Monday, February 17, 2014

Lupus Journal/Disease Activity Tracker

Please download, print, share my Comprehensive Lupus Journal/Disease Activity Tracker--it is very helpful to fill out and bring to Dr appts..even if you have not been diagnosed yet.

Pain: How To Help Your Doctor Help You

Speaking of 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 Surgery
Clinical 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.


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.


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.


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.


Thursday, July 4, 2013

Healthy Gut=Healthy You

Healthy Gut = Healthy You!

Reblogged from
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"!