be of some use to you if you encounter a patient like me for whom

> pain is a primary symptom.

>

> 4. The biology of pain

>

> When you start to get into the biology of pain, the lines

separating

> this symptom from other neurological complaints start to look very

> artificial. The same processes that are implicated in pain lead to

> other tissue and nervous system pathologies. For nociceptive pain,

> nerves are still critically involved, but in tandem with whatever

> tissue injury is triggering them. In neuropathic pain, the same

> abnormalities that cause fatigue and cognitive slowing are often

> implicated.

>

> The balance of the problem may tilt toward either the central or

> peripheral nervous systems, toward pain or non-pain symptoms, and

> may spread from one side to the other or progress in both

> simultaeously.

>

> 5. Pathologies of the brain and nervous system

>

> Brain loss like I have experienced can be both cause and effect of

> chronic pain, and interrupting the cycle can help to reduce future

> damage.

>

> How the brain is used determines its development. I have always had

> a 'thinker' element to my personality, so my brain has been asked

to

> take repeated runs at difficult questions for just about as long as

> I've been alive. There is probably a fair level of redundancy at

> work there, in the physical instrument, because it has performed

> these tasks so consistently over the years.

>

> People tend to assume that brain damage means impaired speech. They

> do not know [or want to know, necessarily] that everything which

> contributes to an aware state is registered through the brain, and

> any part of that can be injured and cease to function. Most of the

> damage in my brain is not to the cerebral cortex, where the 'higher

> functions' reside, so I can still string a sentence together. Pain,

> altered sensations that are unpleasant but not painful, sensory

> confusion, disorientation, visual and auditory distortion, and

motor

> impairment can and do become extreme while higher functions we

> associate with a 'healthy brain' are intact.

>

> You could think of it as an emphasis. Because eventually the damage

> to other brain centers will directly or indirectly contribute to

the

> damage in the centers of abstract thought and communication.

>

> 6. Trade-offs between pain relief and cognition

>

> Pain in this context is difficult to treat in part because one

wants

> to preserve the level of cognitive function that remains, and there

> can easily be a trade-off. On the plus side, by relieving pain you

> improve sleep [with endocrine, immunological and other benefits]

and

> reduce the total processing load. On the down side, drugs

prescribed

> for neuropathic pain often list fatigue and disorientation among

> their more common side effects.

>

> When you treat the mu-opioid receptors of the nervous system, one

> effect can be a compensatory increase in sensitivity in the NMDA

> receptors that are implicated in neuropathic pain. Usually this is

> not so pronounced that it cancels out the benefit, and the

> compensation may grow less pronounced over time.

>

> There are non-NMDA receptors in the brain, also involved in

> neuroexcitation, including the AMPA receptors. Like the NMDA

> receptors, these are activated by glutamate. There is no effective

> blocking agent, however, for AMPA receptors. What we can do,

> perhaps, is to safely escort excess extracellular glutamate away

> from these receptors. Which may be why some have found Gluathione

so

> helpful for pain and unpleasant neuro-excitatory states.

>

> If we understood all the mechanisms, perhaps it would be possible

to

> reverse neuropathic pain in all patients by manipulating receptors

> and their " ligands " or binding molecules. But we don't have that

> kind of understanding, and so what works for one patient can easily

> fail another.

>

> The nervous system is not just an enormously complex system of

> communication and storage networks, but it moves at this blinding

> speed. Throwing something into a flow that fast is tricky, and you

> have to be very careful.

>

> On the other hand, because of that same speed, one can literally

die

> a thousand deaths in the span of a few minutes. Instantaneous

> processes, repeated endlessly, can create a powerful sense of time

> slowing down, and make possible 'an eternity of suffering' within a

> finite block of time.

>

> 7. Applying rules from life

>

> Many of the rules we know from " life " apply, because they are rules

> of CONSCIOUS life, which is as much a product of mind as matter.

>

> For example, 'if you don't like this conversation, go and start

your

> own.' The joke about this is the guy who steps on his own toe to

get

> rid of a headache. But there are other, more sophisticated,

> variations on that theme. Stimulating one part of the brain to cope

> with hyperstimulation in another may seem counter-intuitive, and is

> almost certainly a risky strategy, but sometimes it's all you have

> left, because there is no dimming the bad conversation between

> damaged nerves that is driving you insane.

>

> We all learn not to make a fuss about pain, because " it's

temporary,

> and fussing over it just makes it worse. "

>

> This is not true for some of us. The pain is chronic, and so bad

> that talking about it is the alternative to being consumed alive by

> a fire like the fire of hell, that burns and burns without ever

> consuming you.

>

> There are variations in pain sensitivity between healthy people,

and

> much wider variations among the ill. Sometimes illness brings loss

> of sensation, which can be its own kind of agony. There are people

> who love to boast about their tolerance for pain, how they never

> take anything for it. They imply that this is a virtue, the product

> of a stoic wisdom. Pain medicine suggests they are full of hot air,

> because they have no way of knowing whether the pain they endure is

> even a flash in the pain compared to someone else's.

>

> 8. Pain is relative, but only to itself

>

> One of the many weird aspects of progressive, severe chronic pain

is

> that one is constantly saying, quite accurately, 'I am at my limit'

> but then the intensity and/or duration are cranked up several more

> notches and the next time you say 'I am at my limit' your limit has

> moved farther down the spectrum toward " a living hell. " Pain is

> relative, but only to itself. The fact that I now feel something

> even worse does not make the pain I was feeling last week / month /

> year any less difficult, it just moves the upper limit of tolerance

> farther up the pain scale.

>

> This can be a real difficulty in establishing the efficacy of pain

> treatment. If you get me back to where I was last week, you've

> reduced the total burden of pain but since last week was already

> intolerable I may not notice much of a change.

>

> 9. Pain is multilayered

>

> There is how I feel, and then there is how I FEEL about how I feel.

> You could count the layers of that particular onion forever, except

> that the deeper you go the less you can do to ease it and the more

> the onion makes you cry.

>

> The mind becomes the all-important agent of arbitration between

pain

> and the will to live. Friends, family and loved ones may feel that

> the pain patient has become short-termpered, intolerant,

> dictatorial, insistent on having his or her way.

>

> They may be right! But they may also miss the context for this

> evolution, which is really that the mind is fighting a lonely

battle

> to maintain a state in which the will to live can persist. This is

> obviously not limited to physical pain, it comes into play for me

> just as much in relation to sensory overload, cognitive impairment,

> etc. But the immediate stakes may be higher when searing pain is

one

> of the elements in the mix.

>

> 10. You don't know the half of it [and neither do I]

>

> The patient with severe, chronic pain may appear exquisitely

> sensitive to others, and yet be effectively DEsensitized to the

> better part of the pain they are experiencing.

>

> I have developed a kind of dystonia - a persistent, involuntary

> impulse to hold my body in unnatural positions that have to become

> quite painful before I even notice them. The nervous system can

only

> absorb so much information at once. The upper limit varies between

> individuals and within individuals from one moment to the next. But

> a really significant portion of pain may not be registering at all,

> in the patient who others compare to 'the princess and the pea.'

>

> This means that one has to be alert. Take the whole question of bed

> rest. There are studies showing that the value of bed rest for pain

> management is generally overstated, but on some occasions it is

> going to be helpful. But the pain patient may avoid it, because it

> is easier to stimulate other parts of the brain sitting up.

>

> Because pain circuits are overloaded, patients may not realize that

> they are in fact making themselves worse by getting inadequate

rest.

> Because pain circuits may be impossible to quiet, caring observers

> may promotote a level of rest that would in fact simply make the

> experience harder to bear.

[Guest guest]

Oooh, thanks for that stuff about acupuncture! I'm glad they

incorporate it at the pain clinic. It's hard for me to get to the

local acupuncture clinic, but that may change if I start to improve.

I've had good luck with acupuncture myself, in the past. I believe

it can really help!

Thinking fondly of you,

> > 10 Important Lessons About Pain by scha

> >

> > [The source of the information presented here is a patchwork of

> > medical research, exhanges with medical professionals, and

personal

> > experience. Any errors are likely to be mine.]

> >

> > 1. All pain is not the same

> >

> > Somewhat independently of the diagnosis that is it's 'first

cause,'

> > pain tends to occur in patterns which are then distilled into

> > syndromes so they can be researched and discussed in a common

> > language.

> >

> > It is possible to correctly diagnose the original cause of pain,

> > whatever combination of injury, infection, or genetic defect may

be

> > involved, and yet be mistaken in the diagnosis of the pain

itself.

> >

> > A story: a patient has been suffering with very fierce,

relentless,

> > poorly managed pain for a quarter century, and now has the

formal

> > diagnosis of fibromyalgia (which is really more a pain syndrome

> than

> > a full diagnosis). This is a mistake, however. Somehow doctors

have

> > failed to note damage to specific nerves. As a result the

patient

> > has been told to exercise, and not taken seriously when she

> > complains that this makes her pain much worse.

> >

> > Once the nerve problems have been correctly identified, it

becomes

> > possible to treat the pain, but the treatment largely inverts

what

> > the patient had prescribed under the " fibromyalgia " label.

> >

> > 2. Nociceptive versus neuropathic pain

> >

> > Pain medicine distinguishes between two types of pain. There is

> > nociceptive pain, which is the ordinary pain that we all sooner

or

> > later experience, that is grounded in tissue strain or injury.

> > Opioid pain medications are quite effective at reducing this

type

> of

> > pain and compared to many of the alternate drug treatments have

a

> > benign side-effect profile. There is a non-nociceptive kind of

> pain,

> > referred to as neuropathic pain, that springs from damage to the

> > nervous system itself.

> >

> > This second type of pain is not reproducibly controlled by any

pain

> > treatment now approved for use in humans. There are experimental

> > drugs, which have been used with animals for a long time, which

are

> > effective, but they tend to have associated toxicities that rule

> out

> > their use in human beings. There is one called MK801 that has

been

> > known since the early 80s.

> >

> > 3. Neuropathic pain treatments

> >

> > The approved treatments are a motley assortment of off-label

drugs,

> > most of them originally prescribed to treat one or another

> > psychiatric or neurological disorder. They are slow to act,

require

> > extended trial periods to determine efficacy, and have a good

many

> > more side-effects than the opioid medications. These drugs have

as

> > their main advantage a 'respectability' that due to our culture

> does

> > not extend to 'controlled substances.' However, if you can match

> the

> > right drug with the right patient, you can sometimes get some

> > measure of relief.

> >

> > Opioid medications can also be used to treat neuropathic

or " nerve "

> > pain, but with partial and varying success. Because you aren't

> > hitting the right receptors, it's harder to avoid side-effects.

MS

> > patients report that marijuana helps, and studies show that the

> > cannibinols that are the active ingredient in marijuana slow the

> > neurological damage in several progressive disorders whose end

> point

> > is total dementia.

> >

> > Alright, those are the pedestrian lessons. Bookmark them, they

may

> > be of some use to you if you encounter a patient like me for

whom

> > pain is a primary symptom.

> >

> > 4. The biology of pain

> >

> > When you start to get into the biology of pain, the lines

> separating

> > this symptom from other neurological complaints start to look

very

> > artificial. The same processes that are implicated in pain lead

to

> > other tissue and nervous system pathologies. For nociceptive

pain,

> > nerves are still critically involved, but in tandem with

whatever

> > tissue injury is triggering them. In neuropathic pain, the same

> > abnormalities that cause fatigue and cognitive slowing are often

> > implicated.

> >

> > The balance of the problem may tilt toward either the central or

> > peripheral nervous systems, toward pain or non-pain symptoms,

and

> > may spread from one side to the other or progress in both

> > simultaeously.

> >

> > 5. Pathologies of the brain and nervous system

> >

> > Brain loss like I have experienced can be both cause and effect

of

> > chronic pain, and interrupting the cycle can help to reduce

future

> > damage.

> >

> > How the brain is used determines its development. I have always

had

> > a 'thinker' element to my personality, so my brain has been

asked

> to

> > take repeated runs at difficult questions for just about as long

as

> > I've been alive. There is probably a fair level of redundancy at

> > work there, in the physical instrument, because it has performed

> > these tasks so consistently over the years.

> >

> > People tend to assume that brain damage means impaired speech.

They

> > do not know [or want to know, necessarily] that everything which

> > contributes to an aware state is registered through the brain,

and

> > any part of that can be injured and cease to function. Most of

the

> > damage in my brain is not to the cerebral cortex, where

the 'higher

> > functions' reside, so I can still string a sentence together.

Pain,

> > altered sensations that are unpleasant but not painful, sensory

> > confusion, disorientation, visual and auditory distortion, and

> motor

> > impairment can and do become extreme while higher functions we

> > associate with a 'healthy brain' are intact.

> >

> > You could think of it as an emphasis. Because eventually the

damage

> > to other brain centers will directly or indirectly contribute to

> the

> > damage in the centers of abstract thought and communication.

> >

> > 6. Trade-offs between pain relief and cognition

> >

> > Pain in this context is difficult to treat in part because one

> wants

> > to preserve the level of cognitive function that remains, and

there

> > can easily be a trade-off. On the plus side, by relieving pain

you

> > improve sleep [with endocrine, immunological and other benefits]

> and

> > reduce the total processing load. On the down side, drugs

> prescribed

> > for neuropathic pain often list fatigue and disorientation among

> > their more common side effects.

> >

> > When you treat the mu-opioid receptors of the nervous system,

one

> > effect can be a compensatory increase in sensitivity in the NMDA

> > receptors that are implicated in neuropathic pain. Usually this

is

> > not so pronounced that it cancels out the benefit, and the

> > compensation may grow less pronounced over time.

> >

> > There are non-NMDA receptors in the brain, also involved in

> > neuroexcitation, including the AMPA receptors. Like the NMDA

> > receptors, these are activated by glutamate. There is no

effective

> > blocking agent, however, for AMPA receptors. What we can do,

> > perhaps, is to safely escort excess extracellular glutamate away

> > from these receptors. Which may be why some have found

Gluathione

> so

> > helpful for pain and unpleasant neuro-excitatory states.

> >

> > If we understood all the mechanisms, perhaps it would be

possible

> to

> > reverse neuropathic pain in all patients by manipulating

receptors

> > and their " ligands " or binding molecules. But we don't have that

> > kind of understanding, and so what works for one patient can

easily

> > fail another.

> >

> > The nervous system is not just an enormously complex system of

> > communication and storage networks, but it moves at this

blinding

> > speed. Throwing something into a flow that fast is tricky, and

you

> > have to be very careful.

> >

> > On the other hand, because of that same speed, one can literally

> die

> > a thousand deaths in the span of a few minutes. Instantaneous

> > processes, repeated endlessly, can create a powerful sense of

time

> > slowing down, and make possible 'an eternity of suffering'

within a

> > finite block of time.

> >

> > 7. Applying rules from life

> >

> > Many of the rules we know from " life " apply, because they are

rules

> > of CONSCIOUS life, which is as much a product of mind as matter.

> >

> > For example, 'if you don't like this conversation, go and start

> your

> > own.' The joke about this is the guy who steps on his own toe to

> get

> > rid of a headache. But there are other, more sophisticated,

> > variations on that theme. Stimulating one part of the brain to

cope

> > with hyperstimulation in another may seem counter-intuitive, and

is

> > almost certainly a risky strategy, but sometimes it's all you

have

> > left, because there is no dimming the bad conversation between

> > damaged nerves that is driving you insane.

> >

> > We all learn not to make a fuss about pain, because " it's

> temporary,

> > and fussing over it just makes it worse. "

> >

> > This is not true for some of us. The pain is chronic, and so bad

> > that talking about it is the alternative to being consumed alive

by

> > a fire like the fire of hell, that burns and burns without ever

> > consuming you.

> >

> > There are variations in pain sensitivity between healthy people,

> and

> > much wider variations among the ill. Sometimes illness brings

loss

> > of sensation, which can be its own kind of agony. There are

people

> > who love to boast about their tolerance for pain, how they never

> > take anything for it. They imply that this is a virtue, the

product

> > of a stoic wisdom. Pain medicine suggests they are full of hot

air,

> > because they have no way of knowing whether the pain they endure

is

> > even a flash in the pain compared to someone else's.

> >

> > 8. Pain is relative, but only to itself

> >

> > One of the many weird aspects of progressive, severe chronic

pain

> is

> > that one is constantly saying, quite accurately, 'I am at my

limit'

> > but then the intensity and/or duration are cranked up several

more

> > notches and the next time you say 'I am at my limit' your limit

has

> > moved farther down the spectrum toward " a living hell. " Pain is

> > relative, but only to itself. The fact that I now feel something

> > even worse does not make the pain I was feeling last week /

month /

> > year any less difficult, it just moves the upper limit of

tolerance

> > farther up the pain scale.

> >

> > This can be a real difficulty in establishing the efficacy of

pain

> > treatment. If you get me back to where I was last week, you've

> > reduced the total burden of pain but since last week was already

> > intolerable I may not notice much of a change.

> >

> > 9. Pain is multilayered

> >

> > There is how I feel, and then there is how I FEEL about how I

feel.

> > You could count the layers of that particular onion forever,

except

> > that the deeper you go the less you can do to ease it and the

more

> > the onion makes you cry.

> >

> > The mind becomes the all-important agent of arbitration between

> pain

> > and the will to live. Friends, family and loved ones may feel

that

> > the pain patient has become short-termpered, intolerant,

> > dictatorial, insistent on having his or her way.

> >

> > They may be right! But they may also miss the context for this

> > evolution, which is really that the mind is fighting a lonely

> battle

> > to maintain a state in which the will to live can persist. This

is

> > obviously not limited to physical pain, it comes into play for

me

> > just as much in relation to sensory overload, cognitive

impairment,

> > etc. But the immediate stakes may be higher when searing pain is

> one

> > of the elements in the mix.

> >

> > 10. You don't know the half of it [and neither do I]

> >

> > The patient with severe, chronic pain may appear exquisitely

> > sensitive to others, and yet be effectively DEsensitized to the

> > better part of the pain they are experiencing.

> >

> > I have developed a kind of dystonia - a persistent, involuntary

> > impulse to hold my body in unnatural positions that have to

become

> > quite painful before I even notice them. The nervous system can

> only

> > absorb so much information at once. The upper limit varies

between

> > individuals and within individuals from one moment to the next.

But

> > a really significant portion of pain may not be registering at

all,

> > in the patient who others compare to 'the princess and the pea.'

> >

> > This means that one has to be alert. Take the whole question of

bed

> > rest. There are studies showing that the value of bed rest for

pain

> > management is generally overstated, but on some occasions it is

> > going to be helpful. But the pain patient may avoid it, because

it

> > is easier to stimulate other parts of the brain sitting up.

> >

> > Because pain circuits are overloaded, patients may not realize

that

> > they are in fact making themselves worse by getting inadequate

> rest.

> > Because pain circuits may be impossible to quiet, caring

observers

> > may promotote a level of rest that would in fact simply make the

> > experience harder to bear.

[Guest guest]

Yeah me too: no cure from acupuncture obviously but sometimes even

the more traditional Chinese acupuncture is the only treatment that

works for some of the physical consequences of my neuroborreliosis

and other infections.

When I was first Dx with mononeuritix multiplex complicating a viral

infection, then a PVFS, ME etc, a heamatologist back in the early 80s

recommended acupuncture. This heamatologist had studied traditional

Chinese Medicine and its history, he considered acupuncture my best

hope of improving my immune response which had taken a real dive at

that time, so much so he thought I had AIDS initially. In his opinion

acupuncture was safer than anything he, or our NHS, had to offer at

the time and more likely to have a positive effect.

Lowering your pain levels and getting more sleep is essential to

healing, let alone your quality of life, it's a priority.

Thinking fondly of you too and wishing very hard that you find the

best way forward soon. I still have a loooong way to go, no changes

in my periperhal neuropathy but there have been positive changes in

some of the CNS symptoms; getting more sleep has been a major

ccontributor to that. My mood on good days is incredibly calm and

easy going, the old me has popped back for a while, likewise being

able to link my thoughts a little better: until my next herx that is.

Cheers, Tansy

> > > 10 Important Lessons About Pain by scha

> > >

> > > [The source of the information presented here is a patchwork of

> > > medical research, exhanges with medical professionals, and

> personal

> > > experience. Any errors are likely to be mine.]

> > >

> > > 1. All pain is not the same

> > >

> > > Somewhat independently of the diagnosis that is it's 'first

> cause,'

> > > pain tends to occur in patterns which are then distilled into

> > > syndromes so they can be researched and discussed in a common

> > > language.

> > >

> > > It is possible to correctly diagnose the original cause of

pain,

> > > whatever combination of injury, infection, or genetic defect

may

> be

> > > involved, and yet be mistaken in the diagnosis of the pain

> itself.

> > >

> > > A story: a patient has been suffering with very fierce,

> relentless,

> > > poorly managed pain for a quarter century, and now has the

> formal

> > > diagnosis of fibromyalgia (which is really more a pain syndrome

> > than

> > > a full diagnosis). This is a mistake, however. Somehow doctors

> have

> > > failed to note damage to specific nerves. As a result the

> patient

> > > has been told to exercise, and not taken seriously when she

> > > complains that this makes her pain much worse.

> > >

> > > Once the nerve problems have been correctly identified, it

> becomes

> > > possible to treat the pain, but the treatment largely inverts

> what

> > > the patient had prescribed under the " fibromyalgia " label.

> > >

> > > 2. Nociceptive versus neuropathic pain

> > >

> > > Pain medicine distinguishes between two types of pain. There is

> > > nociceptive pain, which is the ordinary pain that we all sooner

> or

> > > later experience, that is grounded in tissue strain or injury.

> > > Opioid pain medications are quite effective at reducing this

> type

> > of

> > > pain and compared to many of the alternate drug treatments have

> a

> > > benign side-effect profile. There is a non-nociceptive kind of

> > pain,

> > > referred to as neuropathic pain, that springs from damage to

the

> > > nervous system itself.

> > >

> > > This second type of pain is not reproducibly controlled by any

> pain

> > > treatment now approved for use in humans. There are

experimental

> > > drugs, which have been used with animals for a long time, which

> are

> > > effective, but they tend to have associated toxicities that

rule

> > out

> > > their use in human beings. There is one called MK801 that has

> been

> > > known since the early 80s.

> > >

> > > 3. Neuropathic pain treatments

> > >

> > > The approved treatments are a motley assortment of off-label

> drugs,

> > > most of them originally prescribed to treat one or another

> > > psychiatric or neurological disorder. They are slow to act,

> require

> > > extended trial periods to determine efficacy, and have a good

> many

> > > more side-effects than the opioid medications. These drugs have

> as

> > > their main advantage a 'respectability' that due to our culture

> > does

> > > not extend to 'controlled substances.' However, if you can

match

> > the

> > > right drug with the right patient, you can sometimes get some

> > > measure of relief.

> > >

> > > Opioid medications can also be used to treat neuropathic

> or " nerve "

> > > pain, but with partial and varying success. Because you aren't

> > > hitting the right receptors, it's harder to avoid side-effects.

> MS

> > > patients report that marijuana helps, and studies show that the

> > > cannibinols that are the active ingredient in marijuana slow

the

> > > neurological damage in several progressive disorders whose end

> > point

> > > is total dementia.

> > >

> > > Alright, those are the pedestrian lessons. Bookmark them, they

> may

> > > be of some use to you if you encounter a patient like me for

> whom

> > > pain is a primary symptom.

> > >

> > > 4. The biology of pain

> > >

> > > When you start to get into the biology of pain, the lines

> > separating

> > > this symptom from other neurological complaints start to look

> very

> > > artificial. The same processes that are implicated in pain lead

> to

> > > other tissue and nervous system pathologies. For nociceptive

> pain,

> > > nerves are still critically involved, but in tandem with

> whatever

> > > tissue injury is triggering them. In neuropathic pain, the same

> > > abnormalities that cause fatigue and cognitive slowing are

often

> > > implicated.

> > >

> > > The balance of the problem may tilt toward either the central

or

> > > peripheral nervous systems, toward pain or non-pain symptoms,

> and

> > > may spread from one side to the other or progress in both

> > > simultaeously.

> > >

> > > 5. Pathologies of the brain and nervous system

> > >

> > > Brain loss like I have experienced can be both cause and effect

> of

> > > chronic pain, and interrupting the cycle can help to reduce

> future

> > > damage.

> > >

> > > How the brain is used determines its development. I have always

> had

> > > a 'thinker' element to my personality, so my brain has been

> asked

> > to

> > > take repeated runs at difficult questions for just about as

long

> as

> > > I've been alive. There is probably a fair level of redundancy

at

> > > work there, in the physical instrument, because it has

performed

> > > these tasks so consistently over the years.

> > >

> > > People tend to assume that brain damage means impaired speech.

> They

> > > do not know [or want to know, necessarily] that everything

which

> > > contributes to an aware state is registered through the brain,

> and

> > > any part of that can be injured and cease to function. Most of

> the

> > > damage in my brain is not to the cerebral cortex, where

> the 'higher

> > > functions' reside, so I can still string a sentence together.

> Pain,

> > > altered sensations that are unpleasant but not painful, sensory

> > > confusion, disorientation, visual and auditory distortion, and

> > motor

> > > impairment can and do become extreme while higher functions we

> > > associate with a 'healthy brain' are intact.

> > >

> > > You could think of it as an emphasis. Because eventually the

> damage

> > > to other brain centers will directly or indirectly contribute

to

> > the

> > > damage in the centers of abstract thought and communication.

> > >

> > > 6. Trade-offs between pain relief and cognition

> > >

> > > Pain in this context is difficult to treat in part because one

> > wants

> > > to preserve the level of cognitive function that remains, and

> there

> > > can easily be a trade-off. On the plus side, by relieving pain

> you

> > > improve sleep [with endocrine, immunological and other

benefits]

> > and

> > > reduce the total processing load. On the down side, drugs

> > prescribed

> > > for neuropathic pain often list fatigue and disorientation

among

> > > their more common side effects.

> > >

> > > When you treat the mu-opioid receptors of the nervous system,

> one

> > > effect can be a compensatory increase in sensitivity in the

NMDA

> > > receptors that are implicated in neuropathic pain. Usually this

> is

> > > not so pronounced that it cancels out the benefit, and the

> > > compensation may grow less pronounced over time.

> > >

> > > There are non-NMDA receptors in the brain, also involved in

> > > neuroexcitation, including the AMPA receptors. Like the NMDA

> > > receptors, these are activated by glutamate. There is no

> effective

> > > blocking agent, however, for AMPA receptors. What we can do,

> > > perhaps, is to safely escort excess extracellular glutamate

away

> > > from these receptors. Which may be why some have found

> Gluathione

> > so

> > > helpful for pain and unpleasant neuro-excitatory states.

> > >

> > > If we understood all the mechanisms, perhaps it would be

> possible

> > to

> > > reverse neuropathic pain in all patients by manipulating

> receptors

> > > and their " ligands " or binding molecules. But we don't have

that

> > > kind of understanding, and so what works for one patient can

> easily

> > > fail another.

> > >

> > > The nervous system is not just an enormously complex system of

> > > communication and storage networks, but it moves at this

> blinding

> > > speed. Throwing something into a flow that fast is tricky, and

> you

> > > have to be very careful.

> > >

> > > On the other hand, because of that same speed, one can

literally

> > die

> > > a thousand deaths in the span of a few minutes. Instantaneous

> > > processes, repeated endlessly, can create a powerful sense of

> time

> > > slowing down, and make possible 'an eternity of suffering'

> within a

> > > finite block of time.

> > >

> > > 7. Applying rules from life

> > >

> > > Many of the rules we know from " life " apply, because they are

> rules

> > > of CONSCIOUS life, which is as much a product of mind as matter.

> > >

> > > For example, 'if you don't like this conversation, go and start

> > your

> > > own.' The joke about this is the guy who steps on his own toe

to

> > get

> > > rid of a headache. But there are other, more sophisticated,

> > > variations on that theme. Stimulating one part of the brain to

> cope

> > > with hyperstimulation in another may seem counter-intuitive,

and

> is

> > > almost certainly a risky strategy, but sometimes it's all you

> have

> > > left, because there is no dimming the bad conversation between

> > > damaged nerves that is driving you insane.

> > >

> > > We all learn not to make a fuss about pain, because " it's

> > temporary,

> > > and fussing over it just makes it worse. "

> > >

> > > This is not true for some of us. The pain is chronic, and so

bad

> > > that talking about it is the alternative to being consumed

alive

> by

> > > a fire like the fire of hell, that burns and burns without ever

> > > consuming you.

> > >

> > > There are variations in pain sensitivity between healthy

people,

> > and

> > > much wider variations among the ill. Sometimes illness brings

> loss

> > > of sensation, which can be its own kind of agony. There are

> people

> > > who love to boast about their tolerance for pain, how they

never

> > > take anything for it. They imply that this is a virtue, the

> product

> > > of a stoic wisdom. Pain medicine suggests they are full of hot

> air,

> > > because they have no way of knowing whether the pain they

endure

> is

> > > even a flash in the pain compared to someone else's.

> > >

> > > 8. Pain is relative, but only to itself

> > >

> > > One of the many weird aspects of progressive, severe chronic

> pain

> > is

> > > that one is constantly saying, quite accurately, 'I am at my

> limit'

> > > but then the intensity and/or duration are cranked up several

> more

> > > notches and the next time you say 'I am at my limit' your limit

> has

> > > moved farther down the spectrum toward " a living hell. " Pain is

> > > relative, but only to itself. The fact that I now feel

something

> > > even worse does not make the pain I was feeling last week /

> month /

> > > year any less difficult, it just moves the upper limit of

> tolerance

> > > farther up the pain scale.

> > >

> > > This can be a real difficulty in establishing the efficacy of

> pain

> > > treatment. If you get me back to where I was last week, you've

> > > reduced the total burden of pain but since last week was

already

> > > intolerable I may not notice much of a change.

> > >

> > > 9. Pain is multilayered

> > >

> > > There is how I feel, and then there is how I FEEL about how I

> feel.

> > > You could count the layers of that particular onion forever,

> except

> > > that the deeper you go the less you can do to ease it and the

> more

> > > the onion makes you cry.

> > >

> > > The mind becomes the all-important agent of arbitration between

> > pain

> > > and the will to live. Friends, family and loved ones may feel

> that

> > > the pain patient has become short-termpered, intolerant,

> > > dictatorial, insistent on having his or her way.

> > >

> > > They may be right! But they may also miss the context for this

> > > evolution, which is really that the mind is fighting a lonely

> > battle

> > > to maintain a state in which the will to live can persist. This

> is

> > > obviously not limited to physical pain, it comes into play for

> me

> > > just as much in relation to sensory overload, cognitive

> impairment,

> > > etc. But the immediate stakes may be higher when searing pain

is

> > one

> > > of the elements in the mix.

> > >

> > > 10. You don't know the half of it [and neither do I]

> > >

> > > The patient with severe, chronic pain may appear exquisitely

> > > sensitive to others, and yet be effectively DEsensitized to the

> > > better part of the pain they are experiencing.

> > >

> > > I have developed a kind of dystonia - a persistent, involuntary

> > > impulse to hold my body in unnatural positions that have to

> become

> > > quite painful before I even notice them. The nervous system can

> > only

> > > absorb so much information at once. The upper limit varies

> between

> > > individuals and within individuals from one moment to the next.

> But

> > > a really significant portion of pain may not be registering at

> all,

> > > in the patient who others compare to 'the princess and the pea.'

> > >

> > > This means that one has to be alert. Take the whole question of

> bed

> > > rest. There are studies showing that the value of bed rest for

> pain

> > > management is generally overstated, but on some occasions it is

> > > going to be helpful. But the pain patient may avoid it, because

> it

> > > is easier to stimulate other parts of the brain sitting up.

> > >

> > > Because pain circuits are overloaded, patients may not realize

> that

> > > they are in fact making themselves worse by getting inadequate

> > rest.

> > > Because pain circuits may be impossible to quiet, caring

> observers

> > > may promotote a level of rest that would in fact simply make

the

> > > experience harder to bear.