Treating the pain in CFIDS
Effective pain relief is hard to get
By Alan Spanos, MD, MA

Poor pain treatment
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 can’t 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.

What causes the pain?
We don’t 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 PWCs’ 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 anesthesiologists 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 can’t 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 physical rehabilitation, 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 can’t 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 with CFIDS.

Does it follow that PWCs have nothing to gain by seeing a pain specialist? Usually, that’s 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 can’t, 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 pain treatments 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 doctors’ 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" — 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.

This view on the non-addictive nature of medically prescribed opioids 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 doctors’ specialty training in pain.

What opioids do cause is physical dependence. This sounds terrible, but it isn’t. 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 pain will go away? Unfortunately it’s not so simple. For one thing, opioids sometimes work and sometimes don’t 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
Physical therapists, massage 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 won’t 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, it’s reasonable to try it yourself.

With both physical and psychological approaches, remember that practitioners 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 before.

Last but by no means least, PWCs should try the various massage gadgets 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
Pain specialists make 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 it’s 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 can’t 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 pain at Blue Ridge Clinical Associates in Chapel Hill, N.C.