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/

Can You Cope With Neuropathy Possibly!

Today's post from fithealthinsurance.info (see link below) is a nicely written advice article about coping with neuropathy. Yes it tends to lean on many of the things we've heard before about training our brains to cope with nerve pain but it doesn't speak down to you and provides a slightly different perspective, with a sprinkling of humour which you may enjoy reading. By the way, the book she mentions is not new but is a valuable resource nonetheless. Worth a look.

You Can Cope with Peripheral Neuropathy
Practical and uplifting insights from patient-expert and author Mims Cushing: August 31, 2016 

“You might not be able to manage your body the way you like, but you can manage your mind,” counsels Mims Cushing, who has been jotting down coping tips from patients and professionals since chronic nerve pain disrupted her life more than a decade ago. Those handwritten words of wisdom are now available in the new book, You Can Cope with Peripheral Neuropathy:365 Ways for Living a Better Life (Demos, 2009, $18.95).

“In 1996 my feet were constantly burning and numb,” she tells the Post. “My lifelines to sanity were The Neuropathy Association and Dr. Norman Latov—the neurologist who co-authored the book with me.”
 
The Top Ten

When neuropathy gives you fits and you’ve done your best to seek medical advice:

1: Be excited about the buzz regarding neuropathy. People don’t say, “Never heard of it” as much as they used to. There’s a sea change out there that is making it easier for 20 million people to deal with, track, and understand their condition.

Today, The Neuropathy Association (neuropathy.org) can provide the name of a specialist near you. You can receive newsletters by mail and sign up with Google Alerts for updates. Experts recognize different types of the disease and dozens of reasons for having it.

2: Be grateful. It’s hard to be stressed when you are thankful and appreciative. Stress surely makes your neuropathy worse. To be less frazzled, keep a gratitude journal. (It doesn’t have to be a Pulitzer Prize winner.) At bedtime, think about what you’re grateful for—don’t groan about what you did wrong during the day or make to-do lists. Saying “I’m so grateful,” puts a different, healing spin on your feelings.

3: Be open to everything that might help you. Which technique seems out of place: acupuncture, meditation, tai chi, or drumming? Did you say drumming? Well, all of these methods (and others) are used for healing. I beat African drums at a senior center. Maintaining a powerful, constant rhythm is meditative. People in the class say their blood pressure and pulse rates go down. And on Tuesdays when I drum, my feet hurt less.

Dr. Jerome Groopman, renowned writer and physician, suffered an accident and was in pain for 19 years. Finally, he listened to a doctor’s advice to not give in to the god of pain. After one year of initially difficult exercise, he was pain free. I recommend Dr. Groopman’s books, including The Anatomy of Hope.
Consider new ideas you may have dismissed. And when you think about things you can’t do, remember that you now have the time to do things you may not have had time to do before your neuropathy: cook special recipes, research your genealogy, study a compelling topic, write in a journal, or create an indoor container garden.
And P.S.: Perhaps you must do some things differently, such as using a walker at the mall. But you can still do them.

4: Banish toxic people. You can wail about the curmudgeons in your life, slap ’em upside the head (which I don’t recommend), or ease yourself away—the best way to deal with them. Troublesome friends or relatives can make you sad or cause you angst, both of which make our illness worse. When my friend Madelyn heard someone was driving me nuts, she said, “Don’t let her rent space in your head!” Optimistic friends can help our spirit. Author Wayne Dyer says, “Your friends are God’s way of apologizing for your relatives.” Writer Judith Orloff calls the mean people in our lives “Energy Vampires.” Maybe you must be around difficult relatives during the holidays. Is it any wonder your neuropathy worsens then?

5: Focus on something greater than yourself—volunteer. I believe people quit volunteer jobs because they haven’t found the right one. A pianist in Ponte Vedra Beach, Florida, volunteered at a local hospital and was asked to change the sheets in the Emergency Room. After a few weeks, he asked if he could go to patients’ rooms and play music on a portable piano. He found the perfect job for him.

Sometimes volunteering means listening. It’s powerful to say: “You talk. I will listen.” A man I know got some bad news from a doctor. As he was leaving, the doctor put his hand on my friend’s shoulder. And my friend suddenly felt better. The church handout, Our Daily Bread, says, “When we forget about ourselves, we do things others will remember.” And, I add, we think less about our pain.

6: Love your cabbages and caviar equally. Consider chores to be as meaningful as creative hobbies and other diversions. Next time you are ironing or emptying the dishwasher, realize that it’s of value. Don’t rush around.

7: Let the good stuff in. Floridian Eugene Richardson, a retired Lt. Colonel and brilliant man who has had neuropathy for 41 years, watches for life’s little miracles (they are all around), and not for things to worry about. Do you have UFOs, Uninvited Foolish Observations, flying around in your head? Take a break from all the craziness in the world. When you have a crummy day, write about it or have a first-class pity party. Restrict the party to seven minutes, and do it when you are alone. You will carry on longer if you have an audience. Yes, your family may need to help you in a myriad of ways, but don’t dump your complaints on them. The less you fuss, the more they’ll want to help you.

8: Be kind to your body. This does not mean eating ice cream smothered with Chicken Alfredo. But you can hurt your neuropathy by jumping on hard surfaces, or doing certain kinds of Pilates, says Dr. Alan Berger, head of neurology at Shands, Jacksonville. I’ve figured out two perfect places where we can exercise without gravity being an issue: a swimming pool and a space shuttle. I’m buying a space shuttle. They cost around $50 billion, so I may have to get it on eBay.

Keep hunting for the exercise that’s right for you. Many fitness centers offer chair-based programs, even for yoga. Just as we can choose to not read a book we aren’t enjoying, or walk out of a movie, we can decide to change exercises.

9: Enjoy your own company. Now, a great spouse is a wonderful thing. So is a true friend, someone who will listen when you call at 3 a.m. But nurturing solitude is important, too. Find your own private place of peace: a park, a beach, the mountains, or the sea. Drive there or maybe just visit it in your dreams. Find stillness in solitude, and solitude will bring you peace.

Friends are not always available. YOU, on the other hand, are always available. Don’t beat yourself up because you have neuropathy. Treat yourself like gold. If you do that, you’ll treat others like gold, too.

One of my favorite sayings from writer Mary Gordon is, “I never feel so accompanied as when I am on my own. And I have figured it out. It is because God is beside me.” Another quote I love is, “You cannot see yourself in a rushing brook, only in a pond of still water” (Zen).

10: Embrace things that can embrace you back. Money can’t. A house can’t. Nor can a car or jewels. Friends and family can embrace you, and a dog can embrace you with a wagging tail. A cat’s purr is an embrace. Laugh along with what you embrace. Remember Norman Cousins’ book, Anatomy of an Illness, about the importance of belly laughs? Still a great read. Grandchildren can make you laugh, too. One grandchild said, “Grandma, your skin doesn’t fit your face.” Another commented, “Gram, you have curly skin.” If you don’t have a source for jokes, have someone send you a bunch from the Internet.

http://fithealthinsurance.info/2016/08/31/can-cope-peripheral-neuropathy/

Coping With Neuropathy Fatigue

LtCol Eugene B Richardson continues to work tirelessly for better awareness of neuropathy and practical methods to alleviate the symptoms. In today's post from neuropathysupportnetwork.org (see link below) he talks about what to do when neuropathy drains all your strength or when your muscles just refuse to play ball. Don't let the military tone put you off - there are many good things to think about here - try to find something that works for you. Meanwhile the Neuropathy Support Network has a great deal of other information if you need it.

Fatigue and Neuropathy

Posted January 3rd, 2012 by LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS

PATIENT TO PATIENT – Disclaimer: Patient to Patient articles are intended to be educational, not diagnostic or prescriptive and the patient is encouraged to seek help from their own private physician.

Scott Berman, M.D. (Psychiatrist with CIDP) in his highly recommended book, Coping with Peripheral Neuropathy, How to Handle Stress, Disability, Anxiety, Fatigue, Depression, Pain, and Relationships, states on page 54 that “Fatigue is a fact of life for many neuropathy patients. Often our families and friends fail to appreciate this because ‘we look so good.’ In fact, in one study looking at fatigue in autoimmune neuropathy (“Fatigue in Immune-Mediated Polyneuropathies,” Neurology 53:8 November 1999, I.S.J. Merkies, et al), 80 percent of 113 patients had severe fatigue. The fatigue was independent of motor or sensory symptoms and was rated as one of the top three most disabling symptoms.”

Dr. Berman shares many practical ideas for adjusting to the realities of fatigue and insomnia in neuropathy. He serves as an officer on our Board of Directors and all proceeds from the sale of his book are donated to the Good Shepherd Rehabilitation Hospital in Allentown, PA. Scott’s book is noted in the RESOURCE tab of our website and can be ordered from there via www.amazon.com .

For decades now I have, like many of you, struggled with the fact of fatigue as one of the major components of my progressive polyneuropathy and found very little support or insight among too few medical professionals who often were more focused on what was NOT wrong rather than what IS wrong.

Poor medical attitudes toward neuropathy are still a major problem for patients in 2012! In the last two months I went on two major sites dedicated to helping patients and not one of them listed Peripheral Neuropathy as a major illness while more patients suffer from neuropathy than MS which is always listed! Why?

Recently a neuropathy patient struggling to understand the growing chronic fatigue shared his neurologists’ response and dismissive attitude as the doctor said, “take a nap” and then walked out. He asked, “Is this how far we have come in twenty years?”

So, what have I found works for me in dealing with the daily bouts of physical and mental fatigue?

FIRST, the importance of AFFIRMATION: No secret that I enjoy watching reruns of the Golden Girls TV show. Even my young grandson’s enjoy watching the humor which springs from the ordinary events of life Humor is one of the best foods for coping. Humor helps the body heal. This show brought great humor into my life with neuropathy. Then I discovered two special episodes on the recorded disc from season five. The two episodes are titled; “Sick and Tired” done in two parts, each one 30 minutes in length.

IDEA: Support group leaders and liaisons should consider using them to draw patients to support groups for discussion of the issues noted! ADVERTISE: Hear the Golden Girls on Fatigue, Failed Diagnosis and Humor at our Next Neuropathy Support Group Meeting!

You not only will enjoy the humor, but you will identify with Bea as she struggles to get a diagnosis for her chronic fatigue symptoms and an affirmation for her illness. You will identify with her mental pain when dismissed by one neurologist. You will celebrate the joy because of the healing provided by her supportive family doctor. Especially important is the scene at the end of part 2, when Bea finds a very ‘professional way’ to get her point across to the neurologist. Neuropathy patients will not feel so alone and may discover a way to laugh while watching a role model of how to respond to the dismissing doctor! If you are a neuropathy patient, you will identify and understand the emotional dynamics and you may find some healing humor to boot!

SECOND, don’t fight fatigue or apologize for it, as you are guilty of nothing. Fatigue is a real part of your neuropathy and you and your family deserve support while finding ways to live with it by adjusting your activities or discovering ways to decrease it.

THIRD, take rest periods during the day. I have found that it is not so important to go completely asleep as it is to just let your damaged sensory and/or motor nerves rest and not struggle even if for only 30 minutes.

FOURTH, I have just learned something that Dr. Latov suggests for reducing the symptoms of autonomic neuropathy and the digestive symptoms that often accompany, for example,the alternating symptoms of constipation and diarehea. REDUCE CARBS in your diet. I have discovered if I eat a breads, pancakes, waffles, and pasta, my exhaustion is WORSE especially after eating. Makes sense as blood goes to stomach to help digestion. But by reducing carbs and focusing on fruits and salads I reduce these symptoms of autonomic neuropathy, along with the fatique, especially after meals and it helped me feel a bit stronger all day!

FIFTH, if your breathing is a factor in sleeping, for whatever reason, have a sleep study done. I need to use a BIPAP machine. The neurologist explained to me that my neuropathy was affecting the nerves that help the muscles around my chest support breathing and for years I woke up with severe headaches due to lack of oxygen when I intermittently stopped breathing at night.

SIXTH, Dr. Berman’s book speaks about the factor of insomnia and I highly recommend his book and read what he shares. Between living with strong medications and pain at night, it is not surprising that neuropathy patients may be sleep deprived just when they need sleep the most. There are topical creams for any burning pain at night and solutions for the leg cramps that neuropathy patients often experience.

SEVENTH, you must continue to advocate for a DIAGNOSIS and FINDING THE CAUSE for your neuropathy. Do NOT permit a diagnosis of “idiopathic neuropathy”. Armed with your history and the testing that is available, the doctor can provide a diagnosis on the type and effects of the neuropathy, which often point in the direction of the cause. Having carried the unhelpful diagnosis of idiopathic neuropathy for decades, while my peripheral nerves where being damaged and eventually destroyed, this diagnosis only means that one needs to look further!

http://neuropathysupportnetwork.org/blog/2012/01/fatigue-and-neuropathy/

Problems With Legalising Marijuana For Neuropathy Pain

Today's post from inforum.com (see link below) is really a local news story but is symptomatic of the arguments surrounding marijuana as a medical drug. Rational argument and scientific evidence seems to strongly suggest that marijuana is one of the most effective pain medications for people living with severe neuropathy, yet outdated laws both local and national stand firmly in the way. Sometimes the punishments for possession are so severe that people are discouraged from using something that will relieve their pain. Slowly but surely, official attitudes are changing but it's a slow and painful process as this story from North Dakota illustrates.

Backers fire up attempt to get medical marijuana legalized in ND
By Helmut Schmidt on Jan 21, 2015 .

FARGO – If you ask Rilie Morgan, it’s time for North Dakota to make medical marijuana legal.

The affable silver-haired financial planner, who goes by his middle name, Ray, has neuropathy.

The neurological affliction has for the past two years given the 64-year-old Fargo man constant tingling in his feet and calves, sometimes punctuated by sharp shooting pains.

“It’s like when your hand or foot falls asleep and you get a tingling sensation. It’s constant. It’s 24/7,” Morgan said.

“If your mind is busy, then it’s not too bad. But once in a while there is some pain, a shooting pain that’s like, ‘Wow! Where did that come from?’ ” he said. “You always know it’s there.”

Morgan, a partner in a Fargo financial firm, said a painkiller he uses can cause liver damage. He used morphine for several months after a back surgery. That’s a route he doesn’t want to take again.

He said medical cannabis may make the pain “a little more tolerable. I’d like to explore the possibility anyway.”

State Rep. Pamela Anderson, a Fargo Democrat, has taken up Morgan’s cause, and introduced House Bill 1430 on Monday.

The bill would allow patients and caregivers to possess up to 2½ ounces of cannabis – or products such as cannabis oils, beverages, vapors, extracts, ointments or pills – for medical use.

It also has a provision that allows people who have obtained a prescription for medical marijuana to cultivate up to six marijuana plants.

The bill lists a number of ills eligible for treatment: cancer, glaucoma, HIV, hepatitis C, amyotrophic lateral sclerosis (Lou Gehrig’s disease), Crohn’s disease, ulcerative colitis, agitation due to Alzheimer’s disease and post-traumatic stress disorder.

Conditions that lead to wasting, severe debilitating pain or nausea, seizures, or severe and persistent muscle spasms, including those characteristic of multiple sclerosis are also listed, with an option for more to be added.

HB 1430 was crafted from information on what other states have done to regulate medical marijuana that was provided by the Council for State Governments, Anderson said.

She said she’s heard from people suffering from glaucoma, multiple sclerosis or seizures who would support legalizing medical cannabis in North Dakota.

To date, 23 states and the District of Columbia allow the use of medical cannabis, including neighboring Minnesota and Montana.

Rep. Kathy Hawken, R-Fargo, a co-sponsor of the bill, has her own connection to the issue – a son who suffers from seizures.

“More than one neurologist has said that if he could, he would prescribe medical marijuana,” Hawken said. “They think it does work.”

She said the bill contains controls on medical marijuana products from farm to pharmacy.

But she’s unsure of its fate – at least this year.

“I think it is something that will eventually pass. This session? Well, stranger things have happened,” Hawken said. “Realistically, at least the discussion will start.”

The 29-page bill provides for:
Exemptions from prosecution for the possession, manufacture or sale of medical marijuana for those licensed, and for people certified as in need of medical marijuana by a physician.
Creating a system to license manufacturing and distribution of medical marijuana products.
Criminal penalties for violating provisions of the medical marijuana law.
Protections from discrimination in schooling and housing for medical cannabis users, unless allowing the use would violate federal law or regulations.

Rep. Eliot Glassheim, D-Grand Forks, another bill sponsor, said he used to smoke a joint now and then 30 years ago.

“It seems to me the whole hysteria was misplaced,” Glassheim said.

Now, he’s being treated for cancer.

“It’s not in remission, but it’s not spreading. I feel OK,” he said. He understands that others dealing with the side effects of cancer treatments could benefit from having medical marijuana available as an option.

“I certainly could imagine a situation where you’re nauseous or where you’re in unbearable pain,” Glassheim said.

Supporting the bill, “just seemed to me to be a rational thing to do,” he said.

Glassheim expects some resistance.

“It may have to wait until next session. I expect it will pass one of these days,” he said. “It’s one of these bills people have to get their minds around.”

Morgan, meanwhile, is plan a trip to Arizona to test-drive the idea of becoming a snowbird as he nears retirement. Arizona also allows medical cannabis to treat a number of ailments, he said.

But he will hop on a plane to Bismarck to testify for HB 1430, he said.

“I think medical marijuana has been understudied” for its efficacy, Morgan said. “I think it’s time to explore the options and let pharmaceutical companies see what they can come up with. It’s time.”

Other sponsors of HB 1430 are Andrew Maragos, R-Minot; Marvin Nelson, D-Rolla; Mary Schneider, D-Fargo; and Marie Strinden, D-Grand Forks.

Lower pot penalties?

Another House bill aims to lower penalties for college students caught with small amounts of marijuana on campus.

HB 1394, sponsored by Reps. Lois Delmore, D-Grand Forks, Thomas Beadle, R-Fargo, Kim Koppelman, R-West Fargo, and Hawken, would make the possession of one-half ounce to a full ounce of marijuana a Class B misdemeanor, down from its current designation as a Class B felony.

Possession of less than a half-ounce of marijuana would be charged as an infraction, rather than as a Class B misdemeanor.

If someone is found guilty of possession of an ounce or less of marijuana, the bill also calls for the conviction to be sealed by the court after two years if there are no further drug possession convictions.

Delmore said the bill is designed to make sure that the mistake of smoking pot in a dorm or elsewhere on campus isn’t one that haunts a student the rest of their lives.

“If you have something like that on your record, you have a hard time getting a job” or housing, she said.

http://www.inforum.com/news/3661275-backers-fire-attempt-get-medical-marijuana-legalized-nd

Can Turmeric Curcuma Help With Neuropathy

Today's post from healthclover.com (see link below) looks at Turmeric as an alternative way of helping with symptoms of neuropathy. There are other posts about Turmeric on the blog (see list to the right) and it seems to be an 'up and coming' herbal treatment for various other ailments to, thanks to its anti-inflammatory properties. Certainly scientists are now looking at it more seriously due to widespread positive results. As with all these things, what works for some may not work for you but Turmeric won't interfere with other medications and seems to be worth a try. It's also cheap and easy to take in capsule form.

Turmeric: Herbal Treatment for Peripheral Neuropathy

July 10, 2012

Turmeric is an alternative treatment for the symptoms of peripheral neuropathy that not many people are aware of. It is more commonly used by sufferers of fibromyalgia to alleviate their symptoms, and also as an herbal relief for arthritis.Turmeric is a spice closely related to the ginger family which has a strong yellowish color and pigmentation. It is commonly used in Indian and Thai food and is believed to have special medicinal properties in Indian lore.
The medicinal benefits of turmeric are largely derived from its innate anti-inflammatory properties. Many people find that ingesting it on a daily basis is a helpful and natural way to reduce symptoms of inflammation and banalities maladies that are associated with it.

Turmeric should be considered an alternative therapy for neuropathy rather than a front-line treatment

You will probably not find many Western medical doctors recommending the use of turmeric as a front-line treatment for peripheral neuropathy or any other disease. It should be considered an alternative therapy that may be used to supplement more recognized methods of treatment.
There are many people who suffer from the severe pain of neuropathy who do not respond well to the primary front-line methods of treatment. In their search for relief, these people often turn to alternative methods such as the use of turmeric.

Although there is not currently much scientific research to buoy its standing as an effective anti-inflammatory, there is much anecdotal evidence that it is beneficial to a great many people. A quick search on the Internet will reveal numerous reports of people who find the herb helpful and who take it regularly to help alleviate their symptoms.
We recommend that in your search to alleviate your neuropathy symptoms, you first try the front-line treatments of neuropathy creams, neuropathy support formula vitamins, and prescription medications that can be provided by your doctor.

If you’re pain is persistent, however or does not respond sufficiently to these approaches, it may be beneficial to expand your medicinal arsenal to include turmeric.

Recommended dosages of turmeric for peripheral neuropathy symptoms?

Turmeric may be ingested in either its natural form or in a capsule form. It may be purchased as a powder in the spice section of your store and used as an ingredient in your favorite dishes. It can be difficult to achieve the recommended dosage required to see beneficial effects this way, however.
If you do not prefer the taste of turmeric or are averse to spicy foods, you may opt to ingest turmeric capsules instead. The recommended daily dosage is 500 to 700 mg per day, and it is usually easier to achieve this level by taking a capsule rather than eating turmeric in its natural form.
In addition, many people report that they get much better results by using a high-quality supplement and find that the lower-priced and lower quality capsules are not nearly as beneficial. You will have to experiment to find what exactly works the best for you.

http://healthclover.com/turmeric-peripheral-neuropathy/

Vitamins B12 And D3 For People Living With Neuropathy And HIV

Today's post from nybc.wordpress.com (see link below) looks at Vitamins B12 and D3; two of the key vitamins people should ensure remain at healthy levels, when living with the side effects of HIV including neuropathy. Of course, the New York Buyers Club is a very well known supplier of supplements and vitamins and this blog makes a point of not advertising for commercial sites but this article does give some very good medical information based on the findings of the Canadian, Catie HIV organisation and reliably informs you of the reason why you might need supplementation - after that the decision is yours as to where you buy what you need. Personally, I would always check with your doctor first - a simple blood test will tell you if you're deficient in any vitamin or mineral areas and it's possible you can get any supplements free on prescription after that - if not, perfectly good supplements can be bought cheaply almost everywhere these days. There are also various other articles about B and D vitamins to be found in the list to the right of this blog and they may help further with your decision making.

Why Vitamins B12 and D3 Are Especially Important to People with HIV 
Posted by jarebe December 8, 2013 New York Buyers’ Club – The Blog
A nonprofit source for dietary supplements
 
Our friends at the Canadian AIDS Treatment Information Exchange (CATIE), a Canadian government-supported education and prevention organization, recently published an excellent guide to managing HIV medication side effects. This online guide covers the territory from body shape changes, to gastrointestinal disorders, to neurological effects, to emotional wellness, to fatigue, to sexual difficulties.

The Appendix to this guide focuses on two vitamins, both of which have been highlighted as especially important for people with HIV: B12 and D3. Deficiency of these two vitamins appears to be common among people with HIV, and supplementing to correct the deficiency can bring about major improvements in health. So it’s definitely worthwhile to check your B12 and D3 status, and, if you’re deficient, find a good supplementation strategy. Note that NYBC stocks both of these inexpensive vitamins: the methylcobalamin form of Vitamin B12 recommended below; and several strengths of Vitamin D3, including the commonly recommended D3 – 2500IU format.

Below are the CATIE recommendations:

Vitamin B12

A number of studies have shown that vitamin B12 is deficient in a large percentage of people with HIV, and the deficiency can begin early in the disease. Vitamin B12 deficiency can result in neurologic symptoms — for example, numbness, tingling and loss of dexterity — and the deterioration of mental function, which causes symptoms such as foggy thinking, memory loss, confusion, disorientation, depression, irrational anger and paranoia. Deficiency can also cause anemia. (See the section on Fatigue for more discussion of anemia.) It has also been linked to lower production of the hormone melatonin, which can affect the wake-sleep cycle.

If you have developed any of the emotional or mental symptoms mentioned above, especially combined with chronic fatigue, vitamin B12 deficiency could be contributing. This is especially true if you also have other symptoms that this deficiency can cause, including neuropathy, weakness and difficulty with balance or walking. On the other hand, these symptoms can also be associated with HIV itself, with hypothyroidism or advanced cases of syphilis called neurosyphilis. A thorough workup for all potential diagnoses is key to determining the cause.

Research at Yale University has shown that the standard blood test for vitamin B12 deficiency is not always reliable. Some people who appear to have “normal” blood levels are actually deficient, and could potentially benefit from supplementation.

The dose of vitamin B12 required varies from individual to individual and working with a doctor or naturopathic doctor to determine the correct dose is recommended. Vitamin B12 can be taken orally, by nasal gel or by injection. The best way to take it depends on the underlying cause of the deficiency, so it’s important to be properly assessed before starting supplements. For oral therapy, a typical recommendation is 1,000 to 2,000 mcg daily.

One way to know if supplementation can help you is to do a trial run of vitamin B12 supplementation for at least six to eight weeks. If you are using pills or sublingual lozenges, the most useful form of vitamin B12 is methylcobalamin. Talk to your doctor before starting any new supplement to make sure it is safe for you.

Some people will see improvements after a few days of taking vitamin B12 and may do well taking it in a tablet or lozenge that goes under the tongue. Others will need several months to see results and may need nasal gel or injections for the best improvements. For many people, supplementation has been a very important part of an approach to resolving mental and emotional problems.

Vitamin D

Some studies show that vitamin D deficiency, and often quite severe deficiency, is a common problem in people with HIV. Vitamin D is intimately linked with calcium levels, and deficiency has been linked to a number of health problems, including bone problems, depression, sleep problems, peripheral neuropathy, joint and muscle pain and muscle weakness. It is worth noting that in many of these cases there is a link between vitamin D and the health condition, but it is not certain that a lack of vitamin D causes the health problem.

A blood test can determine whether or not you are deficient in vitamin D. If you are taking vitamin D, the test will show whether you are taking a proper dose for health, while avoiding any risk of taking an amount that could be toxic (although research has shown that toxicity is highly unlikely, even in doses up to 10,000 IU daily when done under medical supervision). The cost of the test may not be covered by all provincial or territorial healthcare plans or may be covered only in certain situations. Check with your doctor for availability in your region.

The best test for vitamin D is the 25-hydroxyvitamin D blood test. There is some debate about the best levels of vitamin D, but most experts believe that the minimum value for health is between 50 and 75 nmol/l. Many people use supplements to boost their levels to more than 100 nmol/l.

While sunlight and fortified foods are two possible sources of vitamin D, the surest way to get adequate levels of this vitamin is by taking a supplement. The best dose to take depends on the person. A daily dose of 1,000 to 2,000 IU is common, but your doctor may recommend a lower or higher dose for you, depending on the level of vitamin D in your blood and any health conditions you might have. People should not take more than 4,000 IU per day without letting their doctor know. Look for the D3 form of the vitamin rather than the D2 form. Vitamin D3 is the active form of the vitamin and there is some evidence that people with HIV have difficulty converting vitamin D2 to vitamin D3. Historically, vitamin D3 supplements are less commonly associated with reports of toxicity than the D2 form.

It is best to do a baseline test so you know your initial level of vitamin D. Then, have regular follow-up tests to see if supplementation has gotten you to an optimal level and that you are not taking too much. Regular testing is the only way to be sure you attain — and then maintain — the optimal level for health.

With proper supplementation, problems caused by vitamin D deficiency can usually be efficiently reversed.

http://nybc.wordpress.com/2013/12/08/why-vitamins-b12-and-d3-are-especially-important-to-people-with-hiv/

Can Cognitive Behavioural Therapy Help With Neuropathic Pain

Today's post from kcl.ac.uk (see link below) talks about a new research study into the psychological and physical effects of HIV-related neuropathy. It aims to encourage psychological treatments via the internet, for people who aren't responding very well to the standard treatments. It's based on the premise that new cognitive behavioural therapy may help people to respond better to the pain. It began in January of this year but is still taking on people who are interested in joining the study. It's a laudable mission and who knows; if these methods work, they could also work for other people with chronic pain issues from neuropathy - there's no reason why this group should be exclusive. Further details below.

The OPEN Study
King's College London 2016
 
Online Psychological Treatment for People with Painful HIV-related Peripheral Neuropathy (The OPEN Study)

The OPEN study aims to understand how people with HIV and pain in their feet cope with this pain, and to develop and test a new psychological treatment approach to manage the impact of this pain on people’s lives.
Why are we doing this study?
Many people with HIV experience pain in their feet due to peripheral neuropathy, which may be related to HIV or its treatments. This pain is often not relieved by medical treatments.
Psychological treatments, such as cognitive behavioural therapy (CBT), have been shown to help improve functioning and quality of life in people with chronic pain. However, little is known about whether CBT is helpful for people with HIV and peripheral neuropathy.
It can be difficult to access CBT for managing pain, so we are working to develop a version of CBT delivered over the internet to increase the availability of this treatment for people with HIV and peripheral neuropathy.
What are we doing?

Part 1
Starting January 2016: We are undertaking a systematic review of the evidence about psychological factors (e.g., depression, anxiety, thinking patterns, coping behaviours, social support, etc) associated with chronic pain in people living with HIV. This review will help us identify factors that are important to consider within CBT for people with HIV and peripheral neuropathy.

See a summary of the protocol for this review at the PROSPERO website,

Part 2 - Now recruiting participants
From November 2016 to June 2017 we will conduct interviews with approximately 30 people living with HIV and peripheral neuropathy.
The interviews will ask people how they cope with pain, and their thoughts on a version of CBT delivered over the internet.
If you would like to participate in this study please see the recruitment advertisement and participant information sheet for more details.

Part 3 
We will develop the new online CBT for people with HIV and peripheral neuropathy based on data gathered from the systematic review and interview study.
We will ask people living with HIV and peripheral neuropathy to provide feedback on the new treatment once developed.
From May 2018 – August 2019 we will conduct a small randomized controlled trial comparing the new online CBT to a control group to see how satisfied people are with this treatment and whether it is feasible to do a larger study. Approximately 70 participants with HIV and peripheral neuropathy will be recruited for this study.

Funding Ethics Study team Contact us


Please contact Dr Whitney Scott if you would like to know more about the OPEN Study:

Whitney Scott, PhD

NIHR Postdoctoral Fellow

Health Psychology Section

Institute of Psychiatry, Psychology, and Neuroscience

King's College London

5th Floor Bermondsey Wing, Guy's Campus

London SE1 9RT

Email: whitney.scott@kcl.ac.uk

Tel: 020 7188 5421

http://www.kcl.ac.uk/ioppn/depts/psychology/research/ResearchGroupings/healthpsych/research-group/The-OPEN-study.aspx