Lessons About Pain

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 practical 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 mostly 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 mostly 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.

_There is a certain relativity with pain. And fear of the cost of the hospital, and time lost due to injury, can add greatly to pain. ("pain is alot more intense when one has no health coverage"! -- believe me, I know.).

_And there is the additional mental pain from having been set back, by pain, in your fight to do what you have to do for the future of humanity. This can be tremendous, too.

_But as many of you know, the reaction to our pain by orhers can make a huge difference in how easy it is to bear, too. Any kind of "Invisible" pain- even more so if aquatic aviarian physicians tell you it's "all in your head" - is surely the hardest to deal with!

_My heart goes out to all those who are facing that, and all other kind of pain, as well.
DaveS

One of the most fascinating things to me is that this is so true: you underestimate the power of bedrest (and maybe don't always get enough) because it is easier to keep other parts of the brain stimulated, so you don't feel the pain.

Wow, I am a poster girl for doing that.

Thank you for such fascinating insights.

A couple additions:

First, we all have a right to pain relief. Just as nobody should settle for a doctor who says the pain is all in your head, nobody should settle for a doctor who says the pain will go away when the Lyme is gone.

Right when I wake up I am in severe pain.
Unitll I FORCE myself to move, have a cup of coffee and then my pain goes down.

Ive been waking up in pain for years.
RIght now Im in pain.

Exercise is certainly helpful if one can tolerate it, but in a thread about pain one has to keep in mind that some may not be able to exercise much at all.

I can't walk around the block, or walk a even a single block without stopping to rest - and I was working out at the gym and hiking just a few years ago.

But you are quite right that once you know your limits it is important to do what you can safely to keep everything moving. And also get plenty of rest. Your body can pump out significantly more blood when it's not fighting gravity, so reclining is actually helpful for circulatory problems. People with severe pain need to work on spending enough time in bed.

I found this site very helpful:
http://painaid.painfoundation.org/

It's not lyme-specific, but I found people there who understood and were helpful to me in seeking out better pain management.

I've just switched to a new pain medication. Bumpy ride but I've already had more sleep in the last few nights than the last few weeks. You just know all that sleep makes the borrelia worry. 'Oh no, our Host Exhaustion Program is failing!!!!'

I have bad experiences with opiate drugs giving me nausea or muscle spasms. Though that didn't used to be true, so something has changed in my body also same for marijuana actually.

xanax seems to help a lot with the nerve pain. It doesn't make it go away but it's more tolerable.

neurotin had severe side effects including causing suicidal thoughts (and yeah it really was just the neurontin! scary!)

pain control has mostly eluded me as nothing seems to help much without causing side effect that are worse than the pain itself.

Breathing and meditation have seemed to be my best bets. But this is definately multilayered and hard to address issues.
I tried a pain specialist but he seemed just to have his formula and gave me 8 drugs to try at once which seems to me like a bad idea (how could you tell what works if you're taking all new drugs? or conversely tell what is causing problems?)