Saturday, November 30, 2013

Happy Holidays~How To Cope With Holiday Stress


Happy Holidays~ Living with a chronic illness can be extremely stressful during the holidays. I am posting an excellent article from The Hospital for Special Surgery, which has a spectacular Rheumatology Department.






Lupus and the Holiday Season: 
How to Cope with Stress


A summary of a presentation given to the SLE Workshop at HSS



Caroline Norris
M.S.W. Intern, Department of Social Work Programs
Hospital for Special Surgery
Stress is a normal part of life. Too much of it, however, can be taxing to the body. The holiday season is a time of additional stress for many people, and it can be even more challenging for people with lupus.
In this presentation to the SLE Workshop, Caroline Norris, M.S.W. Intern and SLE Workshop Coordinator, shared different ways to prevent stress during the holidays, as well as a series of relaxation techniques to alleviate and minimize the impact of stress.
Family relationships, finances, and the physical demands of the holiday season are all common triggers of stress. Holiday festivities mean spending additional time with family, which can heighten relationship issues for some people.
Another common holiday stress trigger is the additional expenses the season brings. There are more pressures to spend money during the holiday season. It can be very difficult to manage the costs of presents, food, and decorations, especially for people on a fixed income.
Ms. Norris also reminded the group of the significant physical demands the holiday season brings. Shopping, decorating, cooking, gift-wrapping, and going to parties can be exhausting.

Planning Ahead

A good way of preventing holiday stress is by planning ahead and prioritizing. This can include creating a schedule of all the different activities and tasks. Careful planning can eliminate the rush of last minute forgotten things to do, which can sap your energy.
Ns. Norris suggested that for people who struggle with fatigue it might be useful to include rest and relaxation in the holiday schedule. Conserving energy and making time for recovery will likely make participation in holiday activities much more enjoyable. This recovery time is also important in terms of pacing yourself and preventing yourself from “crashing”
Another good planning technique is creating a budget. There is so much pressure on people to spend, spend, spend. Planning ahead and creating a budget will eliminate overspending. It is also quite easy to forget that the holiday season is about “presence,” not presents.
Some money-saving tips that Ms. Norris suggested included setting a spending limit when exchanging gifts with loved ones. Another way to save money is to “gift” your talents. For example, if you happen to be low on funds, but you are a good cook, offer to prepare a meal for a busy family member or loved one. This is a great way to save money and simultaneously spend time with those you care about. Ms. Norris also reminded the group not to forget how much thoughtful cards and homemade gifts are always appreciated.
Another important part of planning ahead for the holiday season is to set realistic expectations. Trying to achieve perfection usually leaves little room for enjoyment. Unfortunately, many people have an expectation of the perfect holiday, which is usually something out a movie or television show. In real life, last minute things come up, people arrive late, decorations aren’t perfect, and dinner sometimes gets burned.
The best way for dealing with these unplanned events is to try and find the humor in them. The holiday party where the dog ate the dinner will more likely be remembered and laughed about later than the party where everything was perfect.

Communicating

Ms. Norris shared with the group just how important communication is to surviving the holiday season when living with lupus. An important communication during the holiday season is “saying no.” It can be very difficult to turn down people’s invitations or requests, but sometimes saying yes isn’t the best thing to do.
When you have limited time and energy, participating in certain events or doing certain tasks can prevent you from doing what you really care about. The best way to say no is to do it respectfully and, if comfortable, to practice full disclosure.
Many people with lupus struggle with the unpredictable nature of the illness, they may be concerned about making plans or commitments and then having to back out. Ask the host of a party ahead of time if it will be problem if you have to back out at the last minute or if it would be all right if you left early.

Practicing the 4 A’s

In dealing with stress, Ms. Norris suggests practicing what is commonly known as the 4 A’s: Avoid, Alter, Accept and Adapt.
Avoid: Avoid the people and things that upset you or cause too much stress. One way of practicing avoidance is by saying no.
Alter: If you find that the normal holiday season routine is too fatiguing, alter your expectations. If loved ones aren’t respecting your needs, respectfully ask them to alter their behavior.
Accept: Acceptance is an important part of managing stress. During the holiday season, you may have to accept that you won’t be able to participate in all the activities you would like.
Adapt: One way of avoiding stress is to adapt. Living with lupus often means having to adapt one’s lifestyle or plans; this is true during the holiday season as well.
While the 4 A’s are excellent for managing the holiday season, they are also useful in managing the everyday struggles of a chronic condition like lupus.

Relaxation Techniques

Even with all the planning ahead, a certain amount of stress is unavoidable. Relaxation techniques are a good way of managing periods of increased stress. Regular use of such techniques may even lead to better health.
Breathing exercises are a good way of managing stress and, in general, they are a very useful method of symptom control or release. Ms. Norris led the SLE Workshop members in the “Letting Go of Tension Exercise” from the Relaxation and Stress Reduction Workbookby Martha Davis, Elizabeth Robbins Eshelman, and Matthew McKay.
Participants were asked to sit comfortably in their chair with their feet on the floor, and to close their eyes if they felt comfortable doing so. Then members were directed to breathe deeply into their abdomen, hold the breath in for a second and then to let it out. With each breath in, members said to themselves, “I am breathing in relaxation,” and as they exhaled, “I am breathing out tension.”
Another excellent relaxation technique that Ms. Norris discussed with the group was meditation. The practice of Mindfulness meditation has been very effective in the reduction of stress for people with arthritis and fibromyalgia.
The group also discussed visualization as a relaxation technique. Visualization is a way to use one’s imagination to relax by creating a safe and relaxing place in your mind. Lastly, Ms. Norris reminded the group of the benefits of listening to music and humor as ways of reducing holiday stress. The workshop concluded with many members sharing which music they listened to and how they used humor as a way to relax.

Learn more about the SLE Workshop, a free support and education group held monthly as HSS.

Some other excellent resources on Coping With Stress During The Holidays:









Sunday, July 7, 2013

What does it feel like to have lupus?



What Does It Feel Like To Have Lupus?

by Lupus and Me  
What does it feel like to have lupus/chronic illness? I get this question quite often, and I am sure you all do too. So here goes:


In reality, lupus has a different feeling every day.Sometimes it is joint pain and stiffness. Some days I am confused by simple tasks. Other times I can feel the heavy, pulsating beat of my heart, causing me to be dizzy, exhausted, and worried. My stomach is always upset. My digestive system is in a constant state of confusion. My skin itches and tingles and burns every day, all day long. My head pulsates and pounds, feeling as if it will explode. my mouth and nose are full of sores, making eating and drinking a task of torture. Sometimes I awake in streaks of blood from scratching in my sleep. And on really bad days, I feel all of these things at the same time.


Occasionally, I have difficulty breathing. It is almost as if my lungs can’t fill to capacity, and breathing itself causes excruciating pain. In my head, I ask…”Is it my heart? Do I have a clot?” Those are often very long nights. I ride it out untilit passes.


In a sentence…my body has forgotten how to mechanically run on its own. Each individual part is running independently of the others, in a type of mutiny. As the patient, I try to do my part by learning to adjust and following my doctor’s advice, although I have to say, a healthy amount of denial of my fate has helped me live my life to the fullest.


Along with the tangible comes the intangible, the parts of this disease that cannot be measured in a blood test, yet are very much a part of our lives. I am talking about the fatigue. It is debilitating. Do you remember the required obstacle course you were forced to navigate in gym class? Now imagine every day with an obstacle course laid out before you in the form of daily tasks. Only this time, when you finish it, you are required to repeat it again and again until you go to sleep that night. Or, imagine that the air surrounding your body is made of peanut butter--imagine the energy it would take to just walk--that is the type of fatigue I am talking about.


It is when every nerve ending in your body is pulsating with electrical charges, because it has worked overtime all day. And as ironic as it sounds, for some reason when it is time to retire for the night, your brain has disconnected the messages to your body that says it is time to sleep.


I feel, every day, that I have been given a test of survival. Despite the strength everyone says I have, the sorrow of the abandoned child lives on the surface, at the back of my throat, as a constant reminder of just how vulnerable I am. My world is different from everyone else’s. I am never on solid ground; it is always shifting beneath my feet.There is no cure for lupus. If the numbers become good, it doesn’t mean I am cured or had a misdiagnosis…it just means the wolf is caged, for only a brief period of time, and she will be back.


Flaring


One of the worst symptoms I have had with lupus is a painful sensation in all the nerve endings of my body. It starts at my feet and slowly works its way systemically up, until every part of me, from my toes to the top of my scalp feels as if it is being stuck with needles, and battery acid is running through my bone marrow, bubbling to the surface of my skin in a cold fire. Sometimes I am convinced that somewhere in this vast world, is a replica doll of me being held in the hand of some unfortunate soul I have wronged. My body calls out in the darkness of night for me to listen. The simple act of wearing clothing is a painful endeavor worthy of any medieval torture device known to man. Kissing is out of the question, and hugging is merely a lost memory.


Lupus patients often refer to this disease as “The Wolf” because of its name. But it is also a perfect visual of the characteristics that this disease holds. As with Red Riding Hood, you are neve rcompletely out of the woods and safe. Everyday issues that most people have to address become magnified for us. With every slurred word…with every twinge of pain…with every rapid or slowed heart rate or indigestion, we wonder…is that the wolf lurking and licking at my heels? With the complexities of a disease that lives in all areas of my body, it is helpful for me to give it a face. But along with that face is also a sound, the sound of a Jack-in-the-Box: that constant, slow turning of the handle and that awful tune playing in your head. Even when you are receiving treatment and you start to feel better, your brain never lets go of the thought that the Jack-in-the-Box handle is still slowly turning, and eventually the wolf, dressed like a clown, will pop up again.


Every night when we lay our heads down to sleep, it is as if we are put adrift on a raft, uncertain of where we will be when we wake up. Every morning is different. The only thing that is certain is that things will change, no matter how good we feel. There is a constant state of uneasiness, that you realize is now your constant companion. And then we awaken and do it all again--every single day-- until a cure is found.

~Jenn

Thursday, July 4, 2013

Healthy Gut=Healthy You


Healthy Gut = Healthy You!


Reblogged from http://doccarnahan.blogspot.com/2013/01/healthy-gut-healthy-you.html
There is a microbial zoo living inside you, literally trillions of microscopic organisms―more than 10,000 different kinds of them―all co-existing with each other and you. 

In fact they outnumber you ten to one and ninety percent of the genetic material, (DNA and RNA) in your body is not yours, it belongs to the bacteria that is located mostly in your gut, but some also live on your skin and even in your nose. 

Exactly what those different life forms do has been the subject of some exciting research in recent years, and while a few of these organisms can sometimes wreak havoc with your system, the majority of these little "bugs" are good, helping you digest your food, stay protected from infections, and even keeping your immune system properly regulated to fend off autoimmune diseases like asthma, allergies, and diabetes. 

The community of microbes living on and in your body is unique to you – like your fingerprints – and is now being regarded as a key contributor to your overall health. 

More and more, science is finding that teeny tiny creatures living in your gut are there for a definite purpose. Known as your microbiome, about 100 trillion of these cells populate your body, particularly your intestines and other parts of your digestive system.

Although some of these bacteria can make you sick, the majority are good, and they work together as to aid your digestive system and keep you well. Beneficial bacteria, better known as probiotics, along with a host of other microorganisms, are so crucial to your health that researchers have compared them to "a newly recognized organ." We now know that your microflora influence your: 
  • Immune system function
  • Brain development, mental health, and memory
  • Obesity
  • Genetic expression 
  • Risk of diseases, including autoimmune disease, cancer, diabetes, and autism
According to the featured article in Time Magazine:
"Our surprisingly complex internal ecology has been a hot topic in medicine lately. Initiatives such as the Human Microbiome Project, an extension of the Human Genome Project, have been working tirelessly to probe potential links between the human microbiota and human health, and to construct strategies for manipulating the bacteria so that they work with us rather than against us.
...They've been linked to a range of nasty conditions, including obesity, arthritis, and high cholesterol. Now, two newer areas of research are pushing the field even further, looking at the possible gut bug link to a pair of very different conditions: autism and irritable bowel disease."
Most people, including many physicians, do not realize that 80 percent of your immune system is located in your digestive tract, making a healthy gut a major focal point in your efforts to achieve optimal health. In fact, the root of many health problems is related to an imbalance of intestinal bacteria.   

The beneficial bacteria in your gut has actually been found to help prevent allergies by training your immune system to distinguish between pathogens and non-harmful antigens and respond appropriately – and this may be one reason why they also appear so beneficial in conditions like allergies, asthma, and eczema

 Like it or not, the bugs in your gut have a lot to say about your health!  This is why I frequently test patients gut function for common complaints such as fatigue, migraines, mood disorders, depression, anxiety or insomnia, ecezma, allergies, asthma, autism, and even trouble with concentration & memory.  Getting the gut bugs back into proper balance is critical to your overall health and especially the health of your immune system.  The simplest way to jump start your overall health is pay attention to the gut...  Eliminate sugar and refined flours from your dietand add a high dose probiotic to you regimen.  You'll be well on your way to a happy and helpful intestinal "zoo"!

http://www.health.harvard.edu/healthbeat/the-gut-brain-connection
http://www.mercola.com/
http://www.metametrix.com/test-menu/profiles/gastrointestinal-function/dna-stool-analysis-gi-effects
https://wsunews.wsu.edu/pages/publications.asp?Action=Detail&PublicationID=32253&TypeID=1

Saturday, February 9, 2013

You Know You Have Fibro If:


You know you have fibro if…you’re so exhausted from lying down that you have to go and lie down.
You know you have fibro if…you dream for someone to tell you what to wear, because having to create an outfit yourself makes you weep.
You know you have fibro if…you start to tear up at the thought of the energy necessary to lift your arms above you head and wash your hair.
You know you have fibro if…you lack clean dishes and you start thinking that the 5-second rule is probably more like the 1.5 hour rule.
You know you have fibro if…the fact that you must wake up and experience the air touching your skin causes an existential crisis.
You know you have fibro if…sometimes you wish you couldn’t remember your old life, so you wouldn’t know what you’ve lost.
You know you have fibro if…the only part of you that hasn’t been poked, examined, tested, or diagnosed is the lint in your belly button.
You know you have fibro if…your desire for non-swollen ankles outweighs your horror of donning support hose.
You know you have fibro if…you wonder if you qualify for an emergency government food airlift that lands directly next to your couch.
You know you have fibro if…you’ve been out of touch for so long you think using “fibro” instead of “fibromyalgia” makes you hip and cool.
You know you have fibro if…Sunday night means cozying up with 10,000 pill bottles and a giant box.
You know you have fibro if…you know better than to get too excited at a no-pain day, and you have your pain meds ready at Defcon 1.
You know you have fibro if…you have five doctor’s appointments in five days.
And the 5 doctors are all located in different, neither-close-to-you-nor-close-to-each-other parts of your city.
And then you know you have fibro if…despite your best magical thinking attempts, you find that you don’t actually have the stamina for 5 doctor’s appointments in 5 days.
You know you have fibro if…it takes you an hour to get dressed, but no one gets what a big deal it is that you accomplished it anyway.
You know you have fibro if…when deciding on frozen dinners, having to choose between bone-in and boneless chicken brings you to tears.
You know you have fibro if…Ultram is your boyfriend.
You know you have fibro if…Ultram is your boyfriend AND you are also totallycheating on it with Darvocet.
You know you have fibro if…you love your massage therapist so much that you want to marry her and have her babies.
You know you have fibro if…exhaustion, pain and being beaten down by life is pretty much your middle name. And sometimes your last name too.
You know you have fibro if…despite the picking, scraping buzzing, etc., you are so exhausted that you fall asleep in the dentist’s chair.
You know you have fibro if…you spend so much time alone at home with only the cats that your relationship has devolved to the point where you spend all your time tattling to your husband about the the fact that “they keep looking at me funny!!” and, “they won’t stop touching me!”
You know you have fibro if…you are constantly having to choose between the lesser of two bad side effects.
You know you have fibro if…you have a Ph.D in appreciating the little things in life. And you’re pretty much over it.
You know you have fibro if…there’s only so much “inspiration” you can take before you just have to start stabbing people.
You know you have fibro if…you have an out-of-joint jaw, an 8 fibro pain, and 0 anxiety medication, and your response is, “Hm-must be a day that ends in -day.”
You know you have fibro if…your good intentions cannot only pave the road to all seven circles of hell, but all the roads to at least 75% of the planets as well.
You know you have fibro if…you do everything you’re “supposed” to do, and some days you just have really bad pain anyway.
You know you have fibro if…on those days, you just need to be reminded that this is what having a chronic illness looks like.
You know you have fibro if…no matter what you’re wearing or how you look when it strikes, you have learned to get up and go the moment you feel you can exercise, shop, clean, etc.
You know you have fibro if…suddenly feeling better after a streak of painful days is just as disorienting as suddenly feeling pain after a streak of good days.
You know you have fibro if…wait…what was I saying? And why am I in the kitchen again?
You know you have fibro if…”playing chicken” now means facing off with your illness to see who blinks first: your fibro, in the giving of pain; or you, in the succumbing to the pain and the need to take some very strong painkillers.
You know you have fibro if…you need to lie down from the pain, but the pressure of the bed against your skin makes the pain 100x worse.
You know you have fibro if…you’ve been to at least three new doctors to explore different pain relief methods and the first question they ask you when you tell them you have fibro is, “And how do you know that?”
You know you have fibro if…you’ve undergone so many medical procedures, that when someone needs to share about “the most disgusting thing I’ve ever had to do in my entire life”, you are the person they call.
You know you have fibro if…a part of you sees emergency gallbladder surgery as a kind of vacation from having to deal with your chronic illness.
You know you have fibro if…the hope of magical thinking springs eternal in you.
You know you’ve been in pain for too many days…when you start referring to things like putting on pants as “having to climb Mt. Everest.”
You know you have fibro if…your criteria for deciding whether or not to break open the heavy duty painkillers are things like, “Hm, are my eyelids burning yet?”
You know you have fibro if…instead of numbers, your time-telling devices all have designations like, “Everything Makes Me Weep O’clock”.
You know you’ve been housebound for way to long when, after a brief foray into the sun, you pick up your keys to go back inside and then burn yourself because you’ve forgotten that SUN MAKES METAL *REALLY* HOT.
You know you have fibro if…when showering, you wonder how you could possibly fit a bed in there, or at least a small chair, because you’re too tired to stand up  through the entire thing.
You know you have fibro if…you try your hardest to convince your body that 150mg of Lyrica is the same as 300mg so you can please God!, get some relief from the swelling. But no matter how hard you try, it just won’t work.
You know you have fibro if…sometimes you just NEED the French fries, or, (as I like to call it), “Carbohydrate Therapy”.
You know you have fibro if…your prayers frequently read as follows: Dear God-I’m still not OK with the whole fibromyalgia thing, but I do appreciate the fact that getting a really good haircut does help ease things a bit.
And any math you’re required to do looks like this: French Fries + Coke + Percocet + Mindlessly Surfing The Internet=Truly, Does Life Get Any Better Than This?
You know you have fibro if…you strongly believe that your right to wear jammies all day should be protected by The Constitution.
You know you have fibro if…sometimes you just have to go after what you really want, even though you know you’ll pay for it afterward.
You know you have fibro if…you have a billion frequent flier miles from all the times you have had to visit the State of “Numb With Exhaustion”.
You know you have fibro if…you count your day as a success because you you did NOT vacuum the house while suffering a raging migraine.
You know you have fibro if…you need a pharmacy’s worth of medications just so that your body can do a mere fraction of what healthy people can w/out even having to think about it.
You know you have fibro if…legally speaking, your name should be “Magical Thinking”.
You know you have fibro if…you can no longer wear clothes with zippers, belts, buttons, buckles, snaps, or any other kind of fastening.
You know you have fibro if…no matter how quickly you walk, you inevitably lag at least 2 feet behind the rest of your group.
You know you have fibro if…your husband has begun to refer to all of your attempts at movement as “glacial”.
You know you’ve been in pain for too many days in a row when, even though your rational mind knows that you’ve only pulled a muscle in your chest, the REST of your mind keeps screaming that you actually have walking pneumonia/breast cancer/and/or some fatal, unidentified chest-pain disease.
You know you have fibro if…Dammit! Why do so many of the things I need to do require you to wear pants?
You know you have fibro if… your husband’s frequent reaction to seeing your hair isactual alarm.
You know you have fibro if…you day is made or broken, depending on whether or not NCIS is a rerun.
You know you have fibro if…you watch a commercial for “Pajama Jeans” and thought, “What a great idea!.”  And then you start to think that maybe you haven’t really given the “Snuggie” a fair chance.
You know you have fibro if…you really need summer television to BE HERE ALREADY! so you can start telling the days apart again.
You know you have fibro (fog) if…you pull out of the drive-through window at the bank and then realize you’ve stolen the deposit tube.
You know you have fibro if…the most passion you’ve been able to feel for months is directed at your Kindle and its “1-click purchase” button.
You know you have fibro if…you’ve  just finished a 1-hr. search of the house for something you couldn’t find, and then realized you’d been looking for an item that you’ve  never actually owned.
You know you have fibro if…you’ve ever yelled out, “Hey, God-if I have to navigate the world in a body that moves and feels like lead, then putting on pants should burn AT LEAST A BILLION CALORIES! I’m just sayin’.”
You know you have fibro if…you haven’t  just fallen off the information highway, you’ve crashed into a 15-car pileup, slammed through the guardrails, flipped end-over-end into the gulley, and then fallen down a well.
You know you have fibro if…your pants are never, ever, EVER coming off again, SO HELP YOU GOD, because it has just taken you the last 5 hours to get them on.
You know you have fibro if…you’ve been in so much pain for so long that you’ve lost your mind, and therefore think it is *totally* appropriate to do a workout video that contains the word “Bootcamp” in the title.
From:http://www.jennyryan.com/?page_id=3673

Pain and Rheumatic Disease



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:
  1. 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)
  2. Pain is sign of damage.
  3. Pain means activity should be avoided.
  4. Pain leads to disability.
  5. Pain is uncontrollable.
  6. 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:

• American Pain Foundation (http://www.painfoundation.org/)
• American Pain Society (http://www.ampainsoc.org/)
• PainEDU.org (http://www.painedu.org/)

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.
  1. On a scale of 1 to 10, how much pain are you having - if 10 is the worst pain you've ever had?
  2. What is the pattern of your pain - where does it arise and where does it spreads to?
  3. What is the duration of your pain - how long does it last - and how often does it occur?
  4. 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.
  5. 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.
  6. 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:
  1. the chronic background pain that may be with you frequently or all the time, and
  2. 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

  1. Introduction
  2. Defining Complementary and Alternative
  3. Defining Pain
  4. Simple pain conditions vs. lupus pain
  5. Complementary and Alternative Therapies for Pain
  6. 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 lupusand 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 siteIf 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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