Pain is a major motivator..emotionally and physically, to do something--if anything, to deal with the effects.
Having chronic, daily pain for years now--seems incrdulous, that my "normal" is level 7 out of 10, and really there is not much to be done about it, as it is caused by lupus, Rheumatoid Arthritis, and etc, and well, there are no real good solutions that make me feel like I am a million bucks! Well, a girl can hope!
The following are some excellent meat and potatoes articles on pain and dealing with it.
The Emotional Impact of the Pain Experience
Adapted from a presentation at the SLE Workshop at Hospital for Special Surgery on December 18, 2008
Maris Pasquale, LMSWOrthopedic Social Worker, Ambulatory Care Center,Department of Social Work ProgramsHospital for Special Surgery
Introduction
Maris Pasquale, LCSW, has been the social worker for Hospital for Special Surgery's Ambulatory Care Center Pain Management Clinic for the past four years, working with patients who have musculoskeletal pain due to rheumatologic and orthopedic pain conditions.
The Experience of Pain
Many different factors influence the experience of pain, which is different for everyone. These include:
- Age
- Gender
- Culture
- Ethnicity
- Spiritual beliefs
- Socio-economic status
- Emotional response
- Support systems
- Life before pain onset
Other factors can include a learned response that can be related to the response of your family. Parents, for example, may respond to a child’s pain in a certain manner, setting a foundational pain response for an individual that may influence future pain experiences. Also, societal and medical care systems can impact the pain experience. For example, you may not have access to the care of a physician who is an expert in managing pain.
Additionally, changes in functioning, role (societal, social, or family), daily routines, job status, and sleep disturbance may contribute to chronic pain. These factors can cause distress which may also increase pain.
Some common emotional responses to pain can include anxiety, depression, anger, feeling misunderstood, and demoralization.
According to a 2004 study, individuals who are experiencing chronic pain in primary care settings have a higher probability to experience anxiety and depressive disorders than those who are not.(1)
It is important to recognize whether these factors are prevalent in your life. If they are, it's important to seek help from your primary care doctor or social worker, or call 1-800-LIFENET, a multilingual crisis intervention hotline.
Emotions and the Chronic Pain Cycle
Pain is influenced by emotions, and the cycle of pain and emotions are interrelated. Emotions may directly impact physical change as well. For example, when you are anxious or angry, your muscles may tighten, and that physical change may also contribute to increased pain. Another challenge may be that patients might feel stigmatized when they demonstrate intense emotions like these in the context of their treatment.
Believing that you have control over your life and can continue to function despite the pain or subsequent life changes has been shown to decrease depression.
Impact of Pain on Identity
How you identify yourself to others is an important element of your individuality, and having chronic pain and not knowing when it will ever go away, if ever, is a huge issue that can change the course of your identity.
If you are experiencing chronic pain, you might not be able to do certain tasks or fulfill certain roles that were once common, and that can feel disempowering. Where and how people derive value in their identity is culturally informed, including gender, ethnicity, and socioeconomic status. Depending on what roles or characteristics are most valued to an individual, impairment in that area will most affect his or her identity and make the pain feel more pronounced.
For example, someone who feels culturally that physical strength and ability is extremely highly valued may feel the impact of the pain experience more significantly if it impairs this ability and he or she can no longer complete the same physical tasks.
Similarly, the invisibility of pain can be isolating, especially in cases when a person’s outwards appearance remains the same.
Impact of Pain on Family
As you experience pain symptoms, either acute or chronic, this can shift family patterns and roles. For example, a parent might not be able to fulfill certain tasks anymore and communication between family members may change based on not wanting to “bother” the affected member.
Other family factors may include increased stress, financial burden, effect on sexuality and other intimate relationships, and potential resentment in the relationship. For family members of people in chronic pain, a goal is to strike a balance between validating patient’s pain and experience while helping him/her stay involved in life.
Impact of Pain on the Medical System
According to another study in 2005, patients report not feeling heard by their doctors because they may not agree with the medical interpretation of pain.(2) Patients may believe that the pain is related to other ailments or medical history and disagree with the doctor’s opinion.
When patients’ pain does not respond to a certain treatments or interventions, they may feel like symptom magnifiers and complainers. As a result, patients may feel demoralized or feel they are not being heard or taken seriously, all increasing patient distress.
Communicating with Your Doctor
Pain is a disease of reporting. Keeping a home journal may help to be more descriptive, accurate, and increase recall, since pain experience may be different on each day.
To speak the same language as your doctor, become more familiar with common pain scales. Familiarity with these scales and anticipating the way pain is measured medically may help communicate this very personal experience in the most objective way.
Common Pain Assessment Tools
Brief Pain Inventory
The BPI measures both the intensity of pain and the interference of pain in the patient's life. It also asks the patient about pain relief, pain quality, and patient perception of the cause of pain. BPI is based on scales:
“0” represents “no pain” and “10” represents “pain as bad as you can imagine”
“0” represents “does not interfere” and “10” represents “completely interferes”
Wong-Baker Faces Pain Scale
This scale, which goes from Level 0-10, asks the person in pain to choose from a series of faces that best indicate the level of pain he or she is experiencing.
Level 0 is a happy face, indicated as “No Hurt”, and the scale goes up to Level 10, which is a sad/pained face with tears, indicated as “Hurts Worst.” More information and a visual example are available at
http://www.wongbakerfaces.org/.
Numeric Verbal Faces Pain Scales
This scale also uses facial pictures and a rating scale of 0-10. Level “0” is “No Pain,” while Level “10” is “Pain as Bad As It Could Be.”
Describing Pain Experience
What is pain? Other commonly used terms: Aches, soreness, discomfort.
Be descriptive: Include location, timing, and intensity. Using descriptive words will help medical team be more informed about type of pain, where it roots, etc. Examples: Burning, aching, stabbing, piercing, throbbing.
Maladaptive Pain Beliefs and Ways to Address Them
As we experience pain, we may have many different beliefs of how we should live our life with the pain we are experiencing; these beliefs may be maladaptive and might hinder our functioning level. In other words, some coping and adaptive mechanisms used by those with chronic pain may not be the most physically or psychologically beneficial.
Examples of maladaptive beliefs as related to pain are:
- Catastrophizing: Exaggerated, negative reaction towards actual or anticipated pain experiences. In this case, patients report higher pain, poorer physical functioning, more depression and stress, and more disability.(3,4,5)
- Pain is sign of damage.
- Pain means activity should be avoided.
- Pain leads to disability.
- Pain is uncontrollable.
- Pain is permanent.
According to a 2007 study, these maladaptive beliefs can cause higher pain, poorer physical functioning, depression, stress, and more disability.
Maintaining a sense of control over your life and believing you can continue to function, despite the pain, can decrease risk of depression. Gaining control can mean finding more resources to understand the impact of pain, such as patient education about how to live with pain, communicating to your doctor about your different concerns and challenges, discussing if pain is a sign of damage or whether activity can be continued based on tolerance, and accepting your situation.
Coping with Pain through Education and Spirituality
It is important for you to ask for any educational materials that can be helpful to understand the symptoms of pain and how to reduce pain, as well as effective methods to acknowledge your feelings and communicate them to others.
Also, many people find it effective to bring spirituality into their life as a way of coping with pain. Several studies have shown that spiritual belief can help reduce pain. If you so choose, you should be able to feel comfortable to share this component with your health care providers and let them know which methods you feel are helpful to the pain experience.
Mindful Meditation and Other Techniques
Mindful meditation, shown to help decrease stress and pain, involves focusing the mind to increase awareness of the present moment. This method to help cope with pain can be easily done anywhere, even on the bus.
An example of mindful meditation would be to sit up straight, close your eyes, and put aside all thoughts of the future and past. Staying present, the focus of awareness remains on your breathing.
This exercise could be done for just a couple of minutes, letting your thoughts come and go while being aware of your current state. It can be most helpful during stressful times such as holidays or during difficult life events.
Taking a few minutes in the day to do practice mindful meditation can be beneficial. Through performing this kind of exercise, you can create a sense of control, which is crucial in making your pain experience more manageable.
In addition to mindful meditation, yoga and tai chi are recommended.
Resources
Some helpful websites may enhance knowledge and understanding of coping with pain:
Most importantly, the impact of pain is an entirely individual experience.
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Joint Pain in Patients with Lupus: Is It Really Arthritis?
Diagnosing and managing lupus-related conditions such as synovitis, myalgia, myositis, tendonitis, osteonecrosis, osteoporosis, joint infection, and fibromyalgia
Ivy BillonesVolunteer, Mary Kirkland Center for Lupus Care, Hospital for Special Surgery
Pretima Persad, MPHManager, Mary Kirkland Center for Lupus Care, Hospital for Special Surgery
Kyriakos A. Kirou, MD, DSc, FACP
Clinical Co-Director, Mary Kirkland Center for Lupus Care, Hospital for Special SurgeryAssistant Attending Physician, Hospital for Special SurgeryAssistant Scientist, Hospital for Special SurgeryAssistant Attending Physician, NewYork-Presbyterian Hospital/Weil CornellAssistant Clinical Member, Memorial Sloan-Kettering Cancer CenterAssistant Professor of Clinical Medicine, Weill Cornell Medical College
Introduction
Joint pain is a very common complaint in lupus and may lead to difficulty with one’s usual daily activities. A rheumatologist will try to determine the origin of pain, whether it is in the joint lining (which is true arthritis), the soft tissues around the joint (due to problems with tendons or ligaments), or the bones. Upon diagnosing the origin, he will then dictate the proper therapy. Although joint pain is usually due to lupus, it may also be due to medication complications or an associated rheumatologic condition.
I. Joint Pain Due to ArthritisII. Pain in Muscles or Tendons Around the Joints Due to LupusIII. Joint Pain Unrelated to Lupus Arthritis
I. Joint Pain Due to Arthritis
Arthritis or synovitis (inflammation of the joint lining, called synovium) is common in Systemic Lupus Erythematosus (SLE); up to 90% of patients will have arthritis sometime during their experience with the disease.
Lupus arthritis has many similarities - but also differences - withrheumatoid arthritis (RA). In both cases, the disease affects many joints in a symmetric distribution (i.e., both wrists and hands will be affected at the same time) and there is a predilection for involvement of the hands and wrists. Lupus associated arthritis, however, is not as severe and causes less swelling, shorter periods of morning stiffness, and only rarely causes erosions to the bone (holes in the bones around the joint).
The symptoms are often of short duration (days) and may change location from one joint to another. The pain is usually more severe than expected based on the appearance of the joint on examination. In fact, sometimes there is pain without swelling or even tenderness in the joint, in which case the symptom is called “arthralgias” (literally meaning “joint pain” in Greek).
In about 5-10% of patients with lupus arthritis, there are significant deformities (misalignment of the bones) of their joints, mainly affecting the fingers. Characteristically the fingers deviate towards the direction of the little finger and become bent in such a way that they are called “swan neck deformities,” as the finger now resembles the neck of a swan. Although the deformities in lupus are similar to those occurring in RA, they are not due to bone damage but instead to ligament and tendon laxity, and therefore are easily “correctable” with external pressure. This condition is called “Jaccoud’s Arthropathy” and usually happens in patients with long-lasting disease. Interestingly, MRI (magnetic resonance imaging) or ultrasound imaging shows fluid around tendons and thickening of the joint capsule (the outer cover of the joint), but not true synovitis. Of note, anti-CCP, a test used in diagnosing RA, may be positive in lupus patients with this condition.
In another 3-5% of patients, the arthritis looks remarkably similar to RA, including the formation of erosions and synovitis on the MRI. Because of the similarity, this condition is sometimes called “rhupus.” These lupus patients may also have a positive anti-CCP test. It is still not clear whether rhupus represents an overlap of RA and SLE, or simply another form of lupus.
Management
Lupus arthritis is often first treated with nonsteroidal anti-inflammatory medications (NSAIDS), such as ibuprofen or naproxen. If the patient does not have a good response or there are contraindications to the above medications, short courses of low doses of glucocorticoids (i.e., 5-10 mg of prednisone) may be used. In unresponsive cases, Disease-Modifying Antirheumatic Drugs (DMARDs) such as methotrexate and azathioprine may be used. The rheumatologist usually makes decisions about the different therapies based on whether other organs are also involved by the disease.
II. Pain in Muscles or Tendons Around the Joints Due to Lupus
Often patients complain of pain that does not come from the joint itself, but rather the muscles (myalgia and/or myositis) or tendons (tenosynovitis or tendonitis) around the joint.
Myalgia/Myositis
Pain in the muscles (myalgia) is a common complaint among lupus patients (50-80%). The upper arms and thighs are commonly involved areas. When the pain is accompanied by muscle weakness, the condition is more severe and it is called myositis (5-10% patients). In that case blood tests, such as the CPK, are elevated, indicating muscle injury, and the condition is managed similarly to Dematomyositis or Polymyositis.
Tendonitis
Tendonitis refers to inflammation of the tendons (fibrous tissue that connects muscles to the bones). This condition is also relatively common in lupus (10% of cases) and may affect the elbow (epicondylitis, also known as tennis elbow), shoulder (rotator cuff), heel (Achilles tendonitis or plantar fasciitis). Tearing of the tendons rarely occurs.
Management
Most cases of myalgia and tendonitis will respond to joint rest, physical therapy, and treatment with nonsteroidal anti-inflammatory medications.Injections of steroids or surgery may be required in more difficult cases. Myositis typically requires more intense therapy with high doses of glucocorticoids with or without DMARDs.
III. Joint Pain Unrelated to Lupus Arthritis
Not all joint pains are due to lupus. Other conditions that need to be considered include the following:
Osteonecrosis
Osteonecrosis refers to the death of bone tissue (bone necrosis). Depending on its severity may either cause no symptoms, cause significant joint pain, and/or often collapse of the bones.
This condition is relatively common in lupus (about 10% of patients), but does not relate to the disease activity. In fact, osteonecrosis often happens when the lupus is quiet. It is often attributed to long-term use of high doses of glucocorticoids.
The most common joints to be affected are the hips (manifested as pain in the groin), followed by the knees and shoulders. The diagnosis is often made by a plain x-ray. However, in early stages an MRI is necessary to show the problem.
Management
Early stages may benefit from conservative therapy including pain medication and limited weight bearing. In more advanced disease, surgery is required. In cases of hip bone collapse, hip arthroplasty (replacement) will need to be performed.
Osteoporotic Bone Fracture
Osteoporosis (weakening or thinning of the bone) may occur in lupus due to the disease or the medications used (especially glucocorticoids).
Usually, patients complain of sudden pain in a localized area of the spine, sometimes after only minimal trauma. X-rays will usually show the fracture as a compression (loss of height) of a vertebra. Sometimes MRI will be necessary for subtle cases. Fractures may also involve long bones such as the hip.
Management
The best therapy is prevention. Patients should have a bone mineral density test (DXA) to assess their bone status and should optimize their intake of calcium and vitamin D. In many cases, a potent anti-osteoporosis agent such as a bisphosphonate or parathyroid hormone will also be needed for extra protection.
Septic Arthritis
Septic arthritis, or joint infection, is a medical emergency and requires prompt diagnosis and therapy. Despite the fact that patients with SLE take medication that “lower” the immune system and therefore make it easier for an infection to occur, septic arthritis is not very common in lupus. Causative infectious agents may include Staphylococcus aureus, Neisseria gonococci (a sexually transmitted disease), etc.
Management
Aspiration (extraction) of synovial fluid from the joint is performed along with blood tests. Once the bacterial strain is identified, antibiotic drugs are prescribed accordingly. In most cases, surgery is required for “cleaning” of the joint.
Fibromyalgia
This is a chronic condition of widespread pain and exhaustion.Fibromyalgia can exist by itself or accompany other diseases such as lupus. However, it is not due to active inflammation from lupus and therefore no extra immunosuppressive therapy is required.
Management
Management is often difficult and requires full commitment by the patient. Improvement of sleep, regular and slow-advancing aerobic exercise, behavioral therapy, and anti-depression medications are often needed for optimal results.
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Talking About Pain: How to Help Your Doctor Help You
Summary of a presentation at the Living with RA Workshop
Seth A. Waldman, MD
Director, Division of Pain Management, Hospital for Special SurgeryClinical Assistant Professor of Anesthesiology, Weill Cornell Medical College
Rheumatoid arthritis is a systemic, inflammatory, autoimmune disorder. Inflammation causes redness, warmth, and swelling of the joints. Pain comes from the inflammation of the joints and tendons. Physicians seek to combat the inflammation at each phase of the immunologic process with:
- Non-steroidal anti-inflammatory drugs (NSAIDs) to control inflammation and pain in general; and
- Disease-modifying anti-rheumatic drugs (DMARDs) to combat the overactive cells and their history and to alter the natural history of RA, possibly even halting the development of joint damage.
It's important that the cause of any pain be identified, if possible. People with RA can have pain from many other causes, just as anyone without RA does, and those causes need to be identified and treated, in hopes of curing or controlling the problem without long-term pain medication.
Nonetheless, people with RA still may have chronic pain, as well as acute severe pain episodes, either due to flares or to post-surgical pain. However, pain is often under-reported by patients and/or trivialized as a symptom by physicians.
This is changing, because the Federal government now has a new standard of pain care. It requires physicians to ask patients what they are feeling and what medications they are using, and to do something about the pain - in the same way they check your vital signs (temperature, pulse, and blood pressure) and do something if the signs are abnormal.
Pain Management Programs
Further, major hospitals have been developing dedicated pain management programs. For example, here at the Hospital for Special Surgery we have an acute pain service, which is part of the Anesthesia Department. It includes nurses and anesthesiologists who see you for the first few days after surgery and then transition you to milder medicine that your physician takes care of or a stronger medicine that would be managed by a chronic pain physician. We also have a pain center that manages a lot of outpatients, many of whom have rheumatoid arthritis, who arrive by referral from their rheumatologist or surgeon.
The decision to refer to a pain management specialist has to do with the patient and the comfort level of the physician caring for the patient, based on the doctor's experience with these medications and perception about how the patient is doing. Pain management specialists tend to see patients whose pain has not improved and whose doctors have tried different approaches and can't figure out why the patient has not improved on the more commonly used medications.
Descriptions of Pain
Because pain is so subjective and varies so much from one person to another, it's important for you to be as specific as possible in describing your pain to your physician. Consider the following issues.
- On a scale of 1 to 10, how much pain are you having - if 10 is the worst pain you've ever had?
- What is the pattern of your pain - where does it arise and where does it spreads to?
- What is the duration of your pain - how long does it last - and how often does it occur?
- What does your pain feel like? This is very important because the words you use to describe your pain give your doctor clues on its cause as well as what drugs might help it.
Is it a deep aching, throbbing, gnawing or dragging pain? If so, it's probably what doctors call nocioceptive - nerve endings are being injured by some ongoing disorder, such as arthritis. For example, when a joint is being destroyed, the little nerve endings in the body sense that and send a normal pain message just as if it would if you cut your hand - a normal transmission of pain. Or you may have perioperative pain as you recuperate from joint surgery. These are normal, acute types of pain Nocioceptive pain tends to respond well to routine analgesics, such as NSAIDs and opioids that act in the brain.
On the other hand, is it burning, shooting, or tingling pain? If so, it's probably neuropathic pain - caused by abnormal processes that may persist after an injury or disease; nerves that constantly transmit pain become trained, through cellular changes, to transmit pain messages in the absence of an ongoing disorder. In such chronic pain, the symptoms become "imprinted" on your nervous system, which remembers what pain feels like and continues to send those messages, for example, beyond when your surgeon thinks you should be having pain post-operatively. Neuropathic pain responds to so-called adjuvant drugs that affect the brain's perception in unexplained ways. These include antidepressants and antiseizure drugs.
- What has been the psychological impact of the pain on you - the degree of suffering - which can vary from the pain person to person from the same type of pain. This can help the physician determine the meaning of the pain for you and what additional treatments (beyond medication) might be useful, such as physical therapy and exercise programs, relaxation therapy and yoga, acupuncture, psychological support for depression or anxiety disorders, which are common in people who have chronic painful illnesses. All of these approaches should be considered in a comprehensive pain management program.
- What medications you are taking and in what doses and for how long - and to what extent do they help the pain?
It can be useful to keep a pain diary for a week before seeing your doctor. Note when pain occurs, where it hurts, what it felt like, what you were doing when it hit, how severe it was on a 1 to 10 scale, and what you did to try to reduce the pain and the result of what you did.
Increasing Use of Opioids for Pain Management
After surgery, for acute pain management, some people receive intravenous morphine medication or anesthetic medications that make parts of the body numb. Historically, potent narcotic drugs, such as morphine and codeine, were reserved for people who were terminally ill. Doctors were loath to prescribe them for chronic pain management because of fears of addiction and side effects. However, that attitude has changed dramatically, especially among pain specialists, as these fears have proved unwarranted. These drugs are now used very widely for people who have so-called benign pain (to distinguish it from those who have malignant tumors). Physicians are increasingly open to prescribing very strong medications when necessary and even maintaining people on those medications after the acute period, such as immediately post-surgery, has passed. Some people can tolerate very high levels of narcotic medications, although you don't want to be on those medications long-term if you can find relief from an alternative, and most people don't need to be on narcotics long-term.
The Range of Pain Medications
Most people can find some medication that they can tolerate and that gives them very good relief. However, your need for pain medication - and the type that gives you relief - may change over time. You need to have a plan for dealing with the different types of pain you have:
- the chronic background pain that may be with you frequently or all the time, and
- the acute severe pain that may arise - when you don't have time to wait for an appointment with your doctor in two weeks.
Your doctor should work with you to have a "plan b" - with medications to institute - when such acute severe pain arises. Here's the range of medications from which your doctor may choose:
- Acetaminophen (Tylenol)
- Non-steroidal anti-inflammatory drugs (NSAIDs) such as aspirin, ibuprofen (Motrin, Advil), naproxen (Aleve); diclofenac (Voltaren), and others - with low-dose ones available over the counter and higher-dose ones available by prescription;
- Adjuvant drugs, including: antidepressants such as amitriptyline (Elavil), paroxetine (Paxil) and venlaxafine (Effexor) and the SSRIs, such as fluoxitine (Prozac); anti-seizure drugs, such as gabapentin (Neurontin), carbamazepine (Tegretol), phenytoin (Dilantin) and cloazepam (Klonopin); and some anti-hypertension drugs, such as clonidine (Catapres) - although these drugs require your doctor to be comfortable with "off-label" prescribing (using an FDA-approved drug for an indication other than that for which it has been approved;
- Opioid-like drugs, such as tramadol (Ultram);
- Weak opioids, such as codeine;
- Strong opioids, such as morphine;
- Controlled-release opioids, such as Oxycontin and MS Contin;
- Long-acting opioids, such as skin patches containing fentanyl (Duragesic);
- Invasive analgesia, infusing drugs through a tiny catheter inserted into the spinal space.
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The Complex Problem of Pain
Defining, understanding, and treating chronic and acute pain: adapted from a presentation at the SLE Workshop at Hospital for Special Surgery
Barbara Wukovits, RN BSN BCDirector of Pain ServicesDepartment of AnesthesiologyHospital for Special Surgery
Introduction
Pain is conceptualized to be a response to an injury or a marker of illness. It is a very complex problem because it embraces physical, emotional, and social components. It is a mechanism in which the body tells us that something is wrong.
While for many people pain is a persistent daily challenge to treat and cope with, the science of understanding pain is rapidly developing. This is an exciting time to be working in the field of Pain Management. In the last ten years, a wealth of information has emerged through research and patient experience. As we learn through scientific investigation about how pain originates and how it progresses, we will better understand how to relieve it.
In this presentation, we will:
- Review some terminology related to pain. It’s important that when one clinician talks to another we share a similar language – this helps us to communicate about pain.
- Discuss the clinical differences between acute and chronic pain.
- Outline some treatment options.
- Mention some of the scientific advances in the field of pain management.
What is Pain?
Dr. Harold Merskey, a professor of psychiatry, defines pain as “…an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.”[1]
This is a very scientific way to talk about pain, because it focuses on tissue injury. That is easy to understand. Yet, we know that there is also a powerful emotional aspect to pain.
In 1968, Margo McCaffery, a nurse and pain educator, defined pain as “…whatever the experiencing person says it is, existing whenever he/she says it does.”[2]In other words, pain is personal. You, the person experiencing it, define it. Pain is what it is to you; it is your experience. A report from the patient is the single most reliable indicator of pain.[3] So, tell your healthcare provider how you are feeling.
Basic Pain Terms
Nociceptive – pain that results from acute tissue injury. It is divided into two classifications: somatic and visceral. Somatic pain is best understood as pain of the musculoskeletal system and is described as pounding, throbbing, and well localized - affecting an isolated area. An example is a cut or a sprain. Visceral pain originates in an organ. It is not localized and can be experienced somewhere other than the source, being diffuse in presentation. An example is pain from a kidney stone.
Neuropathic – nerve injury or dysfunction affecting the central or peripheral parts of the nervous system involved in bodily feeling (the somatosensory system). It is often described as a burning, stabbing, tingling, electrical, or pins-and-needles type of feeling. It is most frequently used when describing a chronic pain condition.
Breakthrough – episodic pain. It’s an acute, sudden break in relief from pain medication, which spikes and then returns to “normal”. The term came from cancer pain literature, going from a “steady state” (when medicated) and then having a spike.
Referred – pain felt at a site other than where injury occurs; e.g., pain from the pancreas that can be felt in the back.
Psychogenic – associated with psychological factors. There isn’t a definable source, but there are multiple causes. An example is a headache, which could come from not having coffee, as well as stress, low magnesium level, etc. It’s not rooted in one physical problem.
Classifications of Pain
Acute Pain is limited in duration. This type of pain has a defined time period in which it occurs, and it presentation matches the pathology (i.e., it has an identifiable cause).
Chronic Pain is now becoming known as “persistent pain.” It lasts well beyond the cycle of what pain should be, with a duration of over six months. The pain may not match the pathology (e.g., when the back is causing the problem when a patient presents with a knee problem). It might be intermittent – persistent but not constant, coming and going (e.g., migraine headaches). It is associated with other symptoms.
Treating Pain
There are a variety of ways to treat pain, depending upon the symptoms. The following are some general treatment strategies.
Acute pain is treated with opioids/NSAIDS (non-steroidal anti-inflammatory medications). Note that the term “opioids” is now used instead of “narcotics” because it’s more scientifically accurate. Patients with persistent or chronic pain may also be prescribed NSAIDS and opioids, but antidepressants & anticonvulsants are commonly added.
Remember – no drug is completely harmless! Check with your prescriber before taking any new medication.
Pharmacologic Treatments
- Acetaminophen (Tylenol®): for some people, this is a wonder drug. However, it can be a problem to use regularly if taken in large amounts. The current recommended dose should not exceed 4g/day or 4000mg/day. However, this recommendation is under review by the FDA and will likely be changed to a maximum of 3000mg/day. Recent guidelines by the American Geriatric Society warn people about the use of acetaminophen, particularly in patients who have problems with their liver. For elderly patients and those with liver disease, the maximum will likely be lower than 3000mg/day.
Many medications combine acetaminophen with an opioid, like percocet. The most frequent dose of this medication contains 325mg of acetaminophen. So, if you are taking an opioid like percocet (5/325), pay attention to the total amount that you take in a day (six tablets will equal 3900mg of acetaminophen – which is now considered a high dose). If you are taking extra strength Tylenol® that contains 500mg of acetaminophen, it is recommended that you do not take more than six tablets per day. If you are taking a lot of acetaminophen, by itself or in a combination pill, you should ask your physician what the maximum should be in your case.
- Non-steroidal anti-inflammatory drugs (NSAIDS) include COX-2 selective drugs, such as Celebrex. When you have an injury, the way your body responds is to inflame the surrounding tissue to stimulate the healing process. These drugs attack that inflammation and diminish its effects while still allowing the process to continue. NSAIDS can be over-the-counter (e.g., alleve/advil/motrin) or be given in prescription strengths. Side effects, especially in older populations, include ulcerations and bleeding. It is recommended that you can take a medication like Pepcid or Prilosec to coat your stomach lining while taking NSAIDS. If you have a bleeding disorder or GI (gastrointestinal) problems, consult your prescriber before using any NSAIDS.
NSAIDS work well for acute pain. Besides pill form, they also come in patches, creams, or gels. Note that if you use the cream, don’t combine it with the pills – it’s the same effect but cream works more slowly. The only difference is the routing administration.
- Analgesics – oral opioids. These include drugs like Percocet, Vicodin, Norco, and Tramadol. Once you take them, they begin to work in about 30 to 45 minutes. Opioids can be associated with constipation, even with limited use. If you are taking opioids for pain, ask your prescriber about how to best treat constipation. They might recommend drinking a lot of fluid, eating fruits and vegetables, or starting a bowel regime. Avoid bulk formers such as Metamucil, as this can make your constipation worse. Just a side note on two old opioids - the FDA recalled Darvon and Darvocet; they are off the market. Demerol leaves metabolites that are dangerous and can make you ill, and is rarely used anymore.
- Anticonvulsants & Antidepressants. Medications in this classification can be helpful additions to a pain regime. They can help reduce anxiety and depression that can occur because of a pain condition. Many of these medications also seem to help reduce the intensity of pain, particularly nerve pain. Examples of these medications are Cymbalta (antidepressant) and Lyrica (anticonvulsant).
- Corticosteroids are given via intra-articular injections (e.g., Cortisone) or orally (e.g., Prednisone).
- DMARDS (Disease-modifying anti-rheumatic drugs) were developed for rheumatoid arthritis (e.g., Cytoxan, Plaqueni).
- Nutraceuticals - A food or part of a food that allegedly provides medicinal or health benefits, including the prevention and treatment of disease. A nutraceutical may be a naturally nutrient-rich or medicinally active food, such as garlic or soybeans, or it may be a specific component of a food, such as the omega-3 fish oil that can be derived from salmon and other cold-water fish.[4] These agents are commonly used today although their risk/benefits as a classification of pharmacologic treatment remains unclear.
Benefits and Risks of these Medications
- Opioids
- Benefits: Opioids are very good for acute pain. These medications come in many formulations, including injections, sprays, pills, patches, and suppositories. In other words, if you can’t get a pill down, there are options. Opioids are used for moderate to severe pain. Also, they are shown to help reduce the degree of pain intensity and improve physical function. So they don’t eradicate the underlying problem, but they do allow you to gain some control over your symptoms.
- Risks: The #1 side effect of opioids is constipation. You will need to take something (e.g., a stool softener), particularly as you get older. Other effects include sedation, nausea (your doctor will often give something prophylactically to settle your stomach); slowed thinking (making you less sharp); and increased tolerance to the medication. Note that tolerance does not mean that you will become addicted; addiction hinges on craving, while tolerance does not. Be sure to tell your doctor what you’re taking and how often you are taking it so your dosage can be adjusted accordingly.
- NSAIDS
- Benefits: Non-steroidal anti-inflammatory drugs relieve pain and inflammation, but they will not help you heal.
- Risks: They do not affect the course of the disease. They can cause ulcers and bleeding.
- Pharmacology
- Corticosteroids risk: Long term use can reduce your body’s ability to use calcium to build bones, which could promote osteoporosis.
- DMARDS risk: These work slowly and can suppress the immune system.
- Nutraceuticals risks: Always tell your doctor if you are intending to use these (including rose hips, fish oil, etc.), as they are not regulated and can interact negatively with other medications.
General medication tips:
- If your medication has no apparent effect, talk to your health care provider.
- If you are having side effects from the medication, talk to your health care provider.
- Consider the schedule – you may need to take it at night instead of noon, etc.
- Consider changing the dose/frequency – this can change as your body responds.
- Consider trying another medication in the same class.
- Combining two types of agents can help (i.e., opioid + non-steroidal).
- Consult with your health care provider before stopping your medications.
- Keep your medications is a safe place, clearly marked
- Remember the medication ordered is for you. Don’t share it with another person.
Non-pharmacologic options
Your body is like a walking pharmacy. You have chemical agents in your body that, when stimulated with activity, produce a healing effect. Options include, but are not limited to, meditation, supportive therapy, acupuncture, exercise (which releases endorphins in the body), andTENS (transcutaneous electrical nerve stimulation). TENS uses a portable device which sends electrical signals to the nerve fibers leading to the brain, which then releases natural pain-relieving substances.
Also, assistive devices increase safety, decrease stress on joints, compensate for unstable or weak joints, and increase independence. These help you by taking stress off the body.
Options for Acute Pain Relief
The main objective when relieving severe pain is the use of multimodal analgesia, which refers to a combination of solutions for pain relief; these include pharmacological and non-pharmacological sources.
- Use thermal therapy – applying hot and cold compresses. If you’re running and your joints are hurting, use ice. If you have arthritic pain and bones are hurting, consider using heat.
- Nerve blocks, performed by anesthesiologists, can numb your elbow by applying anesthetics.
- Physical therapy
- Assisted devices
Recent Developments in Understanding Chronic Pain
- Biological studies have given us insights into the neurotransmitter system (chemical messengers that pass nerve signals). Old theories about how pain signals travel through the body are being modified. Recent findings have shown that the pain pathways are more complicated and are effected by many different types of stimulation.
- Neurobiologic studies through MRI imaging are looking into pain and emotion. They have been able to visually identify pain in the brain and emotional responses to pain. So, when someone says the pain is in your head – well, it literally is.
- Psychosocial research shows that your feelings about your pain are more important in many ways than what caused the pain. How you respond is important. A lot of literature shows that support groups and individual responses matter.
- Chronic pain research has shown numerous things:
- Smokers tend to be more sensitive to painful stimuli.
- Smokers are more prone to depression.
- Individuals exposed to nicotine are at increased risk to develop back pain and other pain related problems.
- Behavior impacts on pain.
What does this all mean?
Today we have a much better appreciation of the mind-body connection and how it effects pain. They work together to help us respond and cope with pain.
As we learn more, we work with patients to offer insight into painful conditions and how to deal with them. With greater utilization of both pharmacology and non-pharmacologic treatment, there are more pain management therapy options for patients than ever before.
So, the best things you can do to improve your own ability to understand and manage pain is to stay connected, stay educated, and ask questions. We will do our best to help find the answers.
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Complementary and Alternative Therapies for Pain
Adapted from a talk at The SLE Workshop at Hospital for Special Surgery June 16, 2004
Maureen McSweeney, PhD HSS Integrative Care Center Faculty & Staff
- Introduction
- Defining Complementary and Alternative
- Defining Pain
- Simple pain conditions vs. lupus pain
- Complementary and Alternative Therapies for Pain
- Closing Thoughts
Introduction
When pain is discussed, medications are often brought forth as the primary means of management. The focus of Dr. McSweeney’s presentation to the SLE Workshop honors the contribution of traditional medical approaches to pain management, while offering information on complementary and alternative therapies for pain. Many people with lupus have discussed medical treatments for pain with their doctors. For a variety of reasons, they may want to explore what non-pharmaceutical options exist. This is an opportunity to learn about what can be done that has the potential to offer additional relief.
Defining Complementary and Alternative
Although the therapies presented here are grouped together as both complementary and alternative, it is more accurate to say that they are complementary. It is not advisable to replace a prescribed regimen of medication, especially without consulting a doctor. Instead, complementary therapies can be added to a pain management plan in order to provide an extra measure of relief. At times, people are able to reduce the dose of their medications due to the added effects. Another benefit is the ability to proactively do something on one’s own to assist with the plan laid out by the doctors. It can be helpful to know that there are methods other than medication that can be effective.
Defining Pain
When discussing pain in lupus, it is important to look at the whole picture created by lupus. Many members of The SLE Workshop have identified pain as one of the major components of their lupus. Because pain plays such a major role for so many people, it is important that people with lupus have a variety of tools for managing pain.
Simple pain conditions vs. lupus pain:
With a simple pain condition, such as banging your finger, there is a source you can identify. There is also a clear course of action that resolves the pain. Pain experienced with lupus is different. It is part of the systemic condition and is not as easily resolved. To deal with the pain, the cause of the pain may not always be addressed, but rather the ways the body expresses the pain, such as inflammation. Interventions such as anti-inflammatory medications reduce the pain, even if they don’t change the lupus itself.
Stress can also contribute to pain. This is the point where most complementary treatments can be of assistance. Even though the cause of the pain itself is not being directly addressed, reducing stress can often help to reduce pain, or at least help to deal more effectively with the pain.
Another point where pain can be addressed is with the immune system imbalance. Prednisone, for example, works to decrease the activity of an overactive immune system. Some complementary therapies aim to assist with immune system imbalance.
This does not mean that complementary therapies are a cure for lupus, and that’s not the case. Some therapies can, however, have an impact on the immune system.
Complementary and Alternative Therapies for Pain
There are five categories. Some therapies cross over the categories.
1. Mind-Body: techniques for using your thoughts to have an impact on your body. Also, body therapies that target how the use of the body can have an impact on your emotions. Generally you can learn these and then do them yourself.
Examples of mind-body therapies:
- Abdominal breathing is a simple technique to calm yourself down, open up the lungs, and get more oxygen into the body. This is done by taking deep breaths, initiating from the abdominals, holding the breath for a moment and then releasing.
- Relaxation training is learning how to relax the muscles of the body by talking yourself through letting go of tension in the muscle groups of the body.
- Guided imagery can be used for lots of different health conditions. This involves the process of mentally imaging a calming, relaxing experience which can include releasing pain from the body.
- Self-hypnosis is giving yourself some kind of signal to release the pain, allowing your body to relax more
- Meditation has been practiced for thousands of years. It was developed to deal with all kinds of pain: emotional pain, the pain of dealing with life, the need to find some kind of peace and calm. Physical pain is often connected to emotional pain. Many people find that meditation can help calm their mind in response to pain.
- Biofeedback is done using equipment to give you feedback, or tell you, what’s going on in your body. Relaxation techniques are then used to help the body relax.
Reasons for using Mind Body Therapies:
The Gate Control Theory states that we have pain because there are messages going from the site of pain through the spinal cord to the brain where it registers that you have pain. The brain then signals back to the body. With chronic pain, however, nerves may fire continuously, even though there may not be any increase at a pain site. If we can shut off some of the pain messages in the spinal cord going up, or if the brain can actually send out different chemicals such as endorphins, than you can feel less pain and interrupt the chronic pain cycle. It’s not that your lupus condition is getting better and suddenly everything is fine, but that the brain and spinal cord are moderating some of the pain sensation. When practicing a mind body therapy such as guided imagery, your brain is calm and relaxed and therefore not processing, as much pain and you feel better.
2. Alternative treatments. This category is referred to as treatments because you would seek the help of a practitioner.
*Acupuncture can be helpful for pain and can have a beneficial effect on the immune system, but will not stop the lupus. Traditionally, 8-10 treatments are conducted by a practitioner. The treatments begin in a schedule of 2-3 times a week, reducing down to once a week. Acupuncture does not work for everyone. If you are not finding any relief by the 8th session, it’s probably not something that’s going to work for you.
Massage can be helpful and relaxing. It might be helpful to find a practitioner who is aware of lupus. The pressure used by a masseuse may be too great and cause more pain if the practitioner is unaware of the needs of a person with lupus.
3. Movement Therapies. These therapies use physical movement to help with both pain, and with calming the mind. These therapies tend to be very mind body focused. By calming the mind, the body is less sensitive to pain.
Some examples of movement therapies are Tai Chi, Yoga, and Qigong. Qigong may have a balancing effect on the immune system. With the eastern therapies the goal is to achieve balance in the mind-body system. It’s not something that will cure but that can help. It’s a matter of trying the different therapies and coming up with what works for you. Some classes are geared to people who suffer from pain, and one of those would be the best to take. It is also important to keep in mind that movement therapies are active and may not be helpful during a lupus flare.
4. Alternative remedies. These are different substances that you would take:
The Arthritis Foundation has put together a useful supplement guide. See also their information regarding this on their website, www.arthritis.org. Two of the most popular supplements for lupus are fish oil (omega 3 fatty acid) which targets inflammation, and DHEA, which has been thought to be helpful for lupus, but there are still some concerns about the side effects. It is a hormone. The ones at the health store are too low in dosage to make a difference, so if you’re serious about trying DHEA, you would want to talk to a doctor who could prescribe it at a higher dose. Again, you want to be careful about putting hormones into your body.
Homeopathy is a very gentle noninvasive remedy. Individuals report variations in helpfulness. It’s a complicated treatment where a practitioner will spend over an hour assessing your lifestyle and recommend treatments that are personalized. Practitioner visits tend to be expensive, although treatment generally involves very few visits. The remedies themselves are inexpensive.
5. Energy Medicine. These therapies address the energy fields of the body.
Reiki is similar to therapeutic touch where you barely touch a person in order to balance out the energy field on the body, smoothing out the energy. It can be very calming and can target specific points on the body such as the throat or the abdomen.
Aroma Therapy: Some people say it works on the energy system, others think it responds to specific sensory receptors. Aromatherapy may help decrease pain by promoting relaxation. Too many or too strong scents can be overwhelming and not helpful. Some scents are over stimulating. Lavender, chamomile, and peppermint are calming, which is the goal.
If you try a therapy and it’s not for you, then it’s not for you. It’s important to be patient and work on finding the combination that provides you with the greatest relief.
Closing Thoughts
During flare-ups, lupus symptoms should be addressed differently. This includes the use of complementary and alternative therapies. Pain can occur both during and between flare-ups. Strenuous activities should be avoided during a flare. Even something like meditation can be difficult to practice during a flare, since it can be difficult to concentrate. Anything that causes physical or mental stress should be avoided during a flare-up. Therapies marked with an asterisk (*) are considered mild enough to use during a flare, and can help decrease pain at these times. As with any change in lupus treatment plans, pain management or otherwise, it is important to discuss changes with your doctor before they are made.
Source:
A Great Resource For People with Chronic Pain
http://www.inthefaceofpain.com/content/uploads/2011/08/ITFOPResourceGuide.pdf
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