Neuropathic Pain

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Panda_1999
Panda_1999 Posts: 191 Member
Topic: Overcoming The Challenges of Living With Chronic Pain
Date: February 20th, 2013, 7:00 - 8:30 p.m. ET
Where: www.facebook.com/NeuropathyAssociation

Dr. Deborah Barrett is a clinical associate professor in the School of Social Work at the University of North Carolina at Chapel Hill and the author of Paintracking: Your Personal Guide to Living Well with Chronic Pain. Dr. Barrett is also a psychotherapist in private practice. She has published self-help articles on chronic pain, as well as scholarly papers on health, illness, and public policy. She also hosts a companion website to her book at www.paintracking.com.

Dr. Barrett’s chronic pain journey began in June 1994, when she was 28-years-old and weeks from completing her PhD in sociology at Stanford University. What she first experienced as sore arms from typing transformed into widespread, debilitating pain. It took her many months to receive appropriate diagnoses and even more time to figure out how to manage the painful symptoms. For Dr. Barrett, writing Paintracking—over a span of fifteen years—was as much about helping herself cope as it was about helping millions of others battling chronic pain. Dr. Barrett shares her healing journey and offers tips to help others to track and minimize pain’s impact on every aspect of daily life. The paintracking approach is all about understanding your own body’s reactions—what helps and what hurts—so that you can make informed choices and improvements.

This Facebook Chat aims to help patients (and their family members and friends) better understand how to:

- cope with chronic pain conditions like neuropathic pain;

- reduce pain and its effects;

- proactively keep pain from becoming suffering;

- deal with chronic pain’s impact on issues like staying active, managing family and social life, pursuing a career, among others;

- treat pain as data, and then experiment with available resources and strategies to gain greater control over one’s experience; and

- improve overall quality of life and care.

Living well with neuropathic pain is affected by the timing of your diagnosis, symptom management, and the regularity of visits with your health care provider(s). Our Facebook Chat event offers a unique opportunity for you to hear from and ask questions of a health care expert in the field as well as of your peers—patients and caregivers—who are battling neuropathic pain. In addition, it stresses the importance of active engagement in one’s own care through deliberate experimentation. Dr. Barrett emphasizes that, “the people who live with pain are the only ones with 24/7 access to data on each moment,” and this knowledge offers power. The key to improvement is figuring out what helps and increasing the length and duration of your best moments.

We look forward to having you join us on February 20th for this Facebook chat. A special thanks to Dr. Barrett for sharing her time and expertise to help our neuropathy community!

Replies

  • Panda_1999
    Panda_1999 Posts: 191 Member
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    I have diabetic peripheral neuropathy, which shows up as numbness, tingling and burning pain in my hands and feet. It affects walking, most types of exercise and many day to day tasks. I'm on meds, but they only help so much. I'm doing all I can to be active, but some days are better than others. Is these anyone else in this group with neuropathy? Diabetes is only one of the causes.
  • swfloridagal
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    Count me in! I have Lupus which attacked the lining on my nerves and caused periphial nueropathy. I also had a shredded sciatic neve from a serious car accident and I have Fibromyalgia and a bulging disk causing numbness and pain. I got a little bit of everything. Lupus is something that cause widespread pain in the joints and muscles and organs and blood and skin and well... you name it.

    Right now I'm battling bruised ribs.... but you knew that. :wink:

    Despite living with all this pain, I managed to drop 47 pounds so far! I feel so much better. I also belong to a group called ChronicPainAnonymous.org and have two daily meditation books. "Living With It Daily" by Patricia Neilson is a very good book to keep your spirits up. The other is called "Stories of Hope" and is on the www.chronicpainaonymous.org website. Its also very good. I also belong to another group that is called "Invisible Disabilties" and "The Chronic Pain-Connection" (both on the web).

    Like the doctor you mentioned, I have been working for 20 years (after a head on collsion) to stay as positve and active as possible while living this way. I've also developed new skills and interests to take the place of the ones that I had to let go due to my pain. It can be done! Eating well is something that also can be done with chronic pain. I'm so grateful for MFP and chronic pain warriors who help to keep me motivated - one day at a time.

    What is the facebook page name? I missed that. Thanks for your post!
  • Panda_1999
    Panda_1999 Posts: 191 Member
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    www.facebook.com/NeuropathyAssociation For this Chat on Feb 20th

    You have to have a facebook account to ask questions, which I don't. But I will attend to to hear what she has to say. I have learned so much from The Neuropathy Association @ www.neuropathy.org They have done a variety of chats, webinars, run support groups, even a free dvd which I found helpful when I was first diagnosed.

    Thanks for the additional links swfloridagal I'll check them out.
  • Panda_1999
    Panda_1999 Posts: 191 Member
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    March 20th: “Dealing With Balance Issues and Neuropathy”
    Facebook Chat with Dr. Bridget Carey!

    Where: www.facebook.com/NeuropathyAssociation

    Numbness, weakness, tingling, and pain are common symptoms of neuropathy. But many people with neuropathy also experience difficulty “sensing” (or feeling) where their feet are and poor coordination when walking because they are not sure about the placement of their feet. They may also find themselves walking differently without really knowing how or why they are doing so. Chances are they have either widened their style of walking or they may find themselves dragging their feet in an unconscious effort to maintain their balance. Problems with balance can also occur when there is a disruption to any of the vestibular (ears), visual (eyes), or proprioceptive (the body's ability to sense movement within joints and joint position) systems—all of which increase the risk for falls and fall-related injuries.

    This Facebook Chat aims to help patients (and their family members and friends) better understand:

    - The link between balance issues and neuropathy;
    - Strategies for dealing with balance issues; and,
    - Approaches for preventing falls and minimizing fall-related injuries.

    Our educational Facebook Chat events offer a unique opportunity for you to hear from and ask questions of a health care expert in the field as well as of your peers—patients and caregivers—who are battling neuropathy. In addition, they emphasize that living well with neuropathy is possible with early diagnosis, symptom management, and regular follow-ups, but it requires active engagement by the patient in his/her own medical care along with the aid of an array of resources—limited as they are—that do currently exist.

    Bridget T. Carey, MD is an assistant professor of Neurology and assistant attending neurologist at New York-Presbyterian/Weill Cornell Medical Center (one of 15 Neuropathy Association-designated Centers of Excellence across the U.S.) and an assistant attending neurologist at the Hospital for Special Surgery. She also serves on The Neuropathy Association’s Neuropathic Pain Management Medical Advisory Council. Dr. Carey specializes in the care of patients with disorders of the spine, peripheral nerves, and neuromuscular system. She has a special interest in the management of back and neck pain, neuropathy, neuropathic pain, gait impairment, headaches, and facial pain. While Dr. Carey focuses on diseases of the peripheral nervous system, she also evaluates and cares for patients with general neurological symptoms and disorders.

    We look forward to having you join us for this Facebook Chat. A special thanks to Dr. Carey for giving her time and expertise to help our neuropathy community!

    Wishing you good health,

    The Neuropathy Association

    P.S. If you do not use Facebook:

    - You can still access the Chat "live" by visiting The Neuropathy Association's Facebook page, but you will not be able to join the conversation by posting comments. View the Association's Facebook page! www.facebook.com/NeuropathyAssociation
  • annepage
    annepage Posts: 585 Member
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    bump.
  • Panda_1999
    Panda_1999 Posts: 191 Member
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    SAVE THE DATE! Feb. 12th for our “Staying Active with Neuropathy” Facebook Chat

    The Neuropathy Association is pleased to announce that we will be hosting a Facebook Chat on February 12th that sheds light on the importance of staying active with neuropathy.

    FACEBOOK CHAT: “Staying Active With Neuropathy”
    WHEN: Wednesday, February 12th, 2014 (7-8:30 pm ET)
    WHERE: www.facebook.com/NeuropathyAssociation
    GUEST HOSTS: Dr. Patricia Kluding (University of Kansas Medical Center); Dr. James Nussbaum (ProHealth & Fitness, PT, OT); Dr. Mamatha Pasnoor (University of Kansas Medical Center); Dr. Douglas Wright (University of Kansas Medical Center)

    For many years, health care providers used to tell people with arthritis to “rest their joints.” But today we know different—we know about the importance of physical and occupational therapy in managing arthritis. Similarly, many of you have been told that you can’t exercise or shouldn’t be exercising with neuropathy. A growing body of research is showing that physical activity can reduce pain and improve function, mobility, mood, and quality of life for people living with neuropathy and neuropathic pain. Physical activity can also help people with neuropathy better manage co-existing chronic conditions they might have such as diabetes, heart disease, and obesity.

    Many people with peripheral neuropathy can benefit from physical and/or occupational therapy to manage symptoms, improve function and enable safe participation in physical activity.

    This Facebook Chat offers participants a unique opportunity to learn about -- and discuss – strategies for staying active, hear from and ask questions of health care experts (Drs. Kluding, Nussbaum, Pasnoor, and Wright), Association staff, and peers, and improve overall quality of life and care. It will focus on:

    - understanding the benefits of physical activity;

    - tips for starting and maintaining a physical activity program;

    - factors determining whether you (and your health care provider) should incorporate physical and/or occupational therapy into your neuropathy care; and

    - understanding the link between neuropathy and the risk for falls.

    We look forward to having you join us on February 12th for this Facebook Chat, which will be held on The Neuropathy Association’s Facebook page. And special thanks to our guest hosts for giving their time and expertise to speak with our community!

    P.S.: If you do not use Facebook:

    - You can still access the Chat "live" by visiting The Neuropathy Association's Facebook page, but you will not be able to join the conversation by posting comments. View the Neuropathy Association's Facebook page!

    www.facebook.com/NeuropathyAssociation
    http://www.neuropathy.org/site/PageServer?pagename=About_Facts
  • xButterflyEffectx
    xButterflyEffectx Posts: 40 Member
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    I have painful peripheral neuropathy. I'm in significant pain on a daily basis. Losing weight is a challenge at the best of times.