Effect Of HIV On Neurological System

Today's post from zedie.wordpress.com (see link below) talks about something that is causing arguments for and against across the scientific world. Along with aging more quickly, if you have HIV, the incidence of neurological disorders (including dementia, memory loss, Alzheimers and Parkinsons and of course neuropathy) amongst HIV positive people is said to be both higher and occurs sooner, than in the general population. It's difficult to prove, which is why there are many who disagree but as far as neuropathy is concerned, when 30% to 40% of HIV carriers have neuropathic problems, those are pretty convincing statistics. The problem is that just as many diabetes patients end up with neuropathy, so restricting it to HIV patients is somewhat tenuous.

The Effect of HIV on Neurologic Disorders.
Source: Journal Watch Infectious Diseases Nov.22nd 2012

In a large cohort study, HIV-positive men developed neurologic disorders at an earlier age and more frequently than HIV-negative men.

The incidence of many neurologic complications of HIV infection has fallen dramatically since effective combination antiretroviral therapy (ART) was introduced in 1996. To determine whether HIV infection continues to have an effect on neurologic disorders during the era of combination ART, investigators studied a large cohort of men followed between July 1996 and June 2011 in the Multicenter AIDS Cohort Study.

HIV-positive (n=1862) and HIV-negative (n=2169) men who have sex with men were included in the analyses. In the HIV-positive men, the median CD4 count was 585 cells/mm3, and the average duration of ART use was 10.6 years. The incidence of neurologic disorders was higher in HIV-positive men than in HIV-negative men. The median age of first neurologic diagnosis was 48 in the HIV-positive men compared with 57 in the HIV-negative ones. Peripheral nerve and muscle disorders (the most common diagnoses), nervous system infections, dementia, and seizures were more common in HIV-infected than in HIV-negative men; when only confirmed cases were counted, stroke was not more common in the HIV-infected group. Although this study took place during the era of effective therapy, 21% of HIV-infected patients with a neurologic disorder were not receiving ART at the time of the complication.

Comment: This study suggests that HIV infection may increase the rate — and perhaps accelerate the development — of neurologic disorders. However, the relevance of these findings to patients who are doing well on current therapy is difficult to know. A substantial fraction of patients who developed neurologic complications were not receiving ART, and, of those on treatment, we are not told what proportion had virologic suppression. Moreover, the development of some diagnoses in this study, such as peripheral neuropathy, may have been exacerbated by antiretrovirals that we no longer use (e.g., stavudine, didanosine). Also, because ascertainment of neurologic conditions in this study was based on medical record review, more recently recognized and subtle entities, such as mild neurocognitive disorder, were not included. Nevertheless, this study highlights the importance of following HIV-infected patients closely for neurologic disorders and emphasizes the need to initiate effective ART before such complications develop.

http://zedie.wordpress.com/2012/11/22/the-effect-of-hiv-on-neurologic-disorders/

The Pitfalls Of Caring For Someone In Chronic Pain

Today's post from paincommunity.org (see link below) is a very useful article describing how difficult it can be to be a care giver for someone living with chronic pain. As many of you will know, neuropathy pain can reduce the quality of someone's life dramatically but not only the patient suffers. Their family and friends and the person who has had the responsibility of primary care thrust upon him or her, has to learn to adapt to a whole new relationship scenario and that can be very difficult indeed. Via the writer's own personal experiences, this article sums up the main problems and gives some hints as to how to learn to cope. Certainly worth a read if you're in that position, either as patient or carer.

“Angry, Sad and Frustrated”– The Unspoken Feelings of a Caregiver
Posted by Jim Stemple | March 19, 2014

As a caregiver to a very special lady for the last 20+ years I have learned it is ok to be angry and frustrated. This understanding did not come overnight.
Here is what I learned.
 
1: Chronic pain comes along and turns the lives of everyone involved upside down. Everything you knew is no more. Your life isn’t your life anymore, it is now a life filled with uncertain days and nights. You see the pain doesn’t only affect the person living with pain, it affects all those around them. It affects the whole household and those close to them outside the home. I may not live with chronic pain myself but I do live with someone who does and I am affected on so many different levels.

All the plans you had made for the future are put on hold or forgotten about. You find that each day life can and does throw something new at you and your loved one. It can be breakthrough pain, it can be a new health issue, insurance problems, finding a provider or just plain old frustration that threatens to blow the top of your head off.

The stress of not being able to know from day to day what the pain is going to decide to do to your loved one is over-whelming some days. As a caregiver you constantly worry what each day will bring.
 
2: Sometimes the one who is living with pain doesn’t realize how much it affects those around them. You see they are so consumed with trying to deal with the pain each day that sometimes they forget about the ones around them. The one living with pain will feel as if their partner/ caregiver doesn’t care enough, is angry at them or doesn’t believe that they “really have pain”.

But you know, it isn’t that at all. We, as caregivers, are pulled in so many directions that sometimes we think our heads may spin off of our necks. We do not know if we are coming or going—I know that I have felt that way.

3: For many partners/caregivers the financial stability of the family is always on your mind. For some families you lose the 2nd income that you were dependent on when your loved one is no longer able to work due to the pain. This can and does cause much discomfort and friction within the family. You don’t lay the blame on your loved one because they are unable to work but you cannot help but to feel frustrated at what the pain has done to your family and your dreams.

So what is the secret to success?

Over the years I have found that the most important thing is to communicate. It is ok for the caregiver to lose it once in a while. It is ok to be angry, sad, frustrated and overwhelmed. Share what you are feeling with your family or loved one. Let them know that you aren’t feeling all these things because of them, you are feeling all of this because of the situation—the pain and what it has done to the family and the one for whom you care so deeply.
Communicate with each other.

It is a two-way street. Share those feelings rather than holding on to the frustration, fear and anger. You are borrowing trouble that you nor your loved ones need, if you do not remain open. Holding in those nasty feelings may come back and haunt you– one day you are going to blow and it is not going to be pretty. Don’t wait until the fuse is lit because then things are said that hurt your loved one. Things that cannot be taken back no matter how much you wish you could.

I have been guilty of opening my mouth in frustration and saying some very hurtful things to her. Things that I didn’t mean and things that I wish I could take back more than anything. I am thankful because she knows that it is the anger and frustration talking and she can and does let my slips of hurtful words roll on by her and doesn’t dwell on them.

Trust me, we were not always like that but over the years we have learned to understand that the pain can make each of we say things that we truly don’t mean. We have learned that the pain is a vixen waiting for the right moment to spring forward and turn our lives in to a “he said, she said” fight of the century.

As a caregiver, I have found times where I feel torn between providing for the family and being there when I am needed. This push and pull really sucks! My job consists of taking me out of state each week. There are Mondays that I want nothing more than to stay at home and comfort her. Yet, I know that this will not happen, as I must be the provider which means leaving her and heading out to work. It doesn’t matter how much pain she is in. I have to leave her and go to work.

Yes, there are times she gets angry at me as she wants me there with her. It isn’t that I can really do anything to make the pain better. It is just knowing that she isn’t alone. I understand that but I am helpless to do anything about it. Even though she gets upset, I know she understands that if I could, I would never leave her alone.

As a caregiver, don’t you feel pulled and pushed in a hundred different directions at the same time? Do you find yourself angry, sad and frustrated because you want nothing more than to help your loved one? Would you take the pain from them in a heartbeat? I know I would. After all, I feel it was my job to protect her and help make her life a fairy tale come true.

The pain changes all that but remember even though you are angry, sad and frustrated you can make the world of difference for your loved one by just being there for them. You can make a difference by just listening, by holding their hand or giving a gentle hug when they need it the most.

Help find the humor in this world of pain and share it with them. You will be surprised how much laughter can help both of you. My special gal tells people all the time that if she had a penny for every time I have made her laugh we would be millionaires. That makes me smile.
Here is the pearl:

Remember the pain affects the whole family unit and it is up to everyone in that unit to make the best of the situation. Sure, you can choose to be miserable, depressed and find yourselves fighting all the time. A better option is to choose to communicate with each other and find the love, laughter and the ability to still see all that is good in your lives. Live the life that you want to live and refuse to let the pain destroy what means the world to you.

http://paincommunity.org/angry-sad-frustrated-unspoken-feelings-caregiver/

Anaesthetics And The Treatment Of Neuropathy

Today's post from asahq.org (see link below) is a general assessment of neuropathy treatment at the moment, from the American Society of Anaesthesiologists and looks particularly at anaesthetics as pain killers, including such drugs as ketamine. The problem is that there are no definite conclusions here. Ketamine is seen as a promising analgesic agent for neuropathy sufferers but there's little discussion of opioids in general and no mention of methadone for instance, which is proving very successful in nerve pain cases. Nevertheless, this does look at neuropathy treatment from the point of view of anaesthesiologists and as such gives us another angle on the subject.

Causes of Neuropathic Pain Guide Treatments
Timothy Lubenow, M.D., Philip Peng, M.B.B.S., and Jianguo Cheng, M.D., Ph.D. 2014

Neuropathic pain is one of the most complex and difficult management challenges physician anesthesiologists face. Hundreds of distinct neuropathic pain syndromes have been documented and many are refractory to multiple treatments.

“Neuropathic pain affects 18 percent of the general U.S. population,” said Jianguo Cheng, M.D., Ph.D., Professor and Director of the Pain Medicine Fellowship Program at the Cleveland Clinic in Cleveland. “It is a major part of our practice and very resource-intensive. Medical costs for neuropathic pain patients are threefold higher compared with matched control subjects.”

Neuropathic pain is caused by a lesion or insult in the peripheral or central nervous system. The resulting plasticity in the peripheral and central nervous system leads to sensitization and hyperexcitability of neurons in the dorsal root ganglion, the spinal cord and the brain. The result is hyperalgesia, allodynia and spontaneous pain.

Causes include post-surgical, post-traumatic or post-herpetic neuralgia, diabetic neuropathy, HIV neuropathy, hypothyroidism, toxic exposures, lesions of the central nervous system, complex regional pain syndromes and more.

“Treatment of neuropathic pain has two goals,” said Timothy Lubenow, M.D., Professor of Anesthesiology, Rush University Medical Center, Chicago. “We want to alleviate or eliminate the cause of the underlying disease and to relieve symptoms.”

Treating the underlying cause is vital to long-term control, he said. For example, it is virtually impossible to successfully treat diabetic neuropathy until the underlying diabetes is brought under control.

Step therapy is standard for treating neuropathic pain, Dr. Lubenow said. Most patients can be treated with drug therapy, typically combinations of agents with different mechanisms of action. Multiple medical societies have issued guidelines for neuropathic pain, most with somewhat different recommendations. There are a wealth of anecdotal reports and open-label studies, and a dearth of strong evidence.

“When the evidence is soft, it is more open to interpretation and opinion,” he said. “You want a drug or a combination of drugs that are useful in alleviating pain, but you also want to minimize side effects.”

Pregabalin, gabapentin and duloxetine appear as preferred agents in most guidelines, Dr. Lubenow said. Other agents frequently recommended include sodium valproate, oxycarbazepine, venlafaxine, amitriptyline, dextromethorphan tramadol, morphine, oxycodone and capsaicin.

For patients with recalcitrant pain, spinal cord stimulation and intravenous infusion may be viable alternatives.

There are data supporting the use of I.V. lidocaine, bisphosphonates, phentolamine and immunoglobulin, said Philip Peng, M.B.B.S., Professor of Anesthesiology and Pain Management at Toronto Western Hospital, University of Toronto. But the duration of analgesia tends to be short, and severe adverse events are common.

Ketamine is one of the most promising I.V. agents for neuropathic pain, he said. Most studies use 50 mg or less infused over 30 minutes to two hours and the analgesic effect lasts less than two days. Trials using larger doses over longer infusion periods show much greater effect.

A study using anesthetic doses infused over five days showed significant pain relief up to six months following treatment, but there were significant psychotropic effects, muscle weakness and infections. Later trials using lower doses showed less severe adverse events but also less analgesia.

Early data from a Toronto Western Hospital trial using six-hour outpatient infusions for five days showed slightly more non-responders than responders, Dr. Peng reported. But responders showed greater than 50 percent pain relief up to three months after treatment.

“Responders tend to have less pain by the end of the second day,” he said. “At this point, we have no good tool for predicting responders. We are hoping for more robust data as the protocol progresses.”

http://www.asahq.org/annual%20meeting/go%20anesthesiology%202015/asa%20daily%20news/causes%20of%20neuropathic%20pain%20guide%20treatments

Levaquin A Notorious Cause Of Neuropathy

Today's post from lawyersandsettlements.com (see link below) is yet another article about one of the fluoroquinolone antibiotics and it's relation to neuropathy. In this case, it's Levaquin and it cannot be stressed enough that if your doctor prescribes this for you, you need to question him or her as to the dangers of nerve damage as a result. If you already have neuropathy, then it's strongly advised that you seek an alternative to levaquin - there are other antibiotics available. The amount of lawsuits pertaining to fluoroquinolones is growing each month and it would be wise to bear that in mind before accepting them as treatment options.
 

Levaquin Peripheral Sensorimotor Neuropathy Strikes a Nerve
November 14, 2014, 08:00:00AM. By Gordon Gibb

San Francisco, CA: It’s bad enough when a manufacturer is alleged to have known about a potentially serious side effect and didn’t tell anyone about it. When you finally face the music and include Levaquin side effects on product labeling, it helps to be thorough and upfront with just how bad things can get.

In August 2013, the US Food and Drug Administration (FDA) decided that a Levaquin label warning - and similar warning labels for all drugs in the fluoroquinolone antibiotic class - didn’t go far enough against the potential for Levaquin Peripheral Sensorimotor Neuropathy.

There is little doubt that fluoroquinolone drugs such as Levaquin are extremely effective in knocking a serious or persistent bacterial infection out of a patient’s system. No fewer than 23.1 million prescriptions for fluoroquinolone tablets (ingested orally) were written in 2011.

Many a Levaquin Antibiotics Lawsuit have accused manufacturer Johnson & Johnson (J&J) of withholding important safety information, and doing so for some time. One plaintiff, Karyn Joy Grossman, alleges that J&J had known about the potential for Levaquin Peripheral Sensorimotor Neuropathy as early as 1992. For its part, the FDA finally got with the program and mandated a warning for all fluoroquinolone antibiotics with regard to the potential for Peripheral Sensorimotor Neuropathy. That was in 2004.

Nine years later, the FDA was back with a more thorough warning alluding to the possibility of severe nerve damage that could be permanent.

There is plenty of reason for concern. The rate of Levaquin Peripheral Sensorimotor Neuropathy could not be identified or calculated, according to the FDA. There are also no identifiable risk factors that patients, were they aware of their particular individual risk, could weigh when considering the use of a fluoroquinolone such as Levaquin. There is no age range that is a greater or lesser risk than any other.

Levaquin Peripheral Sensorimotor Neuropathy can emerge as quickly as a few days following treatment with a fluoroquinolone or delayed by more than a year. A patient could literally wake up one morning, without warning, with the grievous Levaquin side effects.

READ MORE LEVAQUIN LEGAL NEWS

A New Outlaw in the Levaquin Side Effects Corral
The Fluoroquinolones Community—and Their Leader Mark Girard
Investment Firm Wants Johnson & Johnson to Be Accountable for Levaquin Side Effects

Grossman, in her Levaquin lawsuit, asserts that “the warning label for Levaquin during the period from September 2004 through August 2013 misled Plaintiff and her treating physician by incorrectly advising patients and physicians that peripheral neuropathy associated with Levaquin was ‘rare’ and in any case could be avoided by discontinuing the drug upon the onset of certain symptoms.

“The truth, however, is that the onset of irreversible peripheral neuropathy is often rapid and discontinuation of the drug will not ensure that the peripheral neuropathy is reversible.”

Karyn Joy Grossman’s lawsuit was filed August 6 in US District Court for the Northern District of California. Defendants include Ortho-McNeil-Janssen Pharmaceuticals, Inc.; Johnson & Johnson Pharmaceutical Research & Development, LLC; and Johnson & Johnson and McKesson Corporation.

The Levaquin lawsuit is Grossman v. Johnson & Johnson et al, Case No. 3:2014cv03557.

http://www.lawyersandsettlements.com/articles/levaquin/levaquin-antibiotics-lawsuit-side-effects-2-20244.html#.VIMl43vGC-5

International Day Of Persons With Disabilities

Today's post from paindoctor.com (see link below) talks about something that may have slipped your attention a couple of weeks ago. It slipped your attention because it wasn't announced on world news desks, thus revealing how much importance the media placed on the story!! You may wonder what it has to do with neuropathy, as the vast majority of people living with neuropathy and the vast majority of the public, probably don't see neuropathy patients as 'disabled'. However, when the symptoms of neuropathy result in chronic pain, or discomfort, or affect the way you react to sensory impulses including walking normally, you are to some extent 'disabled' and are entitled to be included in that category. The UN does include people suffering from chronic pain and as such a day like this is important for neuropathy patients, sick of being ignored or not taken seriously. It's just a pity that the media didn't see it as necessary to inform the public!

Observing The International Day of Persons With Disabilities
By Joe Carlon| December 3rd, 2014

Over one billion people in the world live with a disability. Some of these disabilities are visible, but others are hidden. The United Nations has designated December 3, 2014 as International Day of Persons With Disabilities. This year’s theme is “Break Barriers, Open Doors: For An Inclusive Society And Development For All.”

Disability disproportionately affects the poorest populations of the world, preventing them from accessing education and employment. Disabled persons in developing countries face extraordinary barriers to full participation in society. They lack access to healthcare, legal services, and other basic provisions that could benefit them. Without equal access, their voice cannot be heard. Indeed, there is very little mention of addressing issues of access and equality in the development plans of most nations.

In 2011, the United Nations General Assembly held a High Level Meeting on Development and Disability (HLMDD) that involved heads of state. The theme for this meeting was “The way forward: a disability inclusive development agenda towards 2015 and beyond.” Its goal was to outline strategies to begin to make sure that inclusion was on the agenda for the development of nations.

The HLMDD also looked forward to the time after the achievement of the Millennium Development Goals (MDGs). These goals are:

Eradicate extreme hunger and poverty
Achieve universal primary education
Promote gender equality and empower women
Reduce child mortality
Improve maternal health
Combat HIV/AIDS, malaria and other diseases
Ensure environmental sustainability
Develop a global partnership for development

All of these goals are directly related to equality for persons with disabilities, but they did not occur in a vacuum. In 1982, nearly 20 years before the MDGs, the UN outlined three areas to focus on for persons with disabilities. Called the World Programme of Action, the three areas that they hoped to address and improve were prevention, rehabilitation, and equalization of opportunities.
Prevention

The MDGs specifically address maternal health and the eradication of hunger and poverty. These two areas can be a factor in disabilities that occur as a result of improper fetal nutrition.
Rehabilitation

Universal primary education is a tool that can help to better identify and remediate learning disabilities and other “invisible” disabilities. Empowering women to seek these opportunities out will also help with rehabilitation efforts.
Equalization of opportunities

Equal opportunity is a main theme in the MDGs, and the World Programme of Action believes that equality and empowerment need to be a crucial part of any plan for development in nations across the world.

The World Programme of Action initiative formally ended in 1992, but the effects of its strategies have shaped the UN’s work in developing countries and informed their policies when designing the MDGs. This year’s International Day of Persons with Disabilities theme “Break Barriers, Open Doors” reiterates the UN’s commitment to opening access for all, regardless of ability. This commitment is crucial, as is understanding of the different types of disability.

Visible disabilities are universally recognized and can include:
 
Vision loss
Cerebral palsy
Para/quadriplegia
Loss of limb
Down’s syndrome
Other disabilities that requires visible ambulatory assistance (wheelchair, crutches, etc)

Invisible disabilities are more complex and often are not recognized or acknowledged in a discussion about disability. These are conditions that are not immediately apparent, but are just as important to recognize on the International Day of Persons with Disabilities.

The list of invisible disabilities can include:

Mental disorders
ADHD
Autism or Asperger’s
Hearing loss
Dyslexia
Post-traumatic stress disorder
Chronic pain

A previously healthy person can develop an invisible disability that is just as serious as a visible one. This can result in a lowered quality of life and fewer opportunities. A person with dyslexia may have difficultly succeeding in school. Someone with chronic pain may have bad days that make steady work impossible. Post-traumatic stress disorder colors every aspect of a person’s interaction with the world. These are only a few examples of how invisible disabilities can hinder a person and hold back a nation.

Support for people with disabilities can be complicated, as their needs can change over time. When someone is first diagnosed with a disability or sustains a disabling injury, their needs will be much different than someone who has been living with a disability for a long time. There are a few general rules for supporting people with disabilities.

Treat disabled persons as you would treat anyone else

Mind your manners and don’t stare, talk condescendingly, or assume that you must help with everything. Many persons with disabilities are extraordinarily capable of everyday tasks and do not need your help, however well-intentioned.
Do not stigmatize disabled persons or their disability

Disability is not something to be ashamed of. It helps to think of the term “differently abled” rather than “disabled.” The first connotes differing strengths, while the second seems more negative and judgmental.

Do not make assumptions regarding ability

This is an especially useful thing to keep in mind with regard to invisible disabilities such as learning disabilities, autism, or Asperger’s. There is a high incidence of giftedness that occurs simultaneously in people with Asperger’s and ADHD. A learning disability does not always equal a lack of ability.
Focus on what disabled people can do, not what they can’t

This comes from a place of acceptance and abundance rather than scarcity. An example of this is Stephen Hawking, a renowned physicist who cannot walk, talk, or move. Focusing on only his challenges would deny the world of his exceptional mind.
Stand up for disabled people, and teach your children to do the same

There are bullies who will take any opportunity to demean and devalue people who are different. If you see that happening, say something if it is safe to do so. Teach your children compassion, acceptance, and understanding so that they will do the same.

Be a friend

Be the same friend for a disabled person as you would for a person without disabilities. Invite them out, laugh, cry, and joke around. Know that everyone has good days and bad days and not all are related to the disability. For people who struggle with depression and anxiety especially, stay in their lives, even when they push you away. Love them as they are.

There are many support services for persons with disabilities, their families and friends. Disability.gov is a great place to start for information on disability programs and services in the United States. Disabled People’s International is another organization that provides support and advocacy worldwide.

On December 3, 2014, join the world in celebrating the International Day of Persons With Disabilities. Find out about events happening all around the world, and join in to spread awareness!

http://paindoctor.com/observing-international-day-persons-disabilities/

Three Ways Of Dealing With Chronic Neuropathy Pain

Today's post from princessinthetower.org (see link below) is a self-help article designed to help you reduce your suffering by non-medical means - i.e. psychology. Now I know that many of you hate this sort of post with a vengeance but the trouble with extended clichés, is that they irritatingly contain so much truth and that's the case here. So this sort of mind-yoga can really help if you accept that many of the platitudes really do apply in your case, - however much you may not want them to. Forget the preconceptions; read it and see if there are one or two tips that could genuinely help you live better with your neuropathic pain - you may surprise yourself. For non-cynical, self-help and motivational-thinking fans - this article is one of the better approaches to dealing with pain.

3 Ways to Weather the Internal Storm of Chronic Pain and Not Let it Define You
February 13, 2015 by Princess 

Pain is so all-encompassing, so constant, and overwhelming, it can be difficult to detach the pain from everything else in life, especially when it so deeply affects everything in life. From the outset, it may appear as if we entirely define ourselves by our pain. After all, it needs to be considered before, during, and after every task or activity, even the most passive activity. But this is part of managing our chronic pain, trying to live, and cope as best we can in spite of the pain.

When the pain takes over more than your body but your mind and spirit too, it’s natural to become depressed or struggle with our feelings and perception of ourselves. When so many dreams are reluctantly let go of because, now, after perhaps many years of pain, they cannot come true, it can be even easier to define ourselves as the ‘one with pain’.

Yet in doing so, letting go of the you that’s you, even subconsciously, as you navigate the lunacy that is living with a severe pain condition leads to a different kind of internal imbalance. Sadness, depression and even heavier thoughts about all the pain has affected, or taken away can churn relentlessly in your mind but only serve to make you feel worse. If your thoughts are churning like the darkest of skies, try the 3 techniques to help you calm the internal storm below.

Your Pain Does Not Define You

Pain may have made you sad, angry, feeling hopeless, and lost, or made your temper short at times, but pain is designed to get your attention, to make you take notice. Obviously with acute pain this is useful but with chronic pain the signals are on a vicious loop. There’s no reason for your body to be firing these excruciating signals but as it believes there is a problem, and danger, it reacts just the same.

Be kind to yourself not hard on yourself for even the strongest are weakened by pain, whether that’s hidden or not. Constant pain is like a toddler forever tugging at your skirt, and even the most compassionate of mothers would lose their calm equipoise after a decade or more of skirt-tugging. OK the metaphor doesn’t quite articulate the lunacy or limitations, the loss or the lack of living, or the seemingly insurmountable strength needed to keep going, keep surviving, in spite of pain, but attention-wise, it’s a constant pull. That alone would test the strongest of souls.

“It is true that pain often changes people,” says Dr. Linda Ruehlman, social/health psychologist and director of the Chronic Pain Management Program. “You may have lost some of the positive abilities that defined you. These losses are powerful and sad, and coming to grips with them is a process that will likely take some time. Don’t let the pain overwhelm your image of who you are. Sometimes thoughts can be so negative that you may have trouble realising that pain doesn’t define you.”

Remember What You Like About Yourself

Chronic pain and illness impacts everything so it’s entirely human to feel that you are ‘not yourself’. You may feel that others are also treating you like ‘the one with pain’, as opposed to the ‘old you’. In changing how you are treated by loved-ones can have such a huge effect. It acts like a subconscious confirmation that things will never be the same and you must now be this ‘ill person’.

You may even feel a sense of shame in having your condition, when our body doesn’t serve us as society leads us to believe, that is, it doesn’t ‘get better’, we can feel a sense a failure, no matter how unjust. “While you are adjusting to any temporary or possibly enduring losses or changes that are part of your chronic pain, don’t forget that you still have positive qualities,” says Dr. Linda Ruehlman.

“Remembering the positive may help you to cope and may decrease depressing thoughts. It can be easy to focus on the negative at the expense of the positive. Take some time to review what you still like about yourself.” You may have a great sense of humour but have become disconnected from that lighter side of life because of pain taking over. You may have stopped doing things you love, but in losing that part of you, you’ve lost a little more of yourself.

You Are Not Your Pain

Your pain may try to define you, it may, and likely has taken over your every waking moment, every sleeping moment too. We may not be what happens to us but must survive it. We are not the grief we feel, nor anger, loneliness or even loss. We are not the dark, rumbling storm that is our constant pain and sadness but we must weather it.

That weather may be, and probably is, the worst weather in the world but even on the most difficult days, even on your darkest days, the toughest, most challenging nights too, how you speak to yourself, the compassion you have for yourself, and ability to allow your feelings room to be expressed through all the challenges is crucial to wellbeing, resilience and your ability to cope.

Those storms might have run wild and torn through the skies of our lives, ripped out forests of hope and destroyed all in its wake but even then, we are not the storm. To paraphrase Pema Chödrön, we are the sky, everything else is the weather. No matter how you are feeling right now, you are not your illness. By virtue of being here and living through this at all, you are a miracle, made all the more miraculous for being so strong.

No matter the intensity of this particular storm, you’ll weather it. You’re weathering it right now. The storm may never completely abate but the worst days do improve, flare-ups do lessen, even the darkest days do eventually allow in a little light. Even the deepest despair will lift, even if only momentarily. You might be affected, made stronger, or even weaker but that’s not the point. The point is you’re already surviving, already weathering the storm like a champ. But if its a little too wild right now, read on.

If your thoughts are churning like the darkest of skies, here are three techniques to do calm the storm and cope with your internal weather.
Here are 3 ways to calm the internal storm of living in pain:

Calming the Storm with Visualisation

You are not your feelings or your moods, you are not your depression, your anxiety, your frustrations. You are not your pain. Make a regular practice of mentally stepping back form difficult feelings or dark thoughts when they occur. One technique used in Acceptance and Commitment Therapy is to distance yourself from the thoughts, to not engage with them by using this visualisation.

When the incessant chatter seems unending is to imagine your thoughts as leaves on a stream. Allow yourself to pause, breathing gently, evenly and smoothly, and visualise your thoughts as leaves floating down the stream. As the leaves are slipping by, watch without touching them or picking them up and thus engaging with them. Simply allow the leaves to float down the stream without affecting you and keep breathing, calm and present.

An alternative to this effective technique to visualise these feelings as passing clouds in an otherwise blue sky. See them pass, name them should it help you, then watch them pass without connecting to them. Let them go. Instead of stopping each thought, you allow it to pass by untethered, with you, in serene stillness watching the sky. Using Pema Chödrön’s quote is an empowering way to see this challenging situation, the lost life, and your response and feelings about it all.

“You are the sky. Everything else – it’s just the weather.” ~ Pema Chödrön

Calming the Storm with Psychology

The following techniques are designed to help you learn to recognise the thoughts that only serve to increase your suffering and keep you trapped in the darker places. I’ll expand on this more deeply but the first step in healing unhelpful thinking is simply to be aware of what you are thinking. Simplistic as it sounds, when you pause to notice what your mind is saying it creates a space between you and your thoughts, in turn affording you the opportunity of choice.

Worst case scenario worries make it even harder to cope with chronic pain, more difficult to sleep at night, and also create such a increased level of tension that it is difficult to calm your pain, relax or feel any kind of joy. You may be having difficulties coping, not to mention years of ‘evidence’ that the pain is getting worse or your future is bleak but focusing on that, going over and over that in your head, not only makes you feel worse but increases your physical pain too.

The following technique is borrowed from ACT (Acceptance and Commitment Therapy), which was developed from CBT (Cognitive Behavioural Therapy), and there is power in its simplicity. When your inner voice is telling you that it’s hopeless, that you’re getting worse, not coping, never going to improve or manage, or have [insert goal/hope/dream here], name the thought and say to yourself, “Ooh here’s the ‘I’m never going to improve/manage/cope/only getting worse’ ‘story’ again”.

Worst case scenario worries make it even harder to cope with #chronicpain.

The thought may still exist but after you redirect your focus to the present moment, you do not become caught up by it, follow it, end up on one of those horrid trains of hopelessness and depressing thoughts that only serve to make you feel a thousand times worse. See it as a story you tell yourself. If you feel stronger emotionally, you can handle things with more ease.

Another technique from psychologist Dr Russ Harris, author of ‘The Happiness Trap’ is to insert the phrase “I’m having the thought that…” in front of whatever negative thought you are having. The idea being that in doing so you see your thoughts to be just a collection of words that you are telling yourself so you are able to distance yourself from them.

Calming the Storm with Meditation

You may be put off meditation, or may have tried it and found that it wasn’t enjoyable at all, or simply too difficult to quieten the mind when in so much pain. Meditation is an essential part of my personal pain management but for many new to the practice, it is difficult to still the mind and quieten that busy internal chatter of thoughts.

If you’ve never meditated before but have heard of the many benefits for chronic pain patients, physical, emotional, spiritual, and neurological, and want to begin, one way to make it easier is to use a mantra or phrase to focus on, such as that of Pema Chödrön’s quote, “You are the sky. Everything else – it’s just the weather.” Having something use as a focus on is a useful tool to train your mind to meditate with far more ease.

Meditation can be like exercise to someone [blessed with mobility] who is unfit. When start the initial exercises, it’s hard and they may be put off by this, even quit. But just as they can soon increase their fitness and work out with more ease, you too in the practice of meditation will find the thoughts do diminish with a little perseverance, and it swiftly becomes far easier to do, and crucially, more enjoyable.

Focus on the breath, breathing gently, smoothly, evenly. Simply repeat that mantra or another phrase that is soothing to you. It could be “I am here, I am still”, or a single word, like “calm”, in your mind, as you sit or lie down if sitting is not physically possible or too painful, in stillness. It helps in the learning stages to use meditative aids, such as using soothing music, low lighting, or scenting the room with some essential oil or incense. Find what works for you and preserver, the ease does come and when it does, you’ll have added another powerful tool to your pain management kit.

Take comfort in the fact you are not alone. Handling pain at all is handling it well, and you, by virtue of being here at all, are handling it miraculously.

Handling pain at all is handling it well. #chronicpain #painsupport

http://princessinthetower.org/how-to-weather-the-internal-storm-of-chronic-pain-and-not-let-it-define-you/

Low Level Laser Repair Of Insulation Around Damaged Nerves

Today's post from thediabeticnews.com (see link below) brings us back to the use of light (or more specifically here...lasers) to treat nerve damage. In this case, it's refreshing to see that the therapy is aimed at repair rather than simply lessening symptoms, although if the treatment works, symptoms are automatically lessened. The theory is that laser treatment has been found to activate repair of the myelin sheaths around nerves. As you probably know, myelin sheaths are the insulation around nerves that prevent 'short-circuiting'. Just as in a household wiring system, short circuits (and therefore pain) occur when insulation is damaged and the wires come into contact with outside influences. It's more or less the same with the nervous system. Apparently. laser treatment also positively affects mitochondria (the energy packs that drive cellular activity) which in turn, stimulates repair of the myelin. It's another lab study unfortunately but the rats are proving the theories to be true and if this translates to humans, then neuropathy patients will be on the verge of a major breakthrough in the treatment of their pain. A fascinating article...well worth a read.

Phototherapy Used to Combat Neuropathic Pain
April 7, 2017 Source: Fundação de Amparo à Pesquisa do Estado de São Paulo

As diabetes progresses, the structure of the sciatic nerve’s myelin sheath changes – but after four sessions of laser therapy treatment, researchers found that the myelin had almost completely recovered.

Low-level laser therapy has been shown by recent studies to be a non-invasive and effective alternative for treating neuropathic pain, a chronic condition caused by nerve damage, spinal cord injury or diseases such as diabetes.

Recent studies performed at the University of São Paulo’s Biomedical Science Institute (ICB-USP) in Brazil helped elucidate the mechanisms behind the effect of low-level laser therapy.

This research has been conducted as part of a project supported by FAPESP, with Professor Marucia Chacur as the principal investigator.

“We tested laser therapy in different rat neuropathy models, and behavioral responses improved in all of them,” Chacur told. “One of the beneficial effects observed was myelin sheath recovery. The myelin sheath is a lipid layer that covers the axon and acts as electrical insulation to assist nerve impulse propagation.”

The treatment in a model of diabetic neuropathy, one of the most common chronic and incapacitating complications of diabetes was tested.

The problem occurs when the disease is not properly controlled and excessive amounts of blood sugar cause oxidation of the myelin sheath, damaging the structure of peripheral nerves. As well as causing pain, this degenerative process impairs communication among neurons and can even lead to amputation of the lower limbs.

To induce a condition similar to type 1 diabetes, the researchers injected the rats with streptozotocin (STZ), a chemical that destroys the insulin-producing beta cells of the pancreas. In this model, the animals became diabetic approximately one week later.

“We began the treatment after 45 days, when the neuropathic condition was well-established and had become chronic,” Chacur said. “We used a 904-nanometer laser, which can penetrate deep into tissue.”

The degree of pain was evaluated before and after the start of treatment by behavioral tests such as the von Frey hair test, in which nylon filaments of different thicknesses are pressed against the rat’s paw. Each filament represents a force in grams and indicates the pressure tolerated without signs of discomfort. There are similar tests that use thermal and mechanical stimulation.

“We plan to apply the technique to humans, so we used similar therapeutic protocols,” Chacur said. “We initially scheduled ten sessions of phototherapy applied to the thigh every ten days, each lasting one minute, but we observed an improvement shortly after the fourth session and sacrificed the rats to analyze their sciatic nerves.”

With the aid of a transmission electron microscope, the researchers found that as diabetes progressed, the structure of the sciatic nerve’s myelin sheath changed. After four sessions of the treatment, however, the myelin had almost completely recovered.

“The condition of the nerve practically returned to baseline levels after treatment. We’re now continuing the study by analyzing protein expression and the release of inflammatory cytokines to understand exactly what’s happening,” Chacur said.

In another study, treatment again focused on the sciatic nerve, but the injury was induced by compression to simulate what happens in patients with spinal stenosis or disc herniation.

“The nerve was ligated and kept compressed for two weeks until the injury became chronic. Phototherapy began on the 14th day,” Chacur explained. “Shortly after the second session, we observed a behavioral improvement, which persisted until the end of the treatment.”

After the tenth session of phototherapy, the animals were sacrificed for analysis of the dorsal root ganglion, a cluster of nerve cell bodies located in the posterior region of the vertebrae along the spinal cord and conveying sensory and motor information.


This News Story Continues Below

The researchers used immunoblotting to scan the dorsal root ganglion for the presence of astrocytes, star-shaped cells that play an active role in brain function and inflammatory responses.

“Astrocytes are the first type of cell to migrate to the site of a nerve injury or inflammatory process,” Chacur said. “They’re like a sort of macrophage for the central nervous system, the first line of defense.”

The analysis showed smaller numbers of astrocytes in rats treated with laser therapy than in untreated rats.

“These cells release several inflammatory mediators, including interleukin-1 (IL1), tumor necrosis factor alpha (TNF-α) and glutamate. These mediators in turn trigger the release of other inflammatory substances. We believe the laser curtails this chain reaction as if it were anti-inflammatory medication, by reducing the migration of astrocytes to the site of the injury,” Chacur said.

The next step is to measure the concentration of each inflammatory substance separately, she added. The third model used to test low-level laser therapy focused on orofacial pain. In this model, a lesion was induced by crushing the inferior alveolar nerve, one of the branches of the trigeminal nerve responsible for innervating the face.

“This type of injury can occur during extraction of a wisdom tooth, for example. Many dentists are using low-level laser therapy for patient pain relief,” Chacur said.

Phototherapy began two days after the nerve was injured. An improvement in pain-related behavior was observed after two sessions and persisted throughout the treatment, which comprised ten sessions (one every two days).

The animals were sacrificed, and then Western blotting was used to analyze the treated tissue for the presence of certain proteins.

“We set out to understand the mechanisms and mediators involved because we believed phototherapy could be used in association with pharmacological treatment because it acts via a different pathway. In this way, it may be possible to reduce the drug dose and mitigate the systemic effects of the treatment,” Chacur said.

The results suggest that all three models of neuropathic pain studied share a common mechanism involving myelin sheath regeneration and reduced astrocyte migration to the site of the lesion, she added.

“Evidence in the literature also suggests an effect on mitochondria. The laser apparently facilitates the flow of calcium in these organelles, boosting production of ATP [adenosine triphosphate, the body’s cellular fuel] and leading to enhanced healing as well as the release of mediators that assist remodeling. In future studies, we plan to investigate this effect on mitochondria more thoroughly,” Chacur concluded.


Photo credit: OpenStax Anatomy and Physiology

Journal: Lasers in Medical Science

Funder: São Paulo Research Foundation

http://thediabeticnews.com/phototherapy-used-to-combat-neuropathic-pain/

Is Metabolic Neuropathy Much Different To Other Forms Of Nerve Disease

Today's post from nytimes.com (see link below) is an article that may help clear up one of the many problems people have with the language of neuropathy. A patient new to the disease may be diagnosed in terms that leave him or her bewildered and because the neurological vocabulary used by doctors is so broad, you may not be aware precisely what your diagnosis means in relation to other forms of neuropathy. Take the subject of this article for instance. You'd be forgiven for thinking that 'metabolic' neuropathy is a completely different form of nerve damage to other common neuropathies, when in fact it's another general term describing pretty much the same symptoms and problems that millions of others have. Metabolism (change) is life-sustaining chemical transformations within the cells of living organisms. There is an argument that all neuropathies are metabolic in nature but the word in itself shouldn't confuse you:- if you have metabolic neuropathy, you have neuropathy, in the same way that millions of others have. It's very often used in connection with diabetes and is therefore attached to diabetic neuropathy because that's the most common neuropathic cause. Diabetes is a metabolic disease, because it affects the body’s ability to capture glucose from food for use by the cells. You're probably more confused than ever now (I haven't explained it very well - apologies😓) but the symptoms and treatment are very much the same as other forms of neuropathy, peripheral or not and metabolic or not.

Metabolic Neuropathies
Metabolic neuropathies are nerve disorders that occur with diseases that disrupt the chemical processes in the body.

Causes

Nerve damage can be caused by many different things. Metabolic neuropathy may be caused by:
A problem with the body's ability to use energy, often due to a nutritional deficiency
Dangerous substances (toxins) build up in the body

Diabetes is one of the most common causes of metabolic neuropathies. People who are at the highest risk of nerve damage from diabetes include:
Those with damage to the kidneys or eyes
Those with poorly controlled blood sugar

Other common metabolic causes of neuropathies include:
Alcoholism
Low blood sugar (hypoglycemia)
Kidney failure
Porphyria
Severe infection throughout the body (sepsis)
Thyroid disease
Vitamin deficiencies (including vitamins B12, E, and B1)

Some metabolic disorders are passed down through families (inherited), while others develop due to various diseases.

Symptoms

These symptoms occur because nerves cannot send proper signals to and from your brain:
Difficulty feeling in any area of the body
Difficulty swallowing
Difficulty using the arms or hands
Difficulty using the legs or feet
Difficulty walking
Pain, burning, pins and needles, or shooting pains in any area of the body (nerve pain)
Weakness in the face, arms, legs, or other area of the body

Usually, these symptoms start in the toes and feet and move up the legs, eventually affecting the hands and arms.

Exams and Tests

An exam may show:
Decreased feeling (may affect touch, pain, vibration, or position sensation)
Reduced reflexes (most common in the ankle)
Muscles becoming smaller (atrophy)
Muscle twitches (fasciculations)
Muscle weakness
Loss of movement (paralysis)

Tests used to detect most metabolic neuropathies:
Blood tests
Electrical test of the muscles (EMG)
Electrical test of nerve conduction

Treatment

For most metabolic neuropathies, the best treatment is to correct the metabolic problem.

Vitamin deficiencies are treated with diet or injections. Abnormal blood sugar or thyroid function may need medication to correct the problem. Alcoholic neuropathy is treated with alcohol abstinence.

In some cases, pain is treated with medications that reduce abnormal pain signals from the nerves (duloxetine, gabapentin, pregabalin). Lotions, creams, or medicated patches can provide relief in some cases.

Clinical trials of new medications include antioxidants, neuroprotectants, insulin-like drugs, and aldose reductase inhibitors.

Weakness is often treated with physical therapy. You may need to learn how to use a cane or walker if your balance is affected. You may need special braces on the ankles to walk better.

Support Groups

For additional information and support, see www.neuropathy.org and http://diabetes.niddk.nih.gov/DM/pubs/neuropathies.

Outlook (Prognosis)

The outlook mainly depends on the cause of the disorder. In some cases, the problem can easily be treated. In other cases, the metabolic problem cannot be controlled and nerves may continue to become damaged.

Possible Complications 
 
Deformity
Injury to feet
Numbness
Pain
Trouble walking
Weakness

Prevention

Maintaining a healthy lifestyle can reduce the risk of neuropathy.
Avoid excess alcohol use.
Eat a balanced diet.
Visit the doctor regularly to find metabolic disorders before neuropathy develops.

If you already have a metabolic problem, regular doctor visits can help control the problem and reduce the chance of further nerve damage.

Patients who already have metabolic neuropathy can reduce the risk of some complications. A foot doctor (podiatrist) can teach you how to inspect your feet for signs of injury and infection. Proper fitting shoes can lessen the chance of skin breakdown in sensitive areas of the feet.

References

Shy ME. Peripheral neuropathies. In: Goldman L, Ausiello D, eds. Cecil Medicine . 23rd ed. Philadelphia, Pa: Saunders Elsevier; 2007:chap 446.

Montfort EG, Witte A, Ward K. Neuropathic Pain: A Review of Diabetic Neuropathy. US Pharm . 2010;35(5):HS8-HS15.

http://www.nytimes.com/health/guides/disease/metabolic-neuropathies/overview.html

The Depressing Failures Of Nerve Pain Medications

Today's post from doctorslounge.com (see link below) presents a now depressingly familiar conclusion, that most drugs used to treat nerve pain simply aren't good enough and considering the potential for side-effects, are little better than placebos. In this article, you'll read a list of drugs most people with long-term neuropathy have already tried. Not only that, but people progress along a line of standard treatments, taking in potentially dangerous medication, sometimes over many years and with hardly any areas of improvement at all. The conclusion is that we need new drugs for nerve pain and we need them quickly but they were saying that thirty years ago as well. Meanwhile the patient is the one that suffers, both physically and mentally as hopes are once again dashed by conventional science failures. If only we had the energy for a revolution!!

What Drugs Work Best for Diabetic Nerve Pain?
Last Updated: March 24, 2017. (HealthDay News)

Data review shows some meds help more than others, but better options still needed

 -- Nerve pain and numbness, also known as neuropathy, is a debilitating but common symptom of diabetes.

Now, new research suggests certain drugs may outperform others in treating diabetic neuropathy.

The new review of the data on the subject was led by Julie Waldfogel of Johns Hopkins Hospital in Baltimore. Her team noted that about half of people with diabetes have some form of nerve damage caused by high levels of blood sugar.

However, not all of them will have symptoms such as pain, numbness and tingling in the legs and feet.

In the new study, the Hopkins group reviewed 106 studies on pain relief for diabetic neuropathy. The researchers found "moderate" evidence that the antidepressants duloxetine (Cymbalta) and venlafaxine (Effexor) reduce diabetic nerve pain.

However, they only found "weak" evidence that botulinum toxin (Botox), the anti-seizure drugs pregabalin (Lyrica) and oxcarbazepine (Trileptal), and drugs called tricyclic antidepressants and atypical opioids (drugs such as Tramadol) may help reduce pain.

The researchers also noted that gabapentin (Neurontin, Gralise) works in a similar manner to pregabalin, and the review found gabapentin no more effective than a placebo.

Long-term use of standard opioids -- such as OxyContin, Vicodin or Percocet -- is not recommended for chronic pain due, including neuropathy, because of a lack of evidence of long-term benefit and the risk of abuse, misuse and overdose, Waldfogel said.

The anti-seizure drug valproate and capsaicin cream were also ineffective, according to the review published online March 24 in the journal Neurology.

The review was funded by the U.S. Agency for Healthcare Research and Quality.

"Providing pain relief for neuropathy is crucial to managing this complicated disease," Waldfogel said in a journal news release.

"Unfortunately, more research is still needed, as the current treatments have substantial risk of side effects, and few studies have been done on the long-term effects of these drugs," she added.

Two experts in diabetes care and pain management said the data review is important information for patients.

"This trial was a much needed step in the right direction in an otherwise murky field of medicine," said Dr. Caroline Messer, an endocrinologist at Lenox Hill Hospital in New York City.

She noted that "traditional teaching for endocrinologists has always included the use of gabapentin for diabetic neuropathy. Given gabapentin's host of side effects, it will be a relief to remove it from the toolbox."

And Messer added that "venlafaxine is now an interesting treatment possibility, given that one of its common side effects, weight loss, could prove useful for patients with type 2 diabetes."

Dr. Ajay Misra is chair of neurosciences at Winthrop-University Hospital in Mineola, N.Y. He noted that neuropathy can differ for people with type 1 or type 2 diabetes, with neuropathy levels correlating well with blood sugar management in people with type 1 disease, but not as well for those with type 2 diabetes.

As for pain relief, Misra said "there is clearly no medication which was found to be highly effective" in the new review, so there is clearly a need for research into better analgesic options for patients.

"We hope our findings are helpful to doctors and people with diabetes who are searching for the most effective way to control pain from neuropathy," researcher Waldfogel added. "Unfortunately, there was not enough evidence available to determine if these treatments had an impact on quality of life. Future studies are needed to assess this."

More information

The American Diabetes Association has more on nerve damage from diabetes.

SOURCES: Caroline Messer, M.D., endocrinologist, Lenox Hill Hospital, New York City; Ajay Misra, M.D., chairman, department of neurosciences, Wintrhop-University Hospital, Mineola, N.Y.; Neurology, news release, March 24, 2017

https://www.doctorslounge.com/index.php/news/hd/70923

A Better Understanding Of Both Doctors And Patients Situations

Today's post from health.com (see link below) is pretty much a plea to give doctors a break. As neuropathic patients often in chronic pain and discomfort, we can get frustrated at our doctors' apparent lack of answers; especially if their bedside manner is also somewhat lacking. This article points out a few of the reasons why doctors need to be let off the hook now and then because of the stresses they're under from time management and a results culture. That's not to say that we shouldn't stand our ground now and then and refuse to accept shoddy medical attention but understanding a doctor's predicament will gain their appreciation and lead to better treatment anyway.

How to Get Your Doctor to Take Your Pain Seriously. How to get the treatment you need 

Last Updated: February 29, 2016

 

Good chronic pain treatment can be hard to find. A chronic pain patient has every right to believe that his or her doctor will listen sympathetically and prescribe the appropriate treatment, but that is not always the reality. Truth is, many doctors have not been trained to deal with the complex, changing area of chronic pain treatment. One 2001 survey of primary care physicians' attitudes toward prescribing certain medications found that only 15% said they enjoyed working with patients who have chronic pain.
This can lead to frustrating encounters at the primary-care level, especially if your doctor is rushed.

Pressures on doctors

"Doctors don't want patients to suffer, they want people to get better," says Bill McCarberg, MD, founder of the Chronic Pain Management Program at Kaiser Permanente in San Diego. "But they feel stress, they feel time constraints, they have to deal with pre-authorizations, it's not the kind of practice they wanted. They're stressed, and that leads to moving patients along."

"As a doctor in today's medical system, it's difficult to deal with chronic pain conditions," agrees S. Sam Lim, MD, a rheumatologist at Emory University School of Medicine in Atlanta. "Most practices are forced to see a certain number of patients in a limited amount of time. [With chronic pain] it's not so simple as five minutes, a few questions, and handing out a pill. It takes some time. And our system isn't set up for that."

"The patient needs to realize that the doctor may not be able to discern what's going on in the first visit. Often it takes a few visits," says Dr. Lim.

Doctors are frustrated by what they can't "fix"

In 25 years of caring for her chronically sick husband, who was injured in an industrial accident, Ann Jacobs, 62, of Laramie, Wyo., has watched physicians struggle with the trial-and-error progress of his treatment. "Doctors are programmed for success stories," she says.

Meanwhile, because of its complexity, pain treatment has emerged as a separate, multidisciplinary specialty. That's good, but pain patients often need to get to a pain specialist through their primary care physicians.

Emotions can cloud the diagnosis

The emotional effects of chronic pain may also make diagnosis more difficult. Maggie Buckley, 46, from Walnut Creek, Calif., learned this the hard way. She suffers from Ehlers-Danlos syndrome, a rare genetic tissue disorder that leaves her with chronically painful joints.

"If you say 'it's really depressing and upsetting me, I'm in so much pain,'" Buckley says, "doctors will see it in terms of emotion and treat it as an emotional problem, referring you to psychiatric care or antidepressants." That is sometimes the appropriate treatment route, because antidepressants can treat chronic pain and there is a link between pain and depression, but you need to stand your ground and make sure any treatment is addressing your specific problems.

Be gentle about your pain, but be firm

It's important to be clear about your pain and explain the way it impacts your life when you're talking to your doctor. Don't be intimidated. Stand your ground, calmly.

"Patients really need to be persistent about their complaints in a way that is constructive to get across to the physician that this is something real," says Dr. Lim. "There are some physicians who are more open to listening than others. It may take a few doctors to find a marriage."

"You have to go very gently to start with," advises Ann Jacobs. "Listen to what the doctor has to say first." Then, if you're not satisfied, press harder. But remember that the most important thing is to create a relationship with your doctor in which you're a team, both looking for the best way to alleviate your pain. After he or she has assessed your needs, you can consider seeing a pain specialist.

http://www.health.com/health/condition-article/0,,20188093,00.html