By Eileen Lucey
PPS Vice President
Yet man is born to trouble as surely as sparks fly upward.
—Job 5:7
Pain, something that everyone has to deal with, is still imperfectly understood and often badly managed. Attitudes held over from Puritan days make many people reluctant to mention pain, much less seek the available therapies.
Meanwhile, pain related ailments cost United States employers approximately $80 billion a year in lost productivity and sick days. In fact, chronic pain disables more people than cancer or heart disease, and it costs the American public more than $100 billion in medical expenses annually. It is the number one cause of lost work productivity in our society. There is tremendous cost to society associated with pain.
While studies have shown that reducing pain speeds healing, few doctors are trained in the special field of pain management. Individual response to pain therapy is idiosyncratic, and doctors walk the fine line between making sure patients are not suffering and keeping them from addiction.
The concerns about drug dependence are overstated by government agencies, which often refuse to acknowledge that addiction is rarely a result of treating legitimate pain. As with most areas of health care, it is best if the patient has the knowledge and up-to-date information to help their doctor choose the best plan of treatment.
The pattern of pain, intensity of pain, frequency of pain, and response to various pain treatments may differ significantly from someone with the same diagnosis. Pain also changes, not only over time, but also from day to day and hour to hour, according to your activity, mood, stress level and general health. Results from pain treatments need to be judged in a functional sense, since there is no way to measure effectively.
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The International Association for the Study of Pain (IASP) defines pain as an “unpleasant sensory and emotional experience associated with actual or potential tissue damage or described in terms of such damage.” Pain is what we think it is. It is a subjective experience. Pain is generally divided into three major subheadings; which are then divided according to whether the pain is acute or chronic. The three types of pain are somatic, visceral and neuropathic. An individual can experience these separately or in some combination, making the treatment options more complex. Somatic and visceral are generally felt to be easier to treat than neuropathic pain.
All pain is caused by the activation of specialized nerve receptors called nociceptors. There are millions of nociceptors, which can be triggered by acute or chronic diseases, as well as various types of injury, including trauma, excessive heat or cold, physical pressure, or chemical changes within body tissues that signal damage.
Somatic pain is centered in the external soft tissues (cutaneous) and in the deep musculoskeletal tissues. This would be the primary type of pain experienced by most pemphigus and pemphigoid patients. Visceral pain has to do with the internal organs, and is usually caused by pressure on the organs or disease. Neuropathic pain has to do with pain receptors in the nervous system, which have been aggravated by external damage or by some drug treatments. Chemotherapy, radiation and surgery can all cause a neuropathic response.
Acute pain is defined as pain that is usually short-lived and can be attributed to a specific cause. It can be a single episode, such as pain as a result of surgery; or intermittent, as with a person whose back will occasionally act up. Acute would be a fair descriptor for the pain resulting from PV blisters. Acute pain is self-limiting, in that it is usually confined to a specific time frame and severity. The cause of the pain is obvious, and the pain will subside when the outbreak is controlled.
Chronic pain is usually defined as pain that lasts over three months. Being more difficult to pinpoint, it is a much greater challenge to treat. It is harder to describe, which makes choosing a response more difficult. Often it is a matter of trial and error to find what works best for the individual patient. Doctors find this a challenge, as they have to admit that what worked on a previous patient might not be best for you. Chronic pain is an area where it is absolutely essential that the patient work closely with the doctor, providing feedback until a solution is found.
Chronic pain can result from some of the treatments for pemphigus and pemphigoid, such as steroids. Tapering from steroids can cause a muscular aching that can become disabling. Osteoporosis, also a possible result of steroid use, can lead to muscle and bone aches that can become chronic. Chronic pain cannot be cured until the source of the pain is located, and often not even then. Some damage is not treatable, or the treatment is more risky than the possible result. While acute pain can be treated, chronic pain must be managed. The ideal in treating chronic pain is to do so without impairment of function.
A minor subset of pain is referred pain. This occurs when the pain is experienced in a different location from the source of the problem. Examples would be pain in the hands as a result of stress to the back muscles or headaches resulting from damage to the spine. These are best handled by giving your doctor all the information; not minimizing the fact that your back hurts because it is the headache that is causing the most trouble.
The doctor will also ask about patterns of pain: Do you have pain all the time, or is it intermittent? Do some activities cause more pain than others? The doctor needs the whole picture in order to assist.
It’s important to remember that there are solutions, and that your doctor can help you find the options that are best for you. As a wise man once said, “Pain is inevitable; suffering is optional.”
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The more severe the pain or illness, the more severe will be the necessary changes. These may involve breaking bad habits, or acquiring some new and better ones.
— Peter McWilliams
Pain treatment is a complex issue, made more difficult by the variety of ways pain can present in a patient. Doctors and patients should work to come up with a continuum of strategies, some of which will be useful daily and some only on the occasion of an outbreak. Since most doctors are not trained in pain management, a consultation with a specialist can assist. Pain management specialists are accustomed to working with the primary physicians to balance treating the disease with the need to make the patient comfortable. It is critical that a doctor consulted for assistance with pain is aware of what medications and other treatments are being used, so that the different strategies are not conflicting.
Pain therapies are always started with the simplest, least invasive approach. If aspirin will work, it would be ridiculous to suggest surgery. Whether meeting with a specialist or arranging a consultation with your own doctor specifically to discuss pain management, it is critical to be clear about what you have tried up to that time and what is safe for you to try.
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It can be frustrating to have the doctor suggest swimming when you know that the pools available use chemicals that aggravate your skin, so it is best to be clear up front. Makes notes in advance if it will make you more comfortable. If the doctor suggests something you haven’t tried, ask them to expand on what the treatment would do and why they think it would be useful for you.
The starting point for most pain treatment is the basics: bed rest, oral pain medications and physical therapy. Of course, with those suffering from skin lesions, bed rest may not be a comfortable solution.
Starting with analgesics (aspirin or acetaminophen) or anti-inflammatory agent (ibuprofen), and proceeding to nonsteroidal anti-inflammatory drugs (NSAIDs) is typical. NSAIDs may provide pain relief within the first 24 to 48 hours of treatment, but it may take up to three weeks to get full benefit from these drugs, which includes relief from pain, swelling and inflammation. These are all useful drugs, but can become dangerous when taken too often or for too long. (Editor’s note: many doctors prefer patients taking prednisone use acetaminophen instead of ibuprofen.)
Exercise is a recommendation that most of us are used to hearing and few of us take to heart. The last thing we want is to get sweaty, and often the very idea makes us tired. Recent studies have shown that it’s not necessary to go all out to get the payoff from exercise. Walking even for a short time a few times a week can provide results, allowing you to add more time and speed as you progress. Exercise stimulates the release of the body’s natural pain relievers called endorphins. Exercise also promotes flexibility, strength, endurance and helps reduce stress. It can also strengthen unused or weak muscles to help take over the work of a muscle that is overworked and causing pain.
Rehabilitative therapy encompasses a variety of techniques to reduce pain and increase function. This can include physical therapy, massage and chiropractic therapy.
Therapists may use stretching exercises, heat or cold therapies, water therapy, muscle relaxation techniques, biofeedback, traction, or weight training and conditioning. Rehabilitative therapy is an important component of early pain treatment, and is often combined with other treatments.
A variant, which would not be of likely use to those with skin conditions, is transcutaneous electrical stimulation (TENS). In TENS therapy, electrical impulses are applied to the nerve endings through electrodes that are placed on the skin over the painful area. It is believed that the impulses temporarily interrupt the transmission of pain signals from small sensory nerves at the site of the pain. TENS may also stimulate the release of endorphins, which produce analgesia and feelings of well being.
Chronic pain is a tremendous psychological burden, and a person’s response to and tolerance of pain are directly related to issues of personality, culture and past experiences. Recognizing that the mind-body relationship can impact how you handle pain, many doctors recommend seeing a counselor on cognitive and behavioral therapy.
These therapies take all these factors into account in an effort to help a patient learn new skills and strategies for dealing with pain. These can include relaxation techniques, visualization exercises and one-on-one counseling sessions with the patient and family to build coping skills.
One of the common treatments for pain would be an unlikely choice for pemphigus and pemphigoid patients.
Nerve blocks often use steroids to block pain at a certain location, something that would be counter-indicated for those already taking steroids or trying to taper off from using them.
Nerve blocks using anesthetics are most often used for the sort of pain caused by injury and not for chronic pain.
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Powerful pain medications known as opioids (narcotics) are often used in cases of severe chronic pain that has not responded to first-tier therapies, and for which surgery is either not an option or has failed. Opioids are effective in relieving the most severe pain. However, side effects — ranging from drowsiness and constipation to an increased risk of addiction—are common, particularly when administered systemically by pills or skin patches.
Studies have shown that using narcotics to treat acute pain does not often lead to addiction, but doctors are still wary of over-treatment. Opioids are not a useful choice in treating chronic pain, as the impairment from using them is in conflict with allowing the patient to live a normal life.
The last levels of treatment are the most severe and would only be used when nothing else has worked. Surgery is recommended when there is a specific cause that can be determined, such as a herniated disk or internal scarring that impedes function. Neurostimulation uses low-level electrical impulses to interfere with or block pain signals from reaching the brain.
The therapy causes painful sensations in the affected areas to be replaced with a tingling or massaging sensation. Neurostimulation devices include spinal cord stimulators (formerly known as dorsal column stimulators) that use electrodes placed in the space above the spinal cord (epidural space), and peripheral nerve stimulators that use electrodes placed directly over nerves located outside the central nervous system.
For some types of pain, an implantable drug pump (also known as an intrathecal drug pump) is used. Implantable drug pumps deliver medications directly to the fluid (cerebrospinal fluid) in the space (intrathecal space) surrounding the spinal cord.
This allows powerful pain drugs, such as opioids, to be used in significantly smaller doses, minimizing the likelihood of unpleasant side effects that commonly occur with larger, systemic doses taken orally or skin patches. Neuroablation is a surgical technique that permanently blocks nerve pathways to the brain by destroying the nerves and tissue that are the source of the chronic pain. Several procedures are used.
Cordotomy is the surgical division (cutting) of a tract of the spinal cord. Rhizotomy involves selective destruction of a nerve close to the spinal cord. Thalamotomy uses electrocoagulation, or burning, of the thalamus area in the brain. In addition to the risk of causing inadvertent motor or sensory dysfunction in other than the affected area, neuroablation techniques are sometimes only temporarily successful, because pain can redevelop in an adjacent or different nerve pathway.
Once you have created a plan to deal with pain, the next stage is putting it into effect. Be aware that the process is not infallible, and —especially with chronic pain— there will be days when things are not working.
What to do about pain, part 2
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