Vitamin D And Neuropathy (Vid)

Today's video is from Dr. John Hayes Jr, who is rapidly establishing himself as one of the best neuropathy information givers on the net. Today he talks about the value of Vitamin D in relation to neuropathy.



Episode 14 – Vitamin D
Thursday, June 13th, 2013 Posted by John Hayes Jr

Dr. Hayes talks about Vitamin D, why it’s important for Neuropathy patients, potential sources, and the consequences of both deficiency and overdose.



http://beatingneuropathy.tv/2013/06/episode-14/

Neurostimulation A Good Alternative To Opioids For Neuropathy

Today's post from  the ever informative sciencedaily.com (see link below) talks about neurostimulation as being an effective treatment for neuropathy. Neurostimulation is nothing new and many people will be familiar with various bits of equipment delivering electrical stimulation but for the first time a group of 60 leading pain specialists have got together to present guidelines for the use of neurostimulation with chronic pain. This can only be of benefit to patients who are never quite sure if what they see in the advertisements has any value or not. Definitely worth a read if you're looking for information about non-drug alternatives to pain control.

Neurostimulation Lowers Need for Opioids in Chronic Pain

June 10, 2013 This story is reprinted from materials provided by International Neuromodulation Society, via Newswise.

Recognizing that treatment of chronic pain can be confounding, the Neuromodulation Appropriateness Consensus Committee (NACC), an international group of more than 60 leading pain specialists, has created the first consensus guidelines for the use of neurostimulation in chronic pain.

Neurostimulation is an established and growing area of pain therapy that treats nerves with electrical stimulation rather than drugs. The NACC findings, announced at the International Neuromodulation Society (INS) 11th World Congress, address provider training, patient screening, and treatment recommendations.

While the extent and suffering of chronic pain is becoming better recognized, the danger of opioids for addiction, diversion or misuse is well known. Long-term opioid use can lead to the need for escalating doses to bring relief, and raises the risk of physical dependence, overdose, weight gain, depression, and immune and hormone system dysfunction.

"Many studies contain insufficient evidence to prove the safety or effectiveness of any long-term opioid regimen for chronic pain," said study lead author Dr. Timothy Deer, INS president-elect and director of the Center for Pain Relief in Charleston, W. Va. "Indeed, many patients discontinue long-term opioid therapy due to insufficient pain relief or adverse events."

Neurostimulation has been shown in clinical studies to be safe and effective for properly selected patients, and is approved by the FDA to treat chronic pain of the trunk and limbs. It belongs to a family of therapies known as neuromodulation because they modulate, or alter, the function of nerves, such as nerves that may have become hypersensitized or damaged, or are otherwise sending pain signals long past the initial injury. Since the components of neurostimulators bear some resemblance to heart pacemakers, they are sometimes called pain pacemakers.

The NACC recommends neurostimulation be used earlier in the treatment of some kinds of chronic pain, such as failed back surgery syndrome and complex regional pain syndrome. A study being presented at the world congress shows neurostimulation effectiveness correlates with early use in those conditions, with the added benefit of shortening the time patients spend trying other methods and containing long-term costs of managing chronic pain.

The most common form of neurostimulation, spinal cord stimulation (SCS), was introduced in 1967 and is now implanted in some 4,000 patients annually in the United States. With SCS, appropriately selected patients who have had back and/or leg pain longer than six months often find their symptoms relieved by 50 percent or more. The therapy uses slender electrical leads placed beneath the skin along the spinal cord and connected to a compact pulse generator, about the size of a pocket watch, that sends mild current along the leads to elicit a natural biological response and limit pain messages sent to the brain. Patients try the minimally invasive technique to see if it works for them before receiving a permanent implant.

"The lessons learned over the last few decades of clinical practice have influenced neurostimulator design, placement, and programming -- and added new insights into spinal anatomy and pain physiology," said INS President Dr. Simon Thomson, consultant in in pain medicine and neuromodulation at Basildon and Thurrock University NHS Trust in the United Kingdom.

Although neurostimulation devices may seem novel at first, using electrical current to limit pain dates back to antiquity, when standing on an electric fish was one remedy. Use of modern neurostimulation devices is likely to expand as the aging populace lives longer with chronic conditions, while technological refinements and clinical evidence continue to accumulate.

"A reduction in opioid use among patients treated with spinal cord stimulation was shown in a several studies, notably a 2005 randomized controlled clinical trial led by Dr. Richard North under the auspices of the Johns Hopkins University School of Medicine," commented INS Secretary and study co-author Dr. Marc Russo, director of the Hunter Pain Clinic in New South Wales, Australia. "Broad-based studies show that within two years, using spinal cord stimulation rather than repeat back surgery is not only a more cost-effective use of health resources, it also is correlated with higher rates of return to work."

Consensus committee authors believe that when appropriately applied, neurostimulation to target treatment directly to nerves can improve productivity and quality of life for chronic pain patients, offering a potentially less costly and risky option than repeat surgery or long-term painkiller use. They recommend:

- Neuromodulation providers receive at least 12 hours of continuing medical education per year directly related to improving outcomes with neuromodulation, with additional mentoring by a credentialed provider at a hospital officially accredited by the Joint Commission on Accreditation of Healthcare Organizations or its equivalent.

-- Spinal cord stimulation should be used early in the treatment of failed back surgery syndrome as long as there is no progression of a neurological condition requiring semi-urgent intervention.

-- Patient selection decisions should be made with any clinicians who are treating co-existing conditions, who may include the patient's primary care provider, cardiologist, or neurologist.

-- Due to the emotional impact of the experience of pain, an assessment of a psychologist or psychiatrist is recommended within the first year of implant.

-- Spinal cord stimulation and peripheral nerve stimulation should be considered earlier, when possible, and are recommended to be trialed in the first two years of chronic pain.

-- Peripheral nerve stimulation (beyond the spine) should be reserved for patients in whom the pain distribution is primarily in a named nerve that is known to connect the area of pain. Temporary relief of the patients' pain by an injection of local anesthetic in the nerve distribution should be seen as an encouraging sign for the use of this therapy.

-- To cover an area that is not located in the distribution of a named peripheral nerve, stimulation of a peripheral nerve field with electrodes placed in the subcutaneous area just beneath the skin may give relief if stimulation from SCS does not reach this area. In many cases a hybrid of two or more of these methods may present the best chance of an acceptable outcome.

-- SCS should be used as an early intervention in patients with Raynaud's syndrome and other painful ischemic vascular disorders, which involve insufficient blood supply to part of the body. If ischemic symptoms persist despite initial surgical or reasonable medical treatment, SCS should be trialed.

-- In the use of spinal cord stimulation to treat painful diabetic peripheral neuropathy, decision-making should be performed on an individualized basis, considering current diagnoses and other factors. A type of SCS that stimulates a structure at the edge of the spinal column, the dorsal root ganglion, may be most suited for this disorder.

http://www.sciencedaily.com/releases/2013/06/130610084019.htm

Patients' Health Affected By Cuts In Neuropathy Diagnosis Funds

Today's post from mmnforum.com (see link below) looks at the results of the current financial cuts in services for patients around the world. In the case of neuropathy, cuts in the USA have meant that standard diagnostic tools such as EMGs and nerve conduction studies have become too expensive for organisations such as medicare to reimburse, leading to complete lack of diagnosis in some cases. If your doctor or specialist is alert, he or she will immediately recognise the symptoms of many forms of neuropathy but certain specialised forms may not be diagnosed, leading to the wrong treatment and unnecessary suffering for the patient. It's hardly credible that a patient should be the victim of financial mismanagement on a national scale but that's the reality facing many neuropathy sufferers across the world.

Neuropathy Diagnosis Obstacles Damaging to Patients' Health
May 16, 2013

For National Neuropathy Awareness Week (May 13-17), The Neuropathy Association and the Hereditary Neuropathy Foundation Call Attention to the Diagnostic Challenges Hurting Millions of Neuropathy Patients.

Continued lack of peripheral neuropathy awareness combined with Medicare reimbursement cuts for diagnostic tools are causing major impediments to neuropathy epidemic prevention, patient care, and treatments according to The Neuropathy Association and the Hereditary Neuropathy Foundation. The two organizations are using national Neuropathy Awareness Week (May 13-17) to highlight the diagnostic challenges facing patients with all forms of peripheral neuropathy, which have no disease-modifying treatments or cures. Early and appropriate neuropathy diagnosis is key to prevention and providing symptom management to restore quality of life and stem neuropathy's progression.

"Without appropriate diagnostic tools,
neuropathy patients face years of
misdiagnosis and possible
mistreatment while irreparable
nerve damage continues."

Peripheral neuropathy, or “peripheral nerve damage,” impacts well over 20 million Americans (at least 1 in 15), making it one of the most common chronic diseases and a leading cause of adult disability. Neuropathy disrupts the body’s ability to communicate with its muscles, organs, and tissues. Charcot-Marie-Tooth (CMT), a hereditary group of neurodegenerative conditions degrading the nerves in the hands, arms, feet, and legs with crippling results, usually begins in childhood and impacts over 150,000 Americans.

Of the over 100 known types of neuropathy, diabetic neuropathy represents over a third of all neuropathies, making diabetes the leading cause. A third of neuropathies are “idiopathic” (unknown cause). Other neuropathies include hereditary, autoimmune-related, cancer or chemotherapy-related, entrapment or trauma-related, and neuropathies due to causes such as toxin-induced, nutritional deficiencies, gastro-intestinal disorders, metabolic diseases, or infectious diseases (including Lyme and HIV/AIDS).

Despite neuropathy’s prevalence, lack of awareness and a greater understanding of neuropathy’s complexities by the public as well as health care practitioners cause most patients to encounter time delays and a high probability of misdiagnosis and mistreatment before reaching a confirmed neuropathy diagnosis. A 2012 poll by The Neuropathy Association showed patients face a timeline between symptom onset and actual diagnosis lasting five or more years for almost a third (29.4.5%) of patients polled, a period of time during which irreparable nerve damage continued and access to appropriate care was impeded.

Because there are no cures, accurate diagnosis guides treatment path by assessing causes and nerve involvement; early diagnosis may be preventative. Needle electromyography tests (EMG) and nerve conduction studies (NCS) are neuropathy’s primary diagnostic tools, which can lead to genetic testing especially in cases of CMT. However, beginning January 1, 2013, Medicare reimbursement payments to physicians for EMGs and nerve conduction studies (NCS) were severely reduced by 30%-70%.

“This current diagnostic environment is a crisis unlike any we have ever known before—and is about to get worse,” shares Tina Tockarshewsky, president and CEO of The Neuropathy Association. “Neuromuscular physicians are specialists who are trained in diseases like the peripheral neuropathies. As a result of the recent Medicare cuts, The Neuropathy Association is hearing that neuromuscular physicians—specialists who work with neuropathy patients—are facing difficulties in practicing neuromuscular medicine, and have begun to stop seeing Medicare patients”

“Without increasing awareness and removing impediments to care, early diagnoses will be reduced and misdiagnoses will increase,” concurs Allison Moore, CEO of the Hereditary Neuropathy Foundation. “Most health care practitioners do not have a basic understanding of the scope of the neuropathies, the diagnostic tools available, and the treatment protocols dependent on the type of neuropathy. Although it took years for me to get the diagnosis of CMT, once I did, it changed my own path of care—and, it enabled me to get appropriate testing done early for my own children to promote their health and well-being.”

May 13 - 17 is the ninth annual Neuropathy Awareness Week, an event launched by The Neuropathy Association to promote greater attention to and prevention of this growing national epidemic. With early diagnosis, neuropathy can often be controlled and quality of life restored. If ignored, symptoms can intensify to loss of sensation, weakness, unremitting pain, and/or disability.

About The Neuropathy Association

Founded in 1995, The Neuropathy Association is the leading national nonprofit organization providing neuropathy patient support, education, advocacy, and the promotion of research into the causes of and cures for all forms of peripheral neuropathy through its nationwide network of members, regional chapters, 15 medical Centers of Excellence, and 150 patient support groups. For more information, visit http://www.neuropathy.org.

About the Hereditary Neuropathy Foundation

Founded in 2001, the Hereditary Neuropathy Foundation is the leading national organization dedicated to finding treatments that will halt, reverse and cure Charcot-Marie-Tooth (CMT) through their Therapeutic Research in Accelerated Discovery (TRIAD) program, an innovative model that brings together academia, government, and industry. The collaborative translational model ensures the sharing of information among hand-picked partners that have one goal in mind: cure CMT. For more information, visit http://www.hnf-cure.org or our Facebook page.

http://www.mmnforum.com/forum/topic/957

To Cane Or Not To Cane For Neuropathy?

Today's article from neuropathy.org (see link below) examines a problem that many people living with long-term neuropathy eventually have to face and that is whether to take advantage of walking aids like canes. It's very often a matter of pride. You don't want to be seen needing a walking cane and you put it off as long as possible while running the constant risk of misstepping or losing your balance. Most people who invest in a cane see the benefits immediately. It's like having a third leg that helps to stabilise you whilst walking and before you know it you forget that people may be looking at you differently. Certainly the benefits can outweigh what you may see as stigma.

Coming Around to Using a Cane
By Elizabeth Byleen June 2013

"The amazing thing about the cane is that it is teaching me to walk differently. With the cane, I have loosened up. My stride has become longer and more relaxed. It takes less effort to walk, so I walk more. I have become physically stronger. This new strength and my more relaxed gait carry over even when I’m not using the cane."

Support Your #1 Cause: The Fight
Against Neuropathy!

My inherited peripheral neuropathy has me walking in my father’s footsteps. Just like him, it’s difficult to stay on my half of the sidewalk. In fact, as I walk to work, many people don’t pass me on the sidewalk, but walk out in the street around me. My gait is unpredictable; I wobble and weave, and my balance is a problem. My proprioception (or perception of knowing where I am in space) is off, especially when I’m in low light. But just like my dad, I keep moving. I’m ambulatory, and that feels great.

Several years ago, when I lost my balance and fell in my bedroom— pushing my hand through a glass window and bruising my face on the nightstand—a friend suggested I use a cane at night. “Oh, not me! Not even in the privacy of my own home,” I said to myself. A few years later, when my doctor suggested a cane, I was insulted, even though I careened off a wall as I left his office. A cane was a symbol of giving up and admitting defeat. I was in my early fifties, and not willing to send out that message.

The summer after my doctor suggested a cane, I stopped in to visit with my 90-year old neighbor, Hazel, who was sitting on her front porch. Rather exhausted after a long walk, I shared with Hazel that I was discouraged by how I walked; in fact, two people along the way had asked me if I was okay. She offered to let me borrow one of her canes for a while and see how it worked for me. Out of politeness, I said I would.

On the short walk home, even though the cane was not the correct height, I noticed immediately how helpful it was. I didn’t lean into it, but with just a light touch, I got more feedback about where I was, making it much easier to navigate. That week, my daughter and I took long walks in the evenings. I walked straighter and taller. I was more confident, and I didn’t obsess about every crack in the sidewalk that might trip me up.

The amazing thing about the cane is that it is teaching me to walk differently. Because of the fear of falling, the fear of running into people, and the fear of being perceived as drunk or somehow not quite right, over the years I had developed a real tightness to my walk. I tensed everything up: my mind, my shoulders, my arms, my hips, and my legs. With the cane, I have loosened up. My stride has become longer and more relaxed. It takes less effort to walk, so I walk more. I have become physically stronger. This new strength and my more relaxed gait carry over even when I’m not using the cane.

Our resistance can be so fierce. While I once thought a cane was only a symbol of my decline, it’s proving to be a very helpful tool, especially in crowds, unfamiliar places, and over long distances. Having that extra point of contact—basically acting as a tripod—provides me much more stability. An unexpected benefit is that my cane sends a quick visual signal to others to give me more space and time to maneuver. I had to overcome incredible resistance to eventually arrive at something that works so well for me.

http://www.neuropathy.org/site/News2?page=NewsArticle&id=8393

Reasons Why Patients Should Join In With Social Media

Today's post from kevinmd.com (see link below) looks at the possibility of blogging for people living with chronic health issues. This blog also started for many of the same reasons described below and has grown into a large source of information for other neuropathy patients. I have learned so much from doing it and it has certainly provided a daily purpose in life to distract me from the ever-present neuropathy. Why not read Kevin Campbell's article and give it a go yourself - social media is not always intrusive; it can be very therapeutic as well.

4 reasons why patients should blog
KEVIN R. CAMPBELL, MD  JUNE 3, 2013

Social media has opened a whole new world for patients. Now, information about disease is readily accessible and available to everyone. Certainly, there are issues with reliability and accuracy of internet sources and this can create uneasiness and misunderstanding for both physician and patient.

However, the internet can also provide many new therapeutic possibilities. In particular, online support groups, twitter chats and blogging can provide a positive outlet for patients suffering with disease. Today, I want to focus on one of these Internet opportunities: the patient blog. Recently, a online article on iHealth Beat explored this concept of patient blogging and its benefits.

Just as commonly experienced in the climax and resolution phase of Greek tragedy, writing a blog about one’s experience as a patient can be cathartic. Patients with chronic illnesses or with a new diagnosis are often confused, frightened and angry. Numerous studies in the psychiatry literature have demonstrated that journaling or writing about one’s feelings and experiences can have a very positive effect on emotional health. Journaling has been shown to have several other unexpected benefits as well. In the age of the Internet and social media, journaling is now called blogging. Blogging can be a private posting (where only you or those you approve can see) or can be made public for anyone to see.

Blogging can have many benefits that are very similar to journaling. From a pure neuro-biological standpoint, while you are occupied with writing, the analytical left brain is engaged in the writing process. This allows the right brain to be free to feel, emote and create. In this setting, you are able to better understand yourself and the world around you. Specifically, there are four distinct benefits that patients can receive from blogging that I believe are worth mentioning:

1. Blogging helps to clarify thoughts and feelings. Often writing down our feelings provides a way for us to better organize our thoughts. Blogging can help patients with terminal illnesses better understand their disease and how they are reacting or adjusting to the challenges of the diagnosis and/or therapy.

2. Blogging helps you to get to know yourself better. Writing routinely will help you better understand what makes you happy and content. Conversely, writing will also help you better understand what people and situations upset you. This can be incredibly important when battling chronic disease. It is important that you are able to spend more time doing the things that make you happy and are able to identify and avoid things that are upsetting.

3. Blogging helps you to reduce stress. Patients who receive a diagnosis of a major illness or who suffer daily with the challenges of chronic disease often have a great deal of anger and resentment. It is human nature to ask questions such as “why me?”. Blogging about angry feelings can be a positive and therapeutic release of emotion. It allows for the writer to return from the blog more centered and better equipped to deal with negative emotion

4. Blogging helps unlock your creativity. Often we approach problem solving from a purely left brain analytical perspective. This is how we are taught throughout our education to attack problems in math and science in school. However, some problems are only solved through creativity and through the use of a more right brain approach. Writing allows the right brain to creatively attack problems while the analytical side of the brain is occupied with the mechanics of the writing process.

I believe that blogging can be just as important as medication compliance in patients with chronic disease. The diagnosis of a chronic disease can produce a great deal of stress and emotional angst. Patients who are able to deal with negative feelings and emotions in a more positive way are better suited to tackling their health problems.

As mentioned above, blogging has many benefits on our emotional health. By dealing with negative emotions and unlocking creativity, we are better able to deal with the realities of chronic disease and more effectively interact with friends and loved ones. I encourage everyone–patient, physician, family member or friend–to begin to blog. I expect that the health benefits of writing will be well worth the time in front of the computer screen and the insights that you may discover about yourself may be be life changing.

Kevin R. Campbell is a cardiac electrophysiologist who blogs at his self-titled site, Dr. Kevin R. Campbell, MD.

http://www.kevinmd.com/blog/2013/06/4-reasons-patients-blog.html

Chronic Illness And Exercise

Today's post from myneuropathyandme.blogspot.com (see link below) is written by the same author as yesterday's post and talks about the difficulties neuropathy patients face when they are told they need to exercise. It tells of her own personal experiences with exercise and gives some very sensible tips on how to set about it. We know we have to exercise but we also know our body is going to give us hell for doing it, so the trick is to find easier ways of exercising without putting too much stress on our feet, legs, arms or wherever the neuropathy is most evident.

Exercising with a Chronic Illness
Posted by Tracy Love Thursday, June 6, 2013

Everyone who is suffering with a chronic illness or even pain has heard the doctor say that exercise is good; in fact, most of us knew that, even before the doctor told us that we need to exercise. Before I was so lucky to be diagnosed with Small Fiber Neuropathy, I exercised six days a week for at least an hour a day. I was extremely active and loved being in the Phoenix sun, even when it was 110 degrees outside, I could find an exercise I could do to keep me moving. From walking, hiking the Phoenix Mountains, water aerobics, training for marathons, biking, whatever it was, I loved it. I began working out in 2006 when I joined Weight Watchers to lose 170lbs. I did a lot of exercising a loved every minute of it.

Having Small Fiber Neuropathy and all the different drug trials and fails has put weight back on my body. I cried for the first six months as I got on the scale. I worked so hard to lose the weight, now I was watching it creep back on. But, my sweet husband told me not to worry that one day I will get back there, but my health was more important than a size 10 jean. Then he said "I love you." I think I'll keep this man :-)

Doctors tell us that we need to exercise to improve our heath, I will agree, but it’s not the wanting to exercise, it’s the inability to handle the pain the exercise puts on our chronically ill bodies that matters. I have found over the past year a solution. I think just walking is enough? Like, walking through the aisles at the grocery stores, the malls, parking lots, doing everyday chores such as laundry, sweeping and mopping floors, and cleaning bathrooms. To me this is enough to get my heart racing. Not as much as when I was training for half marathons, but at least my body is moving. But if you want to start exercising, I say start slow. Start with ten minutes a day and work your way up to thirty minutes a day. If ten is too much, break it into six five minute intervals. We all know that exercising will most likely hurt tomorrow, but we are always hurting tomorrow, and I know I am we willing get my body moving again.

There is an article on exercising and nerve pain that states "For many of us, exercise hurts. We often equate athletics with muscle aches, stomach cramps, sore knees, and tired lungs. But, for those with neuropathic pain, exercise can offer a rare refuge from agonizing discomfort." Click here for article

Now that the weather is warmer and my pool has heated up enough, I got back in to workout by doing water aerobics. I love working out in the pool. The water is cool enough so I don’t sweat and overheat and my muscles and joints aren't paying the price like the pounding pavement. Did you know that jogging in the pool is twelve times more the resistance as walking on land? And it doesn’t hurt while doing it. Yes, sometimes it does hurt the next day, but I love exercising in the pool. I can do a 30 minute workout in the cool water and I burn up as many calories as walking 30 minutes in the hot sun.

There are times though that I have to give my body a little pep talk. “Ok, body, we’re going out there and we’re going to give it our all. Yes, you’ll feel some pain, maybe while working out, maybe it won’t happen until later or even tomorrow, but we’re going to move today, so let's not be lazy, let's get moving!” I am tired of this disease having all the control. There is nothing I have experienced in my life that is more aggravating than telling my body to do something and it only does it half way. I now use a shower chair to take showers because it hurts to stand and I get dizzy while showering. There’s nothing scarier than thinking I’m going to get dizzy, fall down in the shower and having the fire department come rescue me. If I weighed 60lbs less, I wouldn’t worry too much HA! So the shower chair helps alleviate any of those nightmares. Trying to even wash my hair brings on added pain in my hands and arms. I wonder how many calories I burn from doing this. And can I count it as moving?

I can’t say what exercise is right for your body, but I do know that moving is right no matter what you’re doing. Try working out in the pool if you have access to one. If you don’t, maybe join the YMCA or a gym that has a pool. Bake some cookies and bribe your neighbor to use their pool. If you own a dog, a little walk after dinner is good for both of you, even if it's just five minutes Fido will love whatever you can give him.

I need to accept for myself that it’s going to be a long journey to get back to where I once was weight wise, and maybe I will never be a size 10 again, but I can be healthy. That’s what exercise is all about anyways, to be heart healthy. I also understand I’m going to have setbacks, flare ups and struggles on my journey. I have set a goal to workout at least twice a week if possible. I need to be patient, understanding, and listen to my body as I move forward. I want to reconnect with my body and tell it who’s the boss instead of the other way around. This will also help me to become stronger, physically and mentally. Summer is here and my pool is ready to jump in and start jogging, jumping, twisting, bending and swimming. I’m ready, are you?

http://www.myneuropathyandme.blogspot.com/

Neuropathy's Many Moods

Today's post from myneuropathyandme.blogspot.com (see link below) is a convincing personal story of living with the pain and discomfort of neuropathy. I'm sure many people will be able to identify with this lady's experiences. Sharing problems like this help to avoid isolation and the feeling that you are alone fighting your disease.

The Many Moods of Neuropathy

Posted by Tracy Love Saturday, June 8, 2013


I am a Latter-day Saint (Mormon) and the polygamy question comes up quite often, especially in the last Presidential race. First, let me say the Church of Jesus Christ of Latter-day Saints does not practice polygamy. We did over 100 years ago, but again, we do not practice it now. There are some that do proclaim they are Mormons and are practicing polygamy. They are not Mormons and have been excommunicated from the church for doing so.

Now that’s cleared up, let me tell you that between my husband and I we get asked the polygamy question a lot. How many wives does your husband have? If you ask me, I would say one, if you ask my husband he would say “it depends on how many moods she is in!"

Small Fiber Neuropathy has created many moods for me. The the mood of pain, anger, depression, isolation, rejection, acceptance,gratitude and strength, are just a few of the moods I have been in over the year. Some days I might only have one mood, some days I can have two, three or all of them. Over the course of my life, I have had curve balls thrown at me. It even seems that one curve ball after another came my direction and I couldn't get out of the way fast enough and SMACK!

I didn't have a happy childhood, so life back then wasn't easy. But as I got older I was led to believe that things were going to be easy for me, in which they were. I was married, having babies, we bought a home(s), we adopted some stray animals, debt was minimal, and life seemed to be running smoothly. I guess I'd never really known pain up close and personal, except for the labor pains of having three children. No problem was too big to overcome. In fact, on my desk is a plaque that reads “Perseverance: The greater the obstacle, the more glory in overcoming it.” I actually bought that plaque when I was trying to lose 170lbs, which I did in the course of four years. I needed a little reminder to keep going when the weight wasn't coming off quickly enough. I became active as the weight came off. I was running, walking, hiking, life was wonderful and full of opportunities. I even became a Weight Watcher Leader helping others lose the unwanted pounds. My life was running smoothly, until a series of unexpected pitches came my way that shattered my impression of this so called easy life. I got struck with an incurable illness that wreaks havoc on my body day and night. I cry in pain, get angry at this illness that has taken over my body. Every day is another mood for me and my husband, poor guy, he never knows who he's going to meet in the morning.

I have been accused of wearing many hats; I can do many different things. I guess I hate being monotonous in life, so I try my hand at something different just to make life more entertaining. So now instead of just wearing many different hats, I'm also putting on many different moods. In one of my earlier posts I wrote about wearing masks. Click Here to read that entry. These masks make it easier on the other person, not me. I try to make someone else feel better, so I don’t let them know how bad I’m feeling, hence the mask. But Small Fiber Neuropathy or any Chronic Illness for that matter, can cause a person to have many different moods all in one day. Therefore, we are so many people in one body...I guess you could say I have a multiple personality with this disease.

The saying “That which does not kill us makes us stronger,” is true. We are all given challenges in this life. My challenge is being diagnosed with a chronic illness, but this challenge has also given me strength that I never knew I had. I have come out on the other side of darkness and found that I am stronger, wiser and more compassionate, especially to those that are using the motor carts at the grocery store. I don’t know the pain they’re in, so my compassion has grown for them. I guess you could say that adversity has made me who I am today. In times of trials, we either cling to the boat or sink to the bottom of the ocean. Trials and triumphs are what make life interesting; overcoming the trials and enjoying the victory of a triumph is meaningful. Any trial in life, big or small is hard to go through, but attitude is really the key to whether we allow the trial to defeat us or not. I know that living with a chronic illness is hard to explain to others who have no idea of the daily struggles we face. Feeling pain, feeling sick, feeling awful on the inside while looking perfect on the outside (or at least I try to). Putting on a brave face for everyone is hard. Bravery, now that’s just one more mood we who are living with chronic illness have to bear.

I still have bad days. Some days are more bad than good, but I try not sink to the bottom of the ocean. Instead, I want to swim to land and climb the mountain and make the best of what I've been given. Since my diagnosis, I'm not as active as I used to be and medications, plus steroids have put weight back on, but I've learned to expect the unexpected. Life is not meant to be easy, but it is so worth it. One of my favorite song is by Miley Cyrus called “The Climb” It's not about the mountains (trials) in front of us, it's about the climb.

http://www.myneuropathyandme.blogspot.com/

What If Pain Dominates Your Life?

Today's post from psychologytoday.com (see link below) is a very useful article looking at various strategies for coping with daily chronic pain. You may not feel that everything is for you but you may well find a tip that will help you personally in learning how to deal with unrelenting pain. Worth a read for all neuropathy patients.

What If You Hurt ALL the Time?
Working to make the exceptions into the rule
Published on June 7, 2013 by Deborah Barrett, Ph.D., LCSW in Paintracking


“I hurt terribly all the time and nothing helps!” If you relate to this, or hear this from someone in your personal life or professional practice, it can feel depressing, discouraging, and trigger feelings of hopelessness. Yet even when pain is severe and unrelenting, everybody experiences some variation. It may be that:
Hot soaks or other types of soothing rest breaks may cause aches and pains to recede.
Creative endeavors or other distracting activity may cause pain to take a back seat.
An amusing movie or an enjoyable interchange may cause burning or shooting pain to become less evident.

Such reprieves may seem inconsequential because they are time-limited and the degree of relief is minimal. They will not help people feel “pain-free" or able to behave or feel “as before.” But any variation can be mined for answers that lead to positive adaptations. Learning the reasons for ups and downs can enable increased control and comfort.

Of course, severe pain can make variation difficult to spot. Pain and accompanying depression both tax cognitive abilities. Thus, people who live with chronic pain are more vulnerable to negative thinking, such as “it’s always this bad!” and to compromised memory, which make fluctuations more challenging to recall or view in context.

So what can you do if you can’t locate variation in your experience? What if it feels like your pain is a constant 10 out of 10?

Notice your worst times.

One strategy is to consider times that felt even worse. This has been a helpful first step for clients of mine who felt that their pain was “always the same.” No matter how bad it may be; it can always get worse. (I know this, too, from personal experience!) If you are struggling to recall any moments of relief, start by looking for the opposite. Exploring the reasons for worst moments reveals clues about ways to reduce their frequency and duration. You might notice that your pain was particularly difficult when:
Barometric pressure rose with a coming storm,
You stood in a long line, embarked on a jam-packed day, or stayed in bed for days, and/or
You received unpleasant news or had been mulling over an unpleasant thought.

Factors associated with intensified symptoms can provide clues to antidotes or alternatives.

Process of understanding:

Once you identify when your symptoms were at their worst, dig into the detail. If your pain spikes during times of high stress, you might practice relaxation techniques, such as diaphragmatic breathing and meditation. If sleep interruption is to blame, you might focus on sleep-enhancing tricks. Even identifying factors that are beyond your control can be useful. Take the weather, for example. Many people find heavy atmospheric pressure intensifies symptoms. While we cannot change the weather, we can adapt our response to it. Don’t underestimate the power of being able to say to yourself, “it makes sense that my pain is higher today” instead of feeling blindsided by an unexpected painful flare. Awareness of exacerbating factors can let you plan your schedule accordingly and reduce overgeneralizations that intensify suffering. At times not making things worse is the best anyone can do. Moreover, you can treat relevant information—such as the coming of a high-pressure weather front—as a cue to be ready with your most soothing, compassionate responses.

Silver lining:

Identifying times when your pain was worse also means there are times that were “less bad.” This reveals positive variation that might have otherwise been missed when thinking is overwhelmed by exhaustion. Recognizing variation, even subtle movement, introduces the possibility that you can understand and affect your experience.

Among the struggles of chronic pain is unpredictability. Flare-ups that seem out of the blue not only make it impossible to make plans but can make people feel powerless and demoralized. As you observe your ups and downs and the factors associated them, you gain control. This may come little by little. Figuring out how to reduce pain from a 10 to a 9 may not seem significant; but, as you learn what helps, you can incorporate this into your life, leading to greater and lasting improvement.

Be mindful of variation.

Mindful attention to variation itself can reduce suffering. Mindfulness involves deliberate awareness to the present moment, without judgment. Mindfulness reveals difficult moments for the moments they are, without assigning them undue significance, and emphasizes the choice we have in each and every moment. It can be helpful to remember that all we ever have to survive is this current moment. Approaching any feelings, thoughts, or sensations that arise as transitory can help you through them. When phrases like “I can’t take it” arise in your day, practice viewing them as fleeting thoughts rather than facts. Such thoughts may come and go but do not define your whole reality. Awareness of variation can not only reduce the sting of low points, but open us to see the positive exceptions.

Adopt a curious mindset.

Variation represents possibility. Research shows that perception of chronic pain and fatigue depends on a long list of factors including how we breathe; medication; engagement in positive distractions; emotional and physical intimacy; pacing of activity and rest; application of heat and cold; laughter; gradual and graduated exercise; our facial expression, self-talk, and attitude. As you note what brings relief, build these into your day and see the effects add up. By learning what helps (and hurts), you can make informed choices to increase joy, capabilities, and comfort.

What gets in the way?

The strategy may feel inadequate when you are wracked with pain and nothing brings sufficient relief. But what is the alternative?

Sometimes judgments about what “should be” interfere with steps to adapt, adjust, and embrace life as it is, in the best way you can. This is understandable; however, fighting against one’s current reality worsens the experience. Consider the example of standing in a long line or another activity that likely increases pain. While in line, you can intensify your suffering by fighting against reality with statements like, “this shouldn’t be so hard!” Or, you can bring a folding chair, stretch, meditate, engage in conversation, slow your breathing, or any number of strategies to reduce discomfort, while planning a restorative break to follow.

Acceptance does not mean liking things as they are. Chronic illness is dreadful, incredibly challenging, and involves multiple losses. You may have times when you need to wallow in the misery. Be gentle with yourself. Grief is an important part of this process. Make sure to acknowledge the validity of this.

Hope is vital!

Sometimes people with chronic pain retreat out of hopelessness. Looking for the variation in one’s experience—no matter how trivial it may seem—can be a vital first step in enhancing the life that you have.
© 2013 Deborah Barrett

http://www.psychologytoday.com/blog/paintracking/201306/what-if-you-hurt-all-the-time

The Doctor/Patient Relationship For People With Chronic Pain

Today's post from thebody.com (see link below) follows on from Dr. Rob's excellent letter to patients in yesterday's blog. We sometimes underestimate the value of a good relationship with our doctors and get so caught up in our own illness, that we take them for granted and expect faultless treatment every time. At the same time, doctors are also not perfect. They're human and make mistakes but relationships like this will serve both parties best if they are based on trust and respect. This article talks about exactly that.

They May Not Be Your Best Friends ... but Doctors Need Love Too! 
By Dave R. July 3, 2012

Internet links shown in these posts are designed to provide more detailed information if required.

Let me start by saying that most of the information here is based on personal opinion, which you may or may not disagree with. However it does stem from a great deal of unwanted, personal experience with doctors and specialist hospital departments. Having also talked to doctors about many of the issues discussed here, I have realized that there are always two sides to every story. Living with HIV is a great big learning curve!

I often find myself having conflicting feelings about doctors. I've got several specialists, who take care of various complaints both pre and post-HIV and a home doctor who deals with everyday ailments and tries to keep an eye on the big picture too. Sometimes I'm enormously grateful that I live in a country where that's possible and where I don't have to pay extra for any basic medical services. Other times, I seethe with frustration at mistakes, or wrong diagnoses, or misguided treatments.

I've had five different HIV regimes and their side effects to deal with because details of my original resistance to HIV drugs were lost in a move from one city to another. I've been "fired" by an irritated lung doctor, despite having lung emphysema, because I refused to give up smoking when he said I should (six months later I did it anyway). I had to go to Germany, at great expense, to get a series of private MRI scans to prove to my rheumatologist that the problems in my spine weren't between my ears after which I just moved on from him. I've also had to work my way through the ineffective pantheon of drugs used to treat neuropathy, when I had already been told that they probably wouldn't work (the neurologist was right there). So I've got some experience with doctors and not all of it was good. That said; my home doctor is a sweet and understanding younger woman, way older than her years; my HIV-specialist takes me seriously, admits his mistakes and admits when he just doesn't know, and my neurologist's door is always open if I need him. I can't complain, I really can't because all the years of experience of doctors and specialists have taught me one thing: they're doing their best; sometimes under very difficult circumstances.

I'm of a generation that was brought up to believe that what the doctor said was law and the absolute truth. The doctor was regarded as an upstanding member of society, ranking alongside the best teachers, the clergy and law enforcement officers. Things have changed since the '40s, '50s and '60s, however, and a culture of litigation has sprung up to buy lawyers the lifestyle they always wanted and expose the all-too-human failings of the above-mentioned pillars of society. This has led to mistrust on all sides. Doctors have become defensive and hesitant and patients have become questioning, distrustful and sometimes aggressive in their demands. Put this alongside the pressure that medical personnel are under due to financial and time restrictions and relationships have become much harder to build.

More Information: Medical Liability Litigation: An Historical Look at the Causes for Its Growth in the United Kingdom

Medical authorities and hospital committees are demanding quicker turnover, less waste and adherence to budgets. Young doctors are being taught how to deal with "difficult" patients, irrespective of their complaints, and a part of their job has become social management and damage control, instead of solely dispensing medical advice and treatment. Patients also now have the Internet to back up their claims and fears and in the last 30 years, a doctor's work has become a minefield where mistakes are unavoidable and the stress has never been higher. It's absurd really that in this day and age where medicinal and technological advances have given doctors more ability to heal patients than ever before, that constructive human communication in the consulting rooms has never been more difficult.

More Information: Patients Have Become Proactive in the Philippines

The phrase, "A little learning is a dangerous thing" (Alexander Pope, 1688-1744) has never been more appropriate for the modern doctor/patient relationship. Although doctors can offer more in the way of treatments than ever before, patients are also demanding more and arriving armed with pieces of knowledge and hearsay, gained from the Internet and social media. This information can be well-researched and be sourced from reputable sites but often, people visit one site and take the information presented there at face value and see it as absolute truth. The doctor then has to spend his time tactfully correcting the patient's inaccurate findings and that can be difficult in cases where the Internet is somehow seen as more trustworthy than the doctor.

More Information: Humanizing the Doctor-Patient Relationship

A case in point is in the field of HIV-related neuropathy. Both HIV and neuropathy are incurable and have many shapes and forms. That makes it perversely easier for many unscrupulous, independent, commercial enterprises, clinics and alternative therapists to go online to make claims for effective treatment and sometimes cures, which are sometimes not only untrue but at times dangerous. The problem is that there is always a certain amount of truth to be seen on the sites. The patient sees this; assumes that everything is fact and takes that information to the doctor or specialist who is treating them. The resulting conflicts of views immediately waste an enormous amount of time and set up unnecessary tensions within the session, when time is limited and the best treatment has to be found. No wonder many doctors see the Internet as an annoyance rather than the help it should be. Nobody wants to see the Internet policed but maybe someone should be keeping a closer eye on exaggerated claims in the medical sphere and taking steps to remove sites that make false claims (easier said than done) and promote sites that are trustworthy.

The person looking for medical information should therefore adopt the "let the buyer beware" attitude. You don't always trust claims made by commercial advertisers of everyday products, so why would you take medical information on a website to be gospel truth? It's always advisable to go to respected sites and then check and double check that the same information appears on other reputable sources. The sad truth is that there will always be people who are prepared to put your health at risk in order to make money.

Communication Is the Key

That said doctors themselves could make much more effort to acknowledge how valuable the Internet and social sites can be. The idea of creating a dialogue with a patient rather than a monologue where the patient answers questions and then sits and listens, may actually be helped by patients' access to the Internet. They can arrive at a consultation with enough basic knowledge to save time and get to the crux of the matter. Making your doctor aware that you first want to know what's wrong with you and then what the doctor is going to do about it will be greatly helped by your own willingness to do some ground work. The difficulty often arises, if either side succumbs to the temptation of arrogance. You really don't know all the answers and the doctor needs to feel that he or she's still in control of the situation, so neither partner can afford to be overbearing.

If you're ill, you may well be emotional at that moment. The doctor should be aware of that as a matter of course but you can help matters by trying to stay calm and concentrating on how the doctor can best help you. Getting angry, however understandable, is a sure way to ruin any constructive relationship with your doctor. He or she will immediately become defensive and given the alarming rise in dangerously aggressive patients, this may be justified. A consultation and the ensuing care should form the basis of an equal partnership where respect for each other is paramount.

More Information: Tips for Staying Calm in the Emergency Room

How we can get to this point is a matter of cultural adjustment and the medical profession must realize that people are not only quite capable of checking up on any information they are given but will also lose trust if they are palmed off with platitudes. It's all about being taken seriously but that applies to both sides. It will help greatly if you can convince your doctor that you're an intelligent person who deserves to be taken seriously but demanding anything based on what you've learned elsewhere, is not a good start. In the case of HIV and several associated illnesses like neuropathy, doctors will not have all the answers and should be able to admit that in a good relationship with their patient. Only then can both parties move forward to achieve the best possible solutions.

More Information: Can You Trust Your Doctor? Get the Truth at Your Next Visit

Unfortunately, recent developments in hospitals and doctors' surgeries have led to the medical profession being ultra careful with both what they say and how "close" they feel they can get to their patients. Aggressiveness and violence, either due to emotion, or drugs, or alcohol, or even cultural misunderstandings, have created an atmosphere which isn't always conducive to real dialogue. The numbers of medical staff who have been physically and verbally assaulted is staggering and a relatively modern social trend.

More Information: Approaches to Coping With Aggression in Medical Situations

As already mentioned, patients have also learned the power of litigation and doctors fear it like nothing else. This has led to patients subconsciously having the idea that the "balance of power" has shifted in their favor and the feeling that they are entitled to demand immediate, or extra attention. Raw emotions, or alcohol, drugs, or even extreme pain, can spark confrontations which unfortunately often get out of hand. Little wonder then that the medical profession is more nervous than ever. Many doctors look back longingly to the time when their word was law and argument from the patient was rare. It's happening in the education profession too, often with the same results; as parents demand more and more from long-suffering teachers and become aggressive if they don't get it.

More Information: Fears of Malpractice Litigation

That all said many patients, especially older people, are reticent and just don't want to appear "pushy" in the doctor's consulting room. They weren't brought up that way and it's often difficult for doctors to coax the correct information out of them, especially if it's perceived as being of an embarrassing nature. Many older people with HIV may be able to relate to this. However, today's society is unfortunately one where he who shouts the loudest often gets what he wants. When all's said and done, you're not there to make your doctor feel good (though if it helps, it can be a good tactic!) but to get the best treatment possible.

People have to find the happy medium between passive respect for the doctor and yelling at him or her because you don't hear what you want to hear. We also all need to make adjustments in our approaches and learn to use the wealth of new information available in such a way that a consultation with a doctor becomes a constructive and rewarding process for both sides.

If you use the Internet or health forums, to research information, this will often bring up more questions than answers and for that reason, it's a really good idea to write everything you want to know down on paper, before you go to your appointment. It's another time saver. One of the greatest causes of frustration is when the doctor more or less ushers you out of the room before you feel you're finished or furnished with enough information. The problem is that it is easy to forget that there are patients waiting and they have problems too. Time constraints are putting too much pressure on the system and although that's surely a matter for the administrators and their budgets, it doesn't help doctor or patient when they've got 15 minutes or less to get everything dealt with. It's up to the patient to save as much time as possible themselves and that's where sensible pre-consultation research and lists of important points can come in very handy. We've all been in the situation where you get home after a doctor's appointment and kick yourself because you forgot to ask this or that. Careful preparation can avoid that problem. Another possible tip is taking someone with you as support. They will remember things the doctor has said that you haven't and can remind you to ask things you may have forgotten. Most doctors have absolutely no objection to this, partly because they realize the value of a second pair of ears.

More Information: Getting the Best Out of Medical Consultations

Doctors also tend to have their own way of giving information. This involves using medical terms which are sometimes not within most people's vocabularies. Occasionally this may be a deliberate tactic, in that they know the patient is unlikely to understand and more likely to accept any given treatment without question. It is always advisable to ask the doctor precisely what he means, or to repeat a piece of information because you haven't quite grasped it. They may be irritated but you do have the right to understand everything that's happening to you. Apparently medical organizations recognize this and are working on improving their communication skills. Again, this may be a direct result of patients having far more knowledge of their own complaint than ever before. Always remember, you have a right to an expert opinion but not one that will blind you with science: telling a patient that the subject matter is too complex to explain in five minutes is, to my mind, not really an option.

More Information: Patient-Physician Communication: Why and How

For people with HIV the doctor's communication skills apply especially to the potential side effects of medication. We know that it's a question of risks versus benefits but doctors should explain that to you very clearly so you at least know what to expect. Of course, many doctors are reluctant to do this because of the hypochondria factor. Putting side effects into people's minds carries the risk of patients then looking for them at every turn. However, if a doctor tells you what's possible and what's unlikely and then what to look for, you will leave the surgery feeling much more aware of what you're dealing with and that will save time at a later date.

It's also true to say that many people living with HIV and various co-morbidities can become more aware of their own disease(s) than their doctors. My HIV-specialist is a caring and careful man; a general internist and a specialist in HIV but he practices 90 percent of the time in a hospital environment. The sterility of a doctor's consulting room bears little relation to real life. He doesn't always fully understand what living with HIV means in the day to day, real world, where the patient has to cope with many external influences. Very often things are black or white from his point of view and require treatment according to the book, when we all know that HIV is a whole box of tricks which doesn't follow the rules. He does listen to his patients though and not rush them out before they've told their story. Although he is renowned for keeping people waiting, I can forgive him for almost anything because he listens so well. So, although the doctors may find it a little disconcerting, we have to impress on them that we do listen to our own bodies and have learned to trust various signals when something is wrong.

Patients also need to realize that doctors are not all the same and certainly in the case of HIV may have differing levels of experience and expertise. The home doctor is not a specialist in HIV, or any of the potential secondary infections, but is invaluable as a first port of call regarding the sorts of problems that both we and the rest of the population meet on a daily basis. Keeping him or her up to date with your HIV status and general condition will help him or her understand the nature of anything else that may happen to you. In theory the specialists should regularly write to the home doctors with reports of their own findings, but in the real world this may happen only sporadically. Even if you just hand over a piece of paper with your latest test results on it, it won't take up any time but will help your home doctor better understand your general health. Of course, some people prefer that their home doctor is kept out of the picture, especially in lands and culture where HIV is still an extremely sensitive subject, but this is a shame and a possible hindrance to future effective treatment. It's all about trust though, and the patient must do what he or she feels is best to protect his or her present situation. If discretion is necessary then that's the way it is.

There will always be cases where things go wrong between doctor and patient. You just may not click, or you may be unsatisfied with the treatment and approach you are receiving and as a result, the trust can break down. Many countries have the option of a second opinion and whilst many patients may see this as a hurdle, involving starting again with someone new, it may be of more benefit to you in the end. Like all relationships, human beings are involved and not everybody gets on with everybody else. It's just a fact of life and mostly nobody's fault. If that's the case, then it may be best to realize that your health is paramount and move on to someone, or somewhere, else. Similarly, if your doctor has made a mistake, your first reaction may be of anger and frustration because doctors are supposed to be infallible. Realizing that they are human beings with long working days and incredible pressures too may help you avoid long and ultimately frustrating complaints procedures. To move on and make it right with someone else may be the philosophy that saves you a lot of heartache.

More Information: In Better Health: Doctor-Patient Relationships Improving

You're ill, so the likelihood is that you'll be spending some time in various hospital departments and doctors' waiting rooms. Making that as pleasant and constructive an experience as possible may turn out to be a social skill both doctors and patients will be concentrating on more and more in the future. So if it's possible to sum up the best approach for receiving the best of care then some of the following points may help you make decisions.

Bring a friend
Whether in a hospital bed or in a consultation, a patient may receive better attention than if they were on their own. It's sad but true and we should all be aware of people who are on their own in life, especially the elderly. There are enough horror stories of neglect when there's no one to witness it, so offering a little of your time to accompany someone who lives alone may be of more value than you think.

Keep your cool
Although you're ill and under stress and may have to go through endless bureaucracy before you even see the doctor, it won't help if you bring that emotion to the consultation. Tell the doctor how you're feeling and why but if you can explain it calmly you will have much more chance of sympathy and less chance of anti-depressants being hurriedly prescribed.

Don't exaggerate, or play down your symptoms
Your doctor will quickly see through you if you do either and may come to conclusions that lessen the effectiveness of your treatment. Don't feel guilty, we've all done it because we're either desperate to convince the doctor that we're really not well, or hate complaining and feel we are somehow weak, if we moan.

Find your hidden sense of humor
This can diffuse what is normally an abnormally formal situation, especially with a new doctor. If you smile or make jokes at your own expense, you'll come over as more relaxed and put the doctor at ease too. However, the latest smutty joke, or incident from Ru Paul's Drag Race may not have the desired effect.

Be prepared
Like all good boy scouts, do your research and make a list of everything you want to know. If necessary, jot down things during the consultation too -- you'd be amazed at how much you forget especially if the news is not good. Also ask questions if there's anything you don't understand -- the next appointment may be some time away.

Look at your doctor in a different light
He or she may not have all the answers and you're entitled to be allergic to BS but doctors are human beings, with families and lives outside the consulting room. They may be having an off-day, or not feeling too great themselves, or just be in a foul mood. We're entitled to professionalism but we're dealing with human beings not robots (yet) so try to adapt your approach to what you read in their body language or attitude. You want the best possible outcome and so do they but if you're the twentieth patient, after a long and complicated day, try to be aware that they are only human too. That's why I always try for first appointments. Providing they've had their coffee and aren't Nurse Jackie, Oxycodone dependents; they should be at their best early in the morning.

It's a complex social interaction between doctor and patient and it's changing very quickly with the times. Some doctors and medical authorities are still not aware of the new possibilities that patients have to arm themselves with information. Some still feel that their position makes their opinions unquestionable and fail to take patients seriously. Equally some patients are too quick to judge, or find it difficult to communicate with doctors, or "self-destruct" by becoming angry or frustrated. It's sometimes a delicate balancing act but communication and the building up of trust and good relationships are what we all must strive for; it's in our own interests. Similarly, we don't have to put up with sloppy treatment, or inappropriate personal interaction. It is how we deal with it that will determine how well we are treated. We need the medical profession on our side and they need us to help them understand what it is to live with HIV and its associated medical problems. Still some work to do then.

"In the sick room, ten cents' worth of human understanding equals ten dollars' worth of medical science."

-- Martin H. Fischer (1879-1962), German-American physician

More information about the doctor/patient relationship can be found in the following links.

The Doctor-Patient Relationship: Challenges, Opportunities, and Strategies

Physician-Patient Relationship

http://www.thebody.com/content/67715/they-may-not-be-your-best-friends--but-doctors-nee.html

A Doctor's Letter To Chronic Neuropathy Patients (Recommended)

Today's post from more-distractible.org (see link below) should be required reading for every neuropathy patient and every neuropathy patient's doctor. It's an exercise in humility we could all learn from and will help everybody with chronic pain understand where their doctors are coming from. If you like it, pass on the link to your friends or other people you know with chronic pain. This doctor deserves all our thanks for being honest and giving a side of the discussion we rarely get to see. (See another post on the same subject tomorrow on the blog)

A Letter to Patients With Chronic Disease

by Dr. Rob Lamberts on July 14, 2010 in BEING A DOCTOR, BEST OF, JUST STUFF KIND OF THINGIES, PERSONAL MUSINGS

Dear Patients:

You have it very hard, much harder than most people understand. Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like. How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body? How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?

I can’t imagine.

But I do bring something to the table that you may not know. I do have information that you can’t really understand because of your unique perspective, your battered world. There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you. It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past. It may not seem important, but trust me, it is.

You scare doctors.

No, I am not talking about the fear of disease, pain, or death. I am not talking about doctors being afraid of the limits of their knowledge. I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job. We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.

But chronic unsolvable disease stands square in our way. You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.

And since this is the perspective you have when you see doctors, your view of them is quite different. You see us getting frustrated. You see us when we feel like giving up. When we take care of you, we have to leave behind the illusion of control, of power over disease. We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress. You are the rock that proves how easily the ship can be sunk. So your view of doctors is quite different.

Then there is the fact that you also possess something that is usually our domain: knowledge. You know more about your disease than many of us do – most of us do. Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain - is something most of us don’t regularly encounter. It’s something most of us try to avoid. So you possess deep understanding of something that many doctors don’t possess. Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease. It’s like a parent’s knowledge of their child versus that of a pediatrician. They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.

So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have. You see why you scare doctors? It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them. I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand. You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.

So let me be so bold as to give you advice on dealing with doctors. There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:

Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control. All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion. That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start. Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.

Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease. These doctors should be avoided. But most of us are not like that; we really want to help people and try to treat them well. But we have worked very hard to earn our position; it was not bestowed by fiat or family tree. Just as you want to be listened to, so do we.

Keep your eggs in only a few baskets – find a good primary care doctor and a couple of specialists you trust. Don’t expect a new doctor to figure things out quickly. It takes me years of repeated visits to really understand many of my chronic disease patients. The best care happens when a doctor understands the patient and the patient understands the doctor. This can only happen over time. Heck, I struggle even seeing the chronically sick patients for other doctors in my practice. There is something very powerful in having understanding built over time.

Use the ER only when absolutely needed – Emergency room physicians will always struggle with you. Just expect that. Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home. They might not fix your pain, and certainly won’t try to fully understand you. That’s not their job. They went into their specialty to fix problems quickly and move on, not manage chronic disease. The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.

Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address. I can’t work that way, and I don’t think many doctors can. Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made. It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems. It helps me to prioritize with them.

Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you. Some docs are not cut out for chronic disease, while some of us like the long-term relationship. Don’t feel you have to put up with docs who don’t listen or minimize your problems. At the minimum, you should be able to find a doctor who doesn’t totally suck.

Forgive us – Sometimes I forget about important things in my patients’ lives. Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well. Sometimes I avoid people because I don’t want to admit my limitations. Be patient with me – I usually know when I’ve messed up, and if you know me well I don’t mind being reminded. Well, maybe I mind it a little.

You know better than anyone that we docs are just people – with all the stupidity, inconsistency, and fallibility that goes with that – who happen to doctor for a living. I hope this helps, and I really hope you get the help you need. It does suck that you have your problem; I just hope this perhaps decreases that suckishness a little bit.

Sincerely,

Dr. Rob

http://more-distractible.org/2010/07/14/a-letter-to-patients-with-chronic-disease

Australian Neuropathic Pain Study

Today's post from racgp.org.au (see link below) looks at the results of an Australian study of people with neuropathic pain problems. Very often, surveys like this can be difficult to understand for people looking for quick information but this one gives clear information and a useful insight into how many neuropathy patients react to their disease. Of course, a study of Australian patients doesn't mean that this applies to the rest of the world; regional differences and circumstances will provide different results depending on where you are but I would guess that most people living with neuropathy across the world will recognise much of the information shown here.

Neuropathic Pain
Volume 42, No.3, March 2013 Pages 91-91

Allan Pollack FMRC University of Sydney, New South Wales.

Christopher Harrison Australian GP Statistics & Classification Centre, University of Sydney, New South Wales.

Joan Henderson Family Medicine Research Centre, University of Sydney, New South Wales.

Helena Britt Family Medicine Research Centre, University of Sydney, New South Wales.

Neuropathic pain (NP) may result from a lesion, disease or dysfunction of the somatosensory system (peripheral or central nervous system). Examples include diabetic polyneuropathy, postherpetic and trigeminal neuralgias, spinal cord injury pain and painful radiculopathy. While general population surveys in the United Kingdom and France indicate a prevalence of 7–8%, information is scant in Australia, as the existence of NP may be subsumed within the diagnostic label of the associated condition.

This lack of information led us to design a sub-study of the BEACH program, surveying 2654 patients from 91 general practitioners in late 2012, to determine the prevalence of NP among patients seen in Australian general practice, its most commonly described symptoms, the time between the onset of symptoms and consulting a GP, reasons prompting the patient to seek help and reasons for the patient delaying this. The prevalence of NP (or its symptoms) was 8.5% (n=226), comprising 6.6% formally diagnosed NP and 1.9% symptoms of (undiagnosed) NP. There was no difference in the prevalence between the sexes.

Patients aged 45–64 years had the highest rate of NP (15.8%, Figure 1), accounting for 109 (48.7%) of the 224 respondents with NP. There were 439 responses by 225 patients describing the nature of the NP. The three most common were ‘shooting pain’ (52.9% of patients), ‘burning’ (47.6%) and ‘pins and needles’ (44.0%). Time between NP symptom onset and first seeking GP care was reported by 205 respondents. The majority of patients (84.9%) sought help within 6 months of symptom onset. The most frequent reasons to seek GP help were intolerable pain or interference with normal routine, sleep or physical activity (Table 1). The most common single reason (given by 12 of 30 patients) for waiting more than 6 months was that the patient ‘hoped pain would self-resolve’. These results indicate a prevalence of NP similar to that of the European population surveys.


Figure 1 (above). Age-specific rates of neuropathic pain (with 95% confidence limits)

Table 1(below).

Table 1. What finally prompted patients to seek help from their GP (multiple responses allowed

Reason                       Responses    Proportion of 204 patients(%)

Unable to tolerate pain      121               59
Pain was interfering with:
- normal daily routine        114               56

-sleep                              104               51

-physical activity               104               51

-family/friends                   32                16

-relationships                    30                 15

TOTAL                              505 responses

Acknowledgements Competing interests: None.
Provenance and peer review: Commissioned; not peer reviewed.

The authors thank the GP participants in the BEACH program, and all members of the BEACH team. Funding contributors to BEACH from April 2012 to March 2013: Australian Government Department of Health and Ageing; AstraZeneca Pty Ltd (Australia); CSL Biotherapies Pty Ltd; Merck, Sharp and Dohme (Australia) Pty Ltd; National Prescribing Service; Novartis Pharmaceuticals Australia Pty Ltd; Pfizer Australia Pty Ltd. This SAND sub-study was undertaken in collaboration with Pfizer Australia Pty Ltd. BEACH and all SAND sub-studies are approved by the Human Research Ethics Committee of the University of Sydney.

References
Treede RD, Jensen TS, Campbell JN, et al. Neuropathic pain: redefinition and a grading system for clinical and research purposes. Neurology 2008;70:1630–5. Search PubMed
Torrance N, Smith BL, Bennett MI, Lee AJ. The epidemiology of chronic pain of predominantly neuropathic origin. Results from a general population survey. J Pain 2006;7:281–9. Search PubMed
Bouhassira D, Lantéri-Minet M, Attal N, Laurent B, Touboul C. Prevalence of chronic pain with neuropathic characteristics in the general population. Pain 2008;136:380–7. Search PubMed
International Association for the Study of Pain. Available at www.iasp-pain.org/AM/Template.cfm?Section=Home&Template=/CM/ContentDisplay.cfm&ContentID=12215 [Accessed 11 January 2013].
McBeth J, Prescott G, Scotland G, et al. Cognitive behavioural therapy, exercise, or both for treating chronic widespread pain. Arch Intern Med 2012;172:48–57. Search PubMed

http://www.racgp.org.au/afp/2013/march/neuropathic-pain/

How Neuropathy Can Affect You Negatively

Today's post comes originally from the New York Times, via the deccanherald.com (see link below). It's a very good description of how neuropathy can affect your life and mentions several means of dealing with the symptoms. Worth a read for the neuropathy beginner or for someone who knows someone with neuropathy and wishes to discover more.

Devastating effects of peripheral neuropathy
By Jane E Brody

Damage to one or more of the myriad nerves can cause disabling pain or even paralysis

If you have ever slept on an arm and awakened with a ‘dead’ hand, or sat too long with your legs crossed and had your foot fall asleep, you have some inkling of what many people with peripheral neuropathy experience day in and day out, often with no relief in sight.

And numbness and tingling are hardly the worst symptoms of this highly variable condition, which involves damage to one or more of the myriad nerves outside the brain and spinal cord. Effects may include disabling pain, stinging, swelling, burning, itching, muscle weakness, twitching, loss of sensation, hypersensitivity to touch, lack of coordination, difficulty breathing, digestive disorders, dizziness, impotence, incontinence, and even paralysis and death.
I realise now that I had a mild, reversible bout of peripheral neuropathy several decades ago when a misplaced shot of morphine damaged a sensory nerve in my thigh. It took three years for the nerve to recover, and for much of that time I could not tolerate anything brushing against my leg.

One of my sons, too, was afflicted when a nerve behind his knee was injured during a basketball game. He had no feeling or mobility in his foot for nine months, but after several years the nerve healed and he regained full use of his foot.

And a good friend was nearly paralysed, also temporarily, following a flu shot, by a far more serious form of peripheral neuropathy — an autoimmune affliction called Guillain-Barre syndrome, in which one’s own antibodies attack the myelin sheath that protects nerves throughout the body.

There are hundreds of forms of peripheral neuropathy. A medical guide describing them, compiled by a team of neurologists at the behest of the Neuropathy Association, fills a booklet the size of a two-year wall calendar.

The association, which sponsors research and provides education and support for patients and families dealing with peripheral neuropathy, estimates that the disorder afflicts more than 20 million Americans at any given time. If the cause can be corrected, peripheral nerves can regenerate slowly and patients can recover, although not always completely.
But many people never recover. They must learn to live with the disorder, with the help of treatments and devices that can ease their discomfort and disability. With such a wide array of symptoms and causes, getting a correct diagnosis is often a challenge. Worse, frustrated patients are sometimes told, “It’s all in your head.”

Causes behind ailment
There are three types of peripheral nerves: sensory nerves, which transmit sensations like pain, touch, heat and cold; motor nerves, which control the action of muscles throughout the body; and autonomic nerves, which regulate functions that are not under conscious control, like blood pressure, digestion and heart rate. Symptoms of neuropathy depend on what nerves are involved.

Someone with damaged sensory nerves might not feel heat, for example, and could be scalded by an overly hot bath. Neuropathy of the motor nerves can result in weakness, lack of coordination or paralysis; neuropathy of the autonomic nerves can lead to high blood pressure, irregular heart rate, diarrhea or constipation, impotence and incontinence.
The list of possible causes of neuropathy is far too long for this column. They include inherited conditions like Charcot-Marie-Tooth disease; infections or inflammatory disorders like hepatitis, Lyme disease, AIDS, rheumatoid arthritis and lupus; organ diseases like diabetes, hypothyroidism and kidney disease; exposure to toxic substances like industrial solvents, heavy metals, sniffed glue and some cancer drugs; trauma to or pressure on a nerve from an injury, cast, crutches, abnormal body position, repetitive motion, tumour or abnormal bone growth; alcoholism; and deficiency of vitamin B12.

The most common cause, accounting for nearly a third of neuropathy cases, is diabetes, especially among those whose blood sugar levels are poorly controlled. Half of all people with diabetes eventually begin to lose sensation and develop pain and sometimes weakness in their feet and hands. In people with diabetes, even minor injuries to the feet, if not quickly and properly treated, can result in gangrene and amputations.
In nearly a third of cases, no cause is ever found, leaving patients with no other recourse than treatment of their symptoms.

Suspected cases are best referred to a neurologist, who should begin by taking a complete personal and family medical history and performing a physical and neurological examination, checking on reflexes, muscle strength and tone, sensations, balance and coordination.
A complete workup is likely to include blood tests, urinalysis, a nerve conduction study and electronic measurements of muscle activity. Imaging studies, like a CT scan or an MRI, may reveal a tumour, vertebral damage or abnormal bone growth. In some cases, a nerve or muscle biopsy may be done.

Relief and restoration
If the underlying cause cannot be corrected, the goals of treatment are relief of symptoms and restoration of lost functions. Pain control is paramount. Effective relief may come from over-the-counter remedies or a lidocaine patch but sometimes requires prescribed opiates.
Many with neuropathic pain have benefited from drugs licensed for other uses, including antiseizure medications like gabapentin, topiramate (Topamax) and pregabalin (Lyrica) and antidepressants like the tricyclic amitriptyline and the selective serotonin and norepinephrine reuptake inhibitor duloxetine (Cymbalta). Vitamin B12 deficiency can be treated with supplements and fortified cereals or by judicious consumption of meats, poultry, fish, eggs and dairy products.

And since alcohol and tobacco are particularly risky for people with neuropathy, or a health problem that predisposes them to it, they have every reason to quit smoking and to drink only in moderation.
Many patients are helped by physical therapy, occupational therapy and devices like braces, splints and wheelchairs. Railings on stairways and in the bathroom, elimination of tripping hazards like scatter rugs, and improved lighting (including night-lights) can reduce the risk of falls. For those insensitive to heat, a thermometer should be used to test water in a tub, shower or sink. Orthopedic shoes are invaluable to patients with lost sensitivity in their feet or impaired balance.

A variety of mechanical aids can make it easier to live with peripheral neuropathy, among them kitchen tools made by Oxo. Those with digestive problems might try eating small frequent meals and sleeping with their heads elevated.

Other helpful sources include the book ‘Peripheral Neuropathy: When the Numbness, Weakness and Pain Won’t Stop’ (‘Demos Health’, 2006), by Dr Norman Latov. The association maintains a list of support groups and of centres that specialise in diagnosing and treating neuropathy.
The New York Times

http://www.deccanherald.com/content/39347/F