My brother has had chronic back pain ever since a garage door fell on his head at a construction site. After trying everything, he has given up and seems deeply depressed. The doctor says he qualifies for disability and that his pain is a disease. What makes pain a disease? What does that mean?

Pain that occurs after major trauma like the head injury your sustained that lasts indefinitely is labeled chronic. This type of pain has been the focus of neuroimaging studies for the last two decades. Neuroimaging has opened our eyes to the changes in the brain that accompany chronic pain. Changes that affect the anatomy, biochemistry, and neurochemistry of the nervous system.

These techniques have made it possible to study the brains of patients with chronic pain compared to individuals without pain. Measuring density of brain tissue, connections between brain structures, brain biochemistry, and location and type of neurotransmitters and their receptors has helped explain more about central pain processing. Central pain processing refers to how pain is processed in the central nervous system (brain and spinal cord).

Clearly the brain is altered in patients with chronic pain. It’s these measurable physiologic changes that define chronic pain as a disease rather than a syndrome. The medical definition of disease is any disorder of structure or function in a human, animal, or plant; especially one that produces specific symptoms. A syndrome is more of a collection of signs and symptoms not always with an identifiable organic cause.

With observable changes in the brain, it makes sense to think that the disordered brain function could be considered a disease. But there are other experts who disagree because it’s not always clear which came first: the pain or the brain changes? Scientists are focused now on unraveling this question with the hope of finding more effective (and permanently successful) ways to treat people like your brother who suffers from a chronic pain condition with no end in sight and poor quality of life as a result.

I am a chronic back pain sufferer as a result of a simple surgery I had done four years ago. I keep watching the news for any miracle cures. So far: nothing. But I did hear a news report that they have shown there is altered brain function in people like me and maybe this will be a breakthrough in research. What sort of help would that bring me?

Over the past twenty years or so, scientists have been able to take a different research approach to the problem of chronic pain. Using studies like Positron Emission Tomography known as PET scans and Functional Magnetic Resonance Imaging (fMRI), magnetoencephalography (MEG) and the more traditional electroencephalgraphy (EEG) has changed how chronic pain is viewed. With visible and measurable changes in the brain now documented, chronic pain fits the medical definition of disease.

But does this change in how we view chronic pain (as a disease state) change anything? Not yet, but maybe it will change the way we treat chronic pain patients and hopefully so in the very near future. Armed with this new information, scientists are changing their focus of study. Now, they are looking at groups of patients with the same problem (e.g., fibromyalgia, irritable bowel syndrome, depression, arthritis, back pain) and examining what’s going on in the brain associated with these conditions.

They are finding that common disturbances are present in the brains of people who have the same disorder. For example, patients with knee osteoarthritis have increased brain activity in three areas: the amygdala (survival center), thalamus (relays sensation and motor signals to the main part of the brain), and cingulate cortex (emotion processing and formation). It may be possible to find ways to shift brain activity or change the pain experience through direct brain stimulation. If there are people with a particular pattern of biochemistry more likely to anticipate pain or amplify pain, there may be ways to alter the body chemistry to change their response to pain.

The bottom line is that chronic pain is linked with structural changes and altered neurochemistry in the brain. This information alone gives a focus and direction for research that may ultimately result in changes not only in the way we view chronic pain, but also in finding more effective ways to treat it centrally (at the brain level). The results of these neuroimaging studies also open the door for changes in treatment for other chronic nervous system-related problems that are currently considered irreversible such as Parkinson disease, post-stroke, and drug addiction (narcotics).

Since back pain makes up a large portion of the adult population with chronic pain, this problem will remain a major focus of many pain researchers. Scientists who are pursuing this new approach to understanding and treating chronic pain may even find a cure, not just better ways to manage chronic pain.

When my sister was diagnosed with complex regional pain syndrome, her doctor called it something else – reflex sympathetic dystrophy syndrome. Does it have two names and what are its symptoms?

Complex regional pain syndrome, usually called CRPS, used to be called reflex sympathetic dystrophy (RSD). Doctors began using CRPS when they found it was a more accurate way of describing the syndrome.

The symptoms of complex regional pain syndrome include:
– a burning pain in the affected area
– skin sensitivity beyond what you would normally expect
– changes in skin temperature, color, or texture of the affected area, different from the other limb
– shiny or sweaty skin
– swelling in affected joints
– stiffness in affected joints
– difficult moving the affected body part

When I get stressed, I get very nauseated and may throw up. My doctor says it’s in my head, but it seems very real to me. I don’t do it on purpose. Is it really all in my head?

Without a thorough examination, it wouldn’t be possible to say if your nausea is physical or “in your head,” but either way, that doesn’t mean that your nausea isn’t real. Stress and other factors can make our body believe that it is ill or in pain; it’s part of the overall reaction.

If you feel that your stress is causing your nausea, the best thing would be to try to limit the stress or at least to identify the stress triggers that may set off the nausea. Meeting with a counselor or psychologist could be one way to learn how to identify these issues.

I’ve heard about somatic pain, which is pain that is really in your head but you feel it in your body. How do you deal with that?

Somatic pain isn’t really pain that is in your head, although that is an easy way to look at it. Somatic pain is a process of a mental or emotional feeling or stress that becomes a physical feeling. The feeling is very real to the person and the brain is interpreting it as very real.

Treatment of somatic pain varies, depending on the person and the cause of the pain. Psychological counseling and medication may help one person, while stress reduction may help another. There are various techniques that have been developed as well, such as mirror therapy for people who have lost an arm.

If someone who has lost a hand or arm is feeling pain from the muscle contractions, they may feel relief by seeing their whole arm mirrored to make it look like they have their two arms again. By clenching their remaining hand or moving it around, and then imagining they’re doing that with their missing hand, they may feel relief from the pain. This is an example of how the brain may work at relieving pain.

Here’s an odd one for you. My mom had shingles and has lots of pain still. Her doctor prescribed Neurontin. I have fibromyalgia and muscle pain that can make it impossible to move. My doctor also prescribed Neurontin. But we have two different kinds of pain. Then, I read that it’s really a drug for epilepsy. What is going on?

When medications are first developed, they are usually developed to treat a specific issue. Once the medication is approved for use for that issue, doctors and researchers sometimes notice that other problems may improve when they prescribe the medication to their patients. For example, if a patient is taking a medication like Neurontin (gabapentin) for seizures, but he also had shingles that left behind post herpetic neuralgia, nerve pain, he may find that the medication not only is controlling his seizures, but is controlling the pain. Sometimes the discovery is intentional, sometimes it’s accidental, but when doctors find a different use for a medication, they may be tempted to try it since it is already available.

Somewhere along the line, researchers and doctors discovered that gabapentin not only treats seizures, but it helps manage the nerve pain from shingles and may also help the pain from fibromylagia.

I have chronic pain in my back that no-one has been able to diagnose. I know some doctors say it’s in my head, particularly because it hurts more when I’m stressed. What can I do?

Living with chronic pain can be difficult, particularly if you don’t know the cause. You don’t say what types of doctors you’ve seen but it may be worth your while to see a pain specialist. Most pain specialists are anesthesiologists, doctors who specialize in relieving pain.

Even if a specific cause can’t be found, the pain has to be dealt with and a pain specialist may have some ideas that haven’t been tried yet. At the same time, if your pain is made worse during stressful periods, it may be a good idea to try working with a counselor or psychologist to learn how to lessen your stress reactions. If you can get a handle on this, your pain may also decrease.

How do doctors decide if a pain is real or imaginary if there’s no proof, like a broken bone, or something?

Pain is a very individual experience and while some people are able to cope with intense pain, others have difficulty coping with what some may consider to be mild pain. Add to this that pain is not always caused by a specific thing, such as a broken bone, a cut in the skin, or a mass in the body and you will see that pain is very complex.

If a patient sees a doctor for pain that can’t be tracked down to an obvious cause, the doctor must investigate further to see if an illness may be the problem. Some illnesses, such as fibromyalgia, cause pain but it can’t be pinpointed such as a broken bone.

Imaginary pain is not necessarily not real. If a person is experiencing emotional pain that is coming out as physical pain, their experience must still be acknowledged and dealt with, although treatment may not be with pain relievers.

I took an on-line survey that was supposed to help a well-known pain clinic understand my pain and help design a special pain management program just for me. The test took all of 90 seconds. How can they possibly have enough information to know what I need?

That’s a good and very valid question. Pain is a difficult thing to measure. There’s no lab test that can put it into an absolute number like a white blood cell count. Yet with 50 million chronic pain sufferers in the United States alone, there’s got to be a better way to measure pain than the visual analog scale (VAS). Using this scale, patients assign a number from zero to 10 to rate their pain (zero is no pain, 10 is the worst pain). This is so subjective, even the patients can’t tell if a rating of three today is better or worse than yesterday’s three.

Efforts are being made by pain researchers to develop an interactive, intuitive computer program that will help quantify (put into numbers) variable describing and defining pain (e.g., location, intensity, duration). There is also a need for some kind of chronic pain assessment tool that can measure improvement in pain levels. Being able to measure improvement would help researchers identify which treatment approaches are working best.

Researchers from the National Research Centre for the Working Environment have teamed up with the QualityMetric Incorporated company to develop a computerized prototype of an adaptive test for chronic pain. The computer program was set up so that the computer chose the next question for each person taking the survey based on the answer given to the first question. The program allowed the computer to select the next question to ask each person depending on the answer (and score) for the previous question. The first question was always, How much pain have you had during the past four weeks?

A study using this method showed that by using a computerized adaptive program (i.e., one that responded based on the answer given to the previous question), it is possible to conduct a complete pain assessment in 90 seconds using between two and seven questions. When compared with answers given to the full 45-item survey, the information gathered was the same! This type of tool with a short survey length helps reduce the burden placed on patients who are already in pain.

If the survey you took was based on the evidence presented by this research group from the National Research Centre for the Working Environment in Copenhagen, Denmark then you can be rest assured that the tool is valid and accurate. They will be doing further studies to make sure the results are reliable when using the survey with a wide range of people. If you have the contact information for the center performing the assessment on you, you might want to pose this question as you presented it to us and find out more about the source and validity of the materials they are using.

My doctor gave me a series of questions to answer to help her identify the source of my pain. The questionnaire was called the McGill Pain Questionnaire. Afterwards, she sat down with me and explained how some of my pain is worse than it seems because of certain emotions like fear and anger. I tend to agree with her but how does a simple set of questions like this give that kind of information? I don’t remember any questions about how I feel.

The McGill Pain Questionnaire, also known as McGill pain index, is a scale of rating pain developed at the McGill University in Montreal, Canada. It was shown to be a valid and reliable tool to investigate pain and has been in use since 1971. There are many subsections to the questionnaire to help the examiner or health care professional get to the bottom of what hurts, how much it hurts, and potentially, why it hurts.

To use the basic questionnaire, the patient circles the words that best describe his or her pain. There are 20 groups of words to choose from with choices like throbbing, shooting, scalding, and dull or sore. The first category includes words that describe pain of a vascular (blood vessel) nature. For example, if you have a throbbing or pounding headache, it may be coming from too much blood in the brain.

The second set of word descriptors form seven of the categories and describe neurogenic (nerve pain). Words like tingling, itching, hot, or burning suggest a neurogenic source of pain. One section is devoted to musculoskeletal pain including words like dull, aching, sore, or heavy.

That leaves 10 full categories of words that suggest an emotional response to pain. It doesn’t mean you don’t have pain. It just means the interpretation of the pain (especially pain intensity) is influenced by certain emotions. Some of the words in this category are fearful, sickening, tiring-exhausting, or punishing-cruel. You might describe your pain as miserable, torturing, or unbearable. Again, these words suggest what is referred to as an affective (emotional) base.

The mind-body connection is a powerful link in any kind of chronic pain condition. Having this information can be very helpful in planning a treatment approach that will give you the best results. The McGill Pain Questionnaire is just one of many tools that can be used to uncover underlying emotions, thoughts, and beliefs that are tied into our pain and dis-ease.

What is nonneuropathic pain? That’s what the doctor says I have. Even though it’s been explained to me, I just can’t remember what it is and I don’t want to have to ask again. It would be the third time I’ve forgotten and asked. Maybe if I see it in writing, it will stick with me.

Very simply, nonneuropathic pain is pain that is NOT coming from damaged or irritated nerves. Neuropathic pain — neuro for nerve and pathic suggest something IS pathologic or wrong with the nerve.

The symptoms from neuropathic pain are different than nonneuropathic pain. When the nerves are compressed, pulled, or irritated, patients report pain, tenderness to touch (or even exquisite pain with touch), numbness, and tingling. Sometimes words to describe temperature point to a neurogenic source: hot, cold, burning, scalding, searing. Neuropathic pain is common when people have peripheral neuropathies from diabetes. Peripheral neuropathy is a condition of nerve damage or irritation of the nerves to the hands and feet. Pain numbness and tingling are the main symptoms of this condition.

Nonneurogenic pain is more likely to affect the muscles, bones, ligaments, and other connective tissue. Words used to describe nonneuropathic pain are usually what you would say about muscle pain: it’s sore, aching, or feels heavy. Some examples of nonneuropathic pain problems are fibromyalgia, migraine headaches, and low back pain.

Many people have a combination of both types of pain, which makes it difficult to sort out what is coming from each type of tissue. Determining the type and source of your pain is very helpful in planning the best treatment possible. It sounds like your physician is already tuned into that for you.

I need a spinal stimulator for pain control. Would it be cheaper to go to Canada and get it? I’ve heard the cost of health care there is much less than in the U.S.

Spinal cord stimulation (SCS), also called neurostimulation are used to help relieve chronic neuropathic (nerve) pain. A stimulator is implanted into the patient’s body, which then sends out impulses to interrupt the pain signals and prevent them from reaching the brain.

The electrical impulses from the stimulator override or mask the pain messages so the person doesn’t feel the pain so acutely or so intensely. SCS is generally only used if nothing else in treatment has been successful in reducing or eliminating intense, chronic pain.

It must be done on a trial basis first before the stimulator is permanently implanted. There is a cost involved in the trial as well as the permanent implantation if the trial goes well. The trial stimulation involves consultation with a psychiatrist, social worker, neurosurgeon, neurologist, orthopedic surgeon, neuromodulation nurse, and the family or primary care physician who coordinates it all.

ST scans, X-rays, and MRIs are taken in preparation of the implantation. In addition to those costs, the cost of surgery includes the anesthesia, neurosurgical team fees, and the device itself. The stimulator has electrodes and batteries that must be maintained, repaired, and/or replaced each year. Follow-up visits, follow-up imaging, and care for any complications (broken wires, infections, failed pain control) must be added to the overall total costs.

So, it is a good idea to consider the total annual costs — not just for the implantation, but for the life of the unit and the long-term use needed for pain control. Whether or not it’s cheaper to have it done in Canada is another factor to consider. It may depend on whether or not you have any medical coverage to help you out.

If you are covered under a third party payer, will they cover expenses incurred in another country? Will they help you with travel costs to get to and from Canada? Who will do the follow-up care? If you go to Canada for that, then you must calculate the additional costs to and from Canada as well as the cost of food and lodging while there.

There’s no reason not to investigate this fully. But beware of the hidden costs and need for close follow-up for many years to come. What might look like a cost advantage in another country may end up a liability when you look at the big picture.

Do you know of anyone who has ever been cured from complex regional pain syndrome? I noticed when I went on vacation to Hawaii my symptoms were much much better. Maybe a condo in Honolulu is really all the cure I need. But seriously, what can you tell me about the cure rate?

Every illness, disease, or medical condition has what we call a natural history. The natural history describes what typically happens for that patient with a particular problem. Natural history may include how quickly the disease advances or progresses. It also includes what signs and symptoms develop at each stage. Prognosis and what to expect at different time points of disease are also part of the natural history.

The natural history of complex regional pain syndrome (CRPS) is not usually one of complete recovery or cure. Research shows that CRPS comes with a wide range of symptoms that are present early on (during the first five years) and tend to get worse over time.

There are some things that can help improve symptoms. For example, many patients benefit from medications, rest, and warm temperatures (e.g., hot weather, hot or warm water). Massage, elevation of the limb, and physical therapy are also helpful for some patients. Avoiding aggravating factors (that is to say, things that could be counted on to make the symptoms worse) is the other side of the coin.

Aggravating factors include cold, physical activity, and some specific motions. Standing still too long, holding the arms up overhead, being in a car (as driver or passenger) for a long time, and stress are reported by patients as contributing to more intense pain.

Management of symptoms is really the key to treatment. By helping alleviate pain, muscle spasm, and weakness, patients can become more functional with fewer limitations in their everyday activities or work life. Scientists hope for a cure but we don’t have one yet.

Is it true that more women than men get complex regional pain syndrome after an injury? That’s what my doctor told me. I don’t know why but I don’t really want to believe it. It makes me feel somehow kind of inferior as a woman. There’s got to be more to it than that.

Complex regional pain syndrome or CRPS is a painful condition that affects the arm and hand or leg and foot. It usually occurs after trauma of some sort, including car accidents, falls, assault, lifting heavy objects, and surgery.

Complex regional pain syndrome (CRPS) comes with a wide range of symptoms. Most people report a cutting, sharp, or stabbing pain. It’s intense and it’s constant. They may also notice increased or decreased sweating of the area. Hair patches or hair loss (or both) are common. Muscle spasm and weakness are part of the clinical picture early on for most patients.

Some patients’ have a change in temperature, too. The limb may become very hot and sweaty or cold and clammy. It’s not entirely clear what causes this condition or its symptoms. It looks like changes in both the central (brain and spinal cord) and peripheral nervous systems (spinal nerves) are part of the process. Interactions between the nervous system and the immune system may be equally important.

All of these changes probably contribute to the symptoms described with CRPS. Most people think the syndrome occurs after healing is complete. But one theory is that there is ongoing inflammation. The inflammation causes nerve endings to become extra sensitive.

Women are more likely to develop CRPS compared to men, so there may be a neurohormonal factor as well. The interaction between the nervous system and hormones is complex and not well understood. Any number of problems in communication between these two systems could set off a chain reaction that ends in developing CRPS.

I have been treated for severe pain from complex regional pain syndrome with a special pump that delivers a drug called baclofen to the spinal cord. Everything was going really well, and then all of a sudden, I stopped getting the good results I had hoped for. Now my pain is starting to come back. I can’t do even the simple things I was doing like pick up a pot of coffee and pour. Have I reached some kind of plateau? Will I continue to get better with a little more time?

Baclofen is a drug that has been used to reduce spasticity by stopping the messages that go from the muscles to the spine. They do this by inhibiting the GABA receptors in the nervous system. The result is to prevent the release of neurotransmitters. Neurotransmitters are chemicals that send and receive signals between a neuron (nerve cell) and the rest of the body.

Baclofen can be delivered through a pump into the subarachnoid space of the spine. The subarachnoid space refers to an area between a layer of spongy tissue that covers and protects the spinal cord and the spinal cord. Cerebrospinal fluid is contained within the space. The brain and spinal cord float in cerebrospinal fluid. The fluid is designed to act as a cushion or buffer for the nervous system.

The pump used to deliver the baclofen can be placed in the patient’s abdomen just under the skin. A thin tube called a catheter goes from the device to the subarachnoid space in the spinal canal. A special X-ray called fluoroscopy is used to help guide the surgeon when putting the device in place.

Although this device works well in reducing pain and the debilitating symptoms of complex regional pain syndrome (CRPS), there have been many pump-related problems reported. An infection can develop in the pocket where the device is implanted under the skin. Pump migration (movement of the pump) with failure of drug delivery has reported in obese patients.

The first thing to look for when the drug seems to help but then the patients get worse is a problem with the catheter. A little trouble-shooting may be all that’s needed. The catheter may be kinked or blocked. Sometimes it gets disconnected from the pump.

It could be something even simpler than that. You may just need an adjustment in the dosage being delivered by the pump. The best thing to do is to call the surgeon who implanted the device right away. Although this may not be an emergency, it should be treated with urgency until the exact cause of the problem is determined.

I developed a problem in my arm after shoulder surgery called complex regional pain syndrome. I vaguely remember my mother having something like this after a heart attack years and years ago. Is it an inherited trait of some kind in our family? I do have two daughters I’m concerned about.

Scientists continue to unravel the mystery of complex regional pain syndrome (CRPS). CRPS is a condition that develops after surgery or some other type of trauma. The patient develops exquisite pain and/or tenderness usually of one extremity (arm or leg). Symptoms of sweating, hair growth, swelling, and changes in skin color and temperature develop in that extremity. Changes in the nail growth and strength are also common symptoms of CRPS.

No one knows exactly what causes CRPS to develop — or why only certain people (usually women) are affected. There appears to be involvement of both the immune system and nervous system. A recent study using a drug called baclofen may shed some light on this condition.

Baclofen is a drug that has been used to reduce spasticity by stopping the messages that go from the muscles to the spine. They do this by inhibiting the GABA receptors in the nervous system. The result is to prevent the release of neurotransmitters. Neurotransmitters are chemicals that send and receive signals between a neuron (nerve cell) and the rest of the body.

The fact that the baclofen really helped patients who had CRPS and dystonia was proof that the nervous system (and especially GABA inhibition) is part of the underlying pathology. Dystonia is the abnormal movement of a body part. The patient experiences involuntary (not under their control) muscle contractions. The arm or leg twists, freezes into one position, or twitches repetitively.

But other studies have also shown that something goes wrong in the local immune system of the skin and/or there is inflammation of the sensory nerves. The result is a mixed up set of messages to and from the spinal cord.

Although women tend to be affected more than men, there is no convincing evidence that it’s an inherited genetic trait. More study is needed before the condition is fully understood. Like many neurologic-immune based problems, it is likely multifactorial. This means there are many variables that contribute to the development of CRPS.

My husband banged his thumb in the car door and ended up with a terrible condition called CRPS. We can’t figure out why this has happened. It wasn’t nearly as bad as some of the past injuries he’s had. Can you shed any light?

Sometimes after trauma (even minor trauma) to human tissue, a chronic pain condition develops. Once called i>reflex sympathetic dystrophy (RSD), this syndrome is now referred to as complex regional pain syndrome (CRPS).

With CRPS, the pain generated is greater than expected for the degree of tissue trauma that has been sustained. The pain begins early on and spreads from a small, local area to a larger, regional distribution. Patients report a burning sensation that comes on suddenly for no apparent reason. It is intense. Usually, there are other symptoms such as sweating, hair growth, and changes in skin color and texture.

No one knows for sure what causes this to happen. Lab studies of blood and tissue samples appear normal. There is no apparent inflammation of the affected soft tissues (e.g., skin, muscles). There is some evidence that the cellular changes are occuring within the nerve fibers to the affected tissues. Most of what we’ve learned so far has come from animal studies.

It appears that there is an over reaction of the neurogenic inflammatory process with too much release of substance-P. Substance P is a neuropeptide that acts as a messenger of information in the nervous system.

Substance P is released from the ends of specific sensory nerves. It seems to be able to increase the excitability of pain responsive neurons. That may answer some of the questions about why people develop so much pain, but it doesn’t answer the question of why those particular people have this pain response after an injury.

More study is needed to narrow down causative or predictive factors. Determining why some people seem more susceptible than others may help us find a way to identify those folks early and stop this painful process from ever getting started.

What’s the difference between getting used to a drug and becoming addicted to it?

It’s important for healthcare professionals to be able to tell the difference between a patient who has gotten used to their medications and those who have become addicted.

If you take a medication for pain, after a while, your body may become used to the medication in your body and eventually it will need a stronger dose to relieve the pain. If you don’t take the medication, you feel more pain and discomfort, but you only feel the physical reaction to not having the medication.

If you are addicted to a medication, if you miss a dose, you *need* to have the medication. You think about it, you have symptoms besides pain, such as sweats, shakiness, and so on. When you receive the next dose, these symptoms go away.

My mother is in agony after many years of severe back pain but the doctors just won’t give her strong enough medications. They’re afraid she’ll become addicted, she says. Why is it so hard to get proper pain medications?

Treating chronic, long-term pain isn’t easy. It’s not like a toothache or broken bone, where you can pinpoint the pain and relieve it. Chronic pain is usually not as defined.

Severe pain, for acute pain, like the broken bone, may be relieved by prescription medications or opioids (narcotics, controlled drugs). They’re taken as needed for a short period of time. But with chronic pain, it’s a continual pain relief that’s needed and there is often a great fear that people who take opioids over a long period can and may become addicted to the medication, leading to its misuse and abuse.

If you’ve not tried going to a pain clinic, that might be the next step for you to investigate. No-one should be living in constant, severe pain.