TO TABLE OF CONTENTS
Treating the pain
Effective pain relief is hard to
Alan Spanos, MD, MA
Headaches and pains in
muscles and joints
are all too familiar to people with CFIDS (PWCs). For some, the pain is the worst part of the illness
- more demoralizing than the fatigue, the difficulties with memory and thinking or the frequent,
debilitating infections. Yet pain in CFIDS is typically not treated well. Indeed, it is commonly not treated
at all. In this article, Iíll try to explain why this is so, and Iíll suggest what PWCs can do to get
better relief from pain.
There are six reasons why PWCs have difficulty getting good pain treatment:
- Pain is treated poorly in this country. Period.
- We donít know what causes the pain in CFIDS, and we canít measure its severity, so weíre
unsure how to treat it.
- Pain specialists are few and far between, and virtually none of them is interested in
- Treatments for pain in CFIDS often donít work, so itís easy for doctors to get discouraged
and not even try them.
- Most doctors withhold the best pain medicines from PWCs out of a groundless fear that
they will cause addiction.
- Non-drug treatments are hit-or-miss in CFIDS, so itís easy to get sucked into expensive
but worthless treatment attempts.
Letís look at each of these in turn.
Many medical studies have shown that doctors routinely underestimate
the severity of pain, and therefore undertreat it. This is so even of patients recovering from surgical
operations in hospital, and for those with terminal cancer. It is largely because of this that there has
been a move towards letting people in hospitals administer their own pain medicines after surgery, using
programmable electric pumps attached to intravenous lines. Studies have shown that when the patients themselves
can control their pain medicines, they get better pain control with less pain medicine than if the drugs
are given on a fixed schedule.
The trouble is, there has been no similar move to
allow control over
pain treatment to people outside hospitals. Doctors are naturally fearful that people in pain, getting
desperate and demoralized, could overdose themselves dangerously if allowed to take whatever doses of
pain medicines they needed. In the hospital, the gadget that delivers the drugs can be set to give an
amount that never exceeds a safe dose. Obviously one canít do this with a pill bottle on a bathroom shelf.
Hence doctors are quite stern in their instructions on how to take pain medicines. And they typically
underestimate the dose required. Very few doctors have had any training at all in the wide range of doses
of pain medicines that are needed for different conditions, and they tend to stick with prescriptions
at the lowest end of the dose range, for safety.
know what is hurting in CFIDS. There is no shortage of engaging theories, from dysfunctional nerve terminals
in the muscles, to disordered chemistry in the brain. We have plenty of speculations about what may
be causing the pain, but no knowledge at all about whether these processes are actually going on.
It follows that we have no objective markers of pain, or relief from pain. This means that doctors have
to base PWCsí pain treatments entirely on their "subjective" reports of how they are doing. And this makes
doctors very uncomfortable.
Will a pain specialist help?
There are not nearly enough pain specialists, so they are
overloaded. Most are
who do pain treatment as a diversion from the operating room. They are mainly interested in procedures
like injections to deaden nerves causing pain or implanting gadgets into the spinal cord to interrupt
pain transmission. Such procedures sometimes help localized pain but are of no value for the
headaches or the widespread muscle and joint pains of CFIDS.
Anesthesiologists generally do not
have the time, the interest or
the knowledge to treat patients over long periods of time. Another brand of pain specialist is the psychiatrist
(an MD specializing in mental illness, not to be confused with a psychologist, who also specializes in
mental problems but is not an MD and therefore canít prescribe medications). The psychiatrist tends to
see chronic pain as a manifestation of mental illness. Some mental illnesses do indeed cause physical
pain. But the attitude that chronic pain is essentially a psychiatric disorder is wrong. When
it is suggested to patients that they may have a sort of character flaw, they are unlikely to remain for
treatments in a program where they feel demeaned like this.
A third type of pain specialist is oriented towards
such as supervised bodybuilding in a gym with classes on how to do heavy tasks in the most efficient way.
A slight caricature of this approach is that it admonishes patients with pain to "quit whining and get
on with your push-ups." This is exactly what some people with pain need, but is no good at all for PWCs.
They promptly get much worse with such a program and then feel stigmatized as complainers when they tell
the therapists that they canít go on. For a PWC to be referred to such a program is a serious medical
blunder but one which happens rather often, typically before the patient has been correctly diagnosed
Does it follow that PWCs have nothing to gain by seeing
a pain specialist?
Usually, thatís true. I recommend that if you do seek an appointment with a pain specialist, be quite
cautious in your expectations and try to find out three things about him or her beforehand. Ideally, talk
with the doctor. If you canít, then at least ask to talk with the senior nurse at the clinic. If you can
find people who have been treated there, they will be very useful sources of information, too.
The first thing to find out is whether the doctor
cares for patients
over long periods. If so, there is at least a chance that he or she has an interest in careful, long-term
management of medications, a must for PWCs. Second, does the doctor work closely with physical therapists
and psychologists who are right there in the clinic? If this question provokes a long pause, then beware:
the clinic is probably much too restricted in the treatments it offers. Third, is the doctor familiar
with CFIDS? Again, a long pause after this question is a rather strong argument against making an appointment!
Treatment can make you worse
A major impediment to good pain treatment for PWCs is that
several of the standard
can actually make the condition worse. The most obvious example is physical exercise, which is the mainstay
of many pain clinics. But this is also true of medications. Drugs for pain often cause lethargy and mental
fuzziness. They may also cause emotional instability. So when these symptoms are getting worse for a PWC
trying out a pain medication, it is very hard to sort out the cause: is it a relapse of CFIDS or a side
effect of the drugs? Side effects often reduce with time, so we encourage people to stay on the medications
to see if they improve. But how long should PWCs stay on medications that may be making them sicker? There
are no easy answers to these questions, and it is not surprising that doctorsí persistence flags in the
face of such uncertainties. Hence many patients are simply told that there is no treatment for their pain.
The individual PWC needs to decide if he or she wants
to find out
if any medicines for pain can help. If so, this may mean trying several different drugs in several different
categories. Some PWCs do seem to get benefit from tricyclic antidepressants, muscle relaxants, acetaminophen
(Tylenol), nonsteroidals such as ibuprofen (Advil), and opioids, which merit a separate section below.
To try each of these is quite a time-consuming chore. The patient must usually keep written records of
responses over many weeks, trying one medicine after another at varying doses, to determine clearly what
helps and what does not. Few patients and fewer doctors are interested in doing this. Even when both commit
to such an exploration, enthusiasm naturally wanes in the face of unpleasant side effects from drugs that
are not helping.
Best medicines are rarely used
Our strongest, and safest, pain medicines are the opioids,
which are related to
morphine. I like
to remind my patients that morphine, despite its fearsome reputation, is actually an extract of a rather
beautiful poppy. We get these medicines from nature and they work precisely because they are so "natural"
ó that is, they mimic similar chemicals that our own nervous system uses to control pain. But they are
also used by drug addicts. This fact has obscured for decades the fact that they are both powerful and
remarkably safe. Despite what all doctors and pharmacists have been taught, opiods virtually never
cause addiction when used properly for the treatment of pain. Addiction is an uncontrolled, compulsive
use of a drug even though it is doing the user harm. This is virtually never caused by the medical
use of opioids. In 23 years of practice, I have never seen a case, nor seen one described in the medical
literature. In a survey of 10,000 patients treated with prolonged opioids for extensive burns, not a single
case of addiction resulted. Other studies have given similar results. And addiction is not even mentioned
as a possible side effect of the medical uses of opioids in the standard publication on pain treatment
by the federal government.
The five opioids listed above come in tablet form and are suitable
for long term use. Unless a specific reason exists for avoiding one (for instance, a prior adverse reaction
to it), then each of these should be tried in succession, to establish which offers the best mix of benefits
versus side effects. Each one is marketed under several brand names.
This view on the non-addictive nature of medically
is now firmly established. It is the orthodox teaching of bodies such as the American Pain Society (the
professional organization of pain specialists) and the American Academy of Pain Medicine, which supervises
doctorsí specialty training in pain.
What opioids do cause is physical dependence. This
but it isnít. It simply refers to the fact that if opioids are suddenly stopped the patient will get a
brief withdrawal syndrome, which feels like a case of flu. It lasts only a few days, is not medically
dangerous and never requires treatment in hospital. If opioids are tapered down gradually, it does not
happen at all.
Does this mean that PWCs should take opioids and their
go away? Unfortunately itís not so simple. For one thing, opioids sometimes work and sometimes donít work
for pain in CFIDS. For another, there is much variation in individual response from one opioid to another.
So it is necessary to try several different opioids, each with a variety of dosages, in order to do a
proper trial of opioids. In the best cases, the results are twofold: not only does the pain reduce substantially,
but also energy improves and relapses of fatigue after exertion are much briefer and milder than before
opioid treatment. In some patients in my experience, these results are dramatic and seem to persist indefinitely.
I should stress that we have no information on how common these very gratifying responses are. But in
my opinion, the fact that they happen at all is reason enough to offer a trial of opioids to any PWC for
whom pain is a major problem.
Non-drug treatments in CFIDS
therapists, chiropractors, acupuncturists, Rolfers, psychotherapists, hypnotherapists and various other
practitioners are very keen to treat CFIDS. But no good studies have established the value of any of their
offerings for PWCs.
The very limited studies done by physical therapists
serve only to
confirm what PWCs already know: that they feel ill and hurt all over if they attempt vigorous exercise
but that carefully controlled exercise is a must to avoid a downward spiral of weakness, stiffness
and further pain.
Given the current lack of scientific information on
the value of
such treatments, I can only offer PWCs some suggestions based on my own experience. I have been impressed
that the best practitioners among physical therapists, massage therapists and chiropractors get
results very quickly. I therefore advise patients to avoid practitioners who want them to sign up for
10 or 20 treatments. A more credible practitioner is one who suggests doing 2-3 treatments and proceeding
with more only if these were clearly helpful.
As for psychological techniques, studies suggest some
PWCs may be
helped by cognitive therapy, which aims to reprogram negative thinking and by training in the use of guided
imagery. The problem with the psychological approaches is that they tend to be time-consuming, expensive
and only help an uncertain proportion of PWCs. We are completely unable to identify who will and who wonít
benefit. Unlike the physical treatments, they may genuinely require 10 or more sessions before they bear
any fruit at all. My advice is therefore to check whether the practitioner has treated PWCs before and,
if so, to get permission to contact them. If they benefited from the treatment, itís reasonable to try
With both physical and psychological approaches, remember
vary enormously in what they actually do and how good they are at it. Do not assume that because you had
biofeedback five years ago and it did not work that you could not be helped by an outstanding practitioner
today: he or she may be doing something that only barely resembles the treatment that did not help you
Last but by no means least, PWCs should try the various
and similar devices now on the market. These have improved enormously over the last few years. They vary
from small rolling devices to run over sore muscles, to electric massagers that can do a surprisingly
good job of simulating specialized massage styles such as Shiatsu. Like the other physical treatments,
these are hit-and-miss: they can be a godsend, they can do nothing or they can make you worse. But they
have two big advantages: first, if they do work they are always available to you, right there in your
own home; second, you can try them out before buying them. So my advice on home massage gadgets is simple:
try out as many as you can get your hands on, so long as they come with an ironclad return policy!
Suffering is more than pain
a distinction between pain itself, which is an unpleasant sensation, and suffering, which is
the experience resulting from it. Pain makes you suffer not only because itís pain, but also
because it makes you scared, isolated, frustrated and demoralized. Pain grinds you down. All this adds
to the experience of suffering due to the pain. I think of pain as a cassette in a stereo with your least
favorite music on it. Suffering is what happens when this music that you hate goes through the
amplifier with the volume turned full on. Panic, isolation, frustration and demoralization are what turn
up the "suffering knob." The point is that even if you canít change the tape, you may be able to turn
down the suffering knob. For many, the rituals and the fellowship of religion do this. And we all have
more mundane ways of turning down suffering: taking a break, eating comfort foods, talking with a friend,
watching a favorite TV show, sharing a joke, reading a book, singing along to the radio, stroking a pet--the
list goes on. These can be as powerful as the strongest pain medicines.
Dr. Spanos specializes in the treatment of chronic
at Blue Ridge Clinical Associates in Chapel Hill,