People who are suffering with chronic pain don't really want a lot of information; they mostly just want to feel better. They just want the pain to decrease so they can get back to their lives. But unfortunately it's often necessary to learn more about pain and pain treatments to be able to get better. That's because many times they haven’t gotten much relief. We don't really have all the answers, and we are still trying to figure out how pain works.
That may surprise you, but when you look at the statistics on pain then it starts to make more sense. According to the American Chronic Pain Association, there are at least 60 million Americans living with persistent pain in their lives. One in four American families are affected by someone with chronic pain, and pain disables more people than cancer and heart disease put together. So if we were doing such a great job with understanding and treating pain, then why would there be so many people suffering? The answer is that we haven't been doing such a great job with pain. But why is this?
Well, for one thing, we don’t learn much about pain in medical school. That’s sort of understandable, because we tend to focus on things that kill you or make you really sick, and chronic pain just hurts. So it’s been a bit neglected in our training, and our focus in treating patients.
But also we've gotten a lot of things wrong about pain in the past. Many things that we thought were true turned out not to be true. So if I can tell you about some of the things that we got wrong, it may help you to understand pain better yourself.
How it works
We used to think that if a person felt a lot of pain then there had to be something terribly wrong with the area of the body that hurt. This is true for new injuries and accidents, but it's not so true for chronic pain. We used to think that the pain you felt was a perfect representation of tissue damage or illness in the painful body part. Now we understand that pain can take on a life of its own in the nervous system and in the brain. The nerve cells can literally just turn up the volume on pain, even after the body tissues have healed.
Most patients don’t believe this. They think that the “right” doctor just hasn’t found the “source” of their pain yet (the disease that’s really there in the area that hurts, that nobody has found). They must find the “right” doctor to “fixed” it. They go from doctor to doctor, trying to find that “right” doctor who will find the hidden condition causing the pain.
Rarely, there is some underlying “hidden” condition that doctors have missed, but most of the time there is not. It’s just the nerves that have amplified and spread out the old pain signal, keeping it pumped up all by itself.
We started to learn in the 1960s that pain signals could be modified quite a bit as they travel up to the brain. We learned that there were "pain gates" in the spinal cord, and we learned how these gates might be opened and closed, to let more or less pain through. More recently, we have learned about a variety of different chemical messengers in the brain and spinal cord that can significantly alter our perception of pain, called neurotransmitters. External compounds, such as morphine, marijuana, and various medications can mimic these naturally occurring chemical messengers to modify pain. And just in the last few years we have learned that there are powerful pain braking systems in the upper brainstem; centers in the brain that can quiet down pain signals. These braking centers may also malfunction in certain pain conditions.
Just 15 or 20 years ago, if the doctors and surgeons couldn't find something clearly wrong with you when you were experiencing persisting pain, then you were a psychiatric case. And there is still a lot of this sort of thinking lingering around. Now we understand that people who are experiencing chronic pain will also commonly have significant anxiety and depression along with it. This emotional fall out from the pain doesn't usually cause the pain by itself, though it can certainly make it worse.
Most of us have heard that old joke about the guy with the headache - if you stomp on his foot, he won't feel his headache so much. But now we know that this isn't really a joke anymore. If you can effectively distract someone with something that fully captures his attention, his pain experience is significantly reduced. It isn't just that he isn’t thinking about his pain as much, it's that the actual amount of pain signal that gets into the brain is dramatically cut back. This is the reason a really exciting movie or beautiful music can make you feel less pain. We really didn't know this before a couple of years ago.
What to do
In dealing with the medical system as a pain sufferer, there are some things that you should understand. And if you can look at pain treatment from the doctor’s point of view, it might make your journey a bit easier.
Most doctors see chronic pain patients as perhaps the toughest group of patients out there. Why is this? It’s because pain patients are perceived as a group of people who complain a lot (naturally), and for whom we doctors can’t really do too much. We have limited tools and training, and so many doctors get frustrated. But it’s not your fault.
We have about five major classes of drugs to treat pain, and the best class is probably the opioid (morphine) group, originally from the opium poppy. The others include the non-steroidal anti-inflammatory (aspirin/ibuprofen) class, the tricyclic anti-depressants, the anti-epileptics, and the topical (on the skin) class. Each one of these drug classes has its benefits and its drawbacks, and often we prescribe them in combinations. One of the big problems is that all of these drugs and classes can cause side effects and adverse reactions. And many of these medications may not work for you.
Some of the best advice I can give you is to do your homework. Yes, you have to write down every medication you have ever tried for your pain, what the dosages were, how long you took it, and what your responses to each medication were.
You see, a good pain doc needs to know if you’ve had an adequate trial. If you didn’t get a good trial of a medication, then we still don’t know if that medicine might help you or not. Maybe they gave you too little or too much, or they didn’t leave you on it for long enough. I have many times gone back and found a useful drug that wasn’t given a decent trial, and we’ve tried it again, and found that it was actually helpful.
You should also write down all your trials of non-drug therapies as well, like injections, physical therapy, acupuncture, psychotherapy, massage, relaxation routines, hypnosis – whatever you have tried, so that your doctor can trouble-shoot each trial for adequacy. You have to write down the details – for example, there are 4 or 5 different kinds of injections, and we need to know what kind you had to be able to move forward.
Most pain patients really need a multidisciplinary approach - they need some doctors, nurses, and therapists, and psychologists to help support them, and maybe a few other professionals as well. But most people don’t get this, because it’s way too expensive. Mostly health insurance will just pay for pills, shots and maybe surgery, and that’s a shame.
So when you are dealing with the medical delivery system, you need to be a positive, assertive (but not aggressive) advocate for your own care - get the doctors to go over everything that you have already tried, and make sure that your questions are answered. You should not settle for just getting multiple injections, or more and more pills, just because that’s all that the health insurance will pay for.
The other thing that many people with chronic pain are trying is therapies outside of regular medicine – things like relaxation and meditation, acupuncture, massage, herbal medicines and dietary supplements, spinal manipulation, energy treatments, aromatherapy, etc. Some of these therapies have some pretty good science indicating that they may be helpful, and many do not have any research at all. But we should remember that just because something has not been studied does not necessarily mean it’s useless (or that it works!).
Many chronic pain patients have been tried on a few pills and shots, and then they are told “there’s nothing more that can be done”. This is almost never true. There is a whole array of options out there – you just need doctors who are willing to explore them with you.
People often think that it’s an “either/or” proposition – that they are just going to stick with the “real doctors”, or that they are going to “go the alternative route”. I think this is a false idea, particularly with pain. There’s no reason not to use appropriate medications and physical therapy, and also learn to meditate to quiet down your mind and help relieve some of the suffering. It can make a real difference. Or get a massage or some acupuncture treatments. There’s no conflict here. We call this “integrative medicine” for pain, and there are a certain number of us pain specialists who can help guide you in these combinations. They can be quite helpful.
This approach to pain is not just my fancy idea. It is also endorsed by the agency that accredits all 18,000 hospitals in the United States, the Joint Commission on Accreditation of Healthcare Organizations (JCAHO). In their Implementation Guidelines for Pain 3.1, they specifically cite a number of these “complementary and alternative” therapies that may be helpful for the treatment of pain. They may not all be helpful for you, but some might be.
Outside of the regular medical system, there are scores of wonderful non-medical practitioners helping people every day. This would include massage therapists, acupuncturists, chiropractors, yoga teachers, energy healers of various types, Pilates instructors, etc. Some of these practitioners are a bit “far out”, and some may be trying to sell you on therapies or products that are pretty wacky, but most are solid, responsible, and often quite helpful practitioners who will be willing to work with your doctors to create an “integrative” plan for your pain care. Communication will be the key element for success.