Donate to RSDSA – a single gift can help so many & support better treatments


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I alone cannot change the world, but I can cast a stone across the waters to create many ripples.
– Mother Teresa
Donations are like a stone in the water, a single gift can ripple through the community to help many people. Every donation to us is terrific and we want you to know that each is important and meaningful.
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The holiday season is a special time of the year for being part of a community, sharing, receiving and giving. We ask you to make a gift to our End of the Year appeal to ease the lives of people with CRPS.
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We can’t make the pain go away, but with a donation from you we can work together to give those with CRPS support, education, and hope while driving research to develop better treatments and a cure.
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Consider the impact your donation will make in 2020 on the lives of those with CRPS. We can work together and share the goal of bringing light and hope to people living with CRPS.
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Thank You!

The RSDSA Staff – Pam Kientzler, Jim Broatch, Jennifer Pincus & Tracy Greer

Courageous Kids Camp Open for Applications!

Courageous Kids Camp instills inspiration and empowerment in children!
Registration for the 2020 camp and retreat sessions is now open. Apply today.

Bad Flare Day Shirts Are Now Available!

These “Bad Flare Day” shirts were a hit at the 4th Annual RSDSA Long Island CRPS Awareness Walk & Expo in September!
Head over the RSDSA Shop to purchase your shirt today just in time for the holidays!

Thank you to our title sponsors!
Our title sponsors make RSDSA events and awareness activities possible. Please join us in thanking and supporting them!
The Michael and Elizabeth Axelrod Family Foundation

RSDSA
99 Cherry St. • P.O. Box 502 • Milford, CT 06460
Tel: 203.877.3790 • Toll Free: 877.662.7737

Our Mission
Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) mission is to provide support, education, and hope to all affected by the pain and disability of CRPS/RSD, while we drive research to develop better treatments and a cure.

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The material on this site is for informational purposes only.

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It is not legal for me to provide medical advice without an examination.

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It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

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For My Home Page, click here:  

Welcome to my Weblog on Pain Management!

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PLEASE GIVE TO RSDSA – donor will match donations up to $5,000!


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Neuropathic Pain is

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highly difficult to treat 

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and few medications are available

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Please donate to RSDSA to support research for neuropathic pain & help those disabled by pain.

 

 

From RSDSA:

 

It’s almost go time!

 

We are only days away from #GivingTuesday 2019! This year, we have a donor who will match our donations up to $5,000! It’s true that it takes a village like our community to work together and raise awareness, educate, and advocate for better treatments.

 

If you haven’t done so already, please make a donation to our #GivingTuesday fundraising page and tell your friends and family about our campaign. Spreading the word gets our voices heard and the donations rolling in! We’re excited to be a part of this worldwide event and providing a chance to give back to our community.

 

Please join our campaign between now

 and Tuesday, December 3, 2019

 

RSDSA’s 2019 Accomplishments

 

  • Co-sponsorship of Courageous Kids Camp for children with CRPS in Kentucky for the 4th year

  • Sponsorship of Young Adults Weekends for young adults with CRPS who are transitioning into the workforce, independent living, and other new situations

  • Sponsorship of an accredited free online course on pediatric CRPS

  • Sponsorship of two Treating the Whole Person conferences; in Houston and Denver

  • And much more!

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Cheers,

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Your Team at RSDSA

 

 

 

 

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We are highlighting a different Warrior’s story on our blog each day!

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Catch up on the posts today!

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The material on this site is for informational purposes only.

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It is not legal for me to provide medical advice without an examination.

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It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

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Comments are welcome.

This site is not for email, not for medical questions, and not for appointments.

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For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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Please IGNORE THE ADS BELOW. They are not from me.

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Simply Calming


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First, an introduction or just skip below to web link, below, of the sweet Suzuki Roshi breathing practice of exhalation. It is so simple people with Alzheimer’s can do it. So instantly calming.

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It is best to practice while we are young and build a solid practice, make it part of being with your Self. The Divine Self. It is so simple and so sweet. It is who we are.

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A wonderful practice and highest teaching. We are all the divine essence, the serene soul. Enjoy how simple and calming…..relax and be in the moment of which the highest teachings speak, as far back as the Vedas and Upanishads, Buddha and all spiritual traditions have taught. 

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There is no god but God. There are no other gods. Not dreamy woo woo stuff. It just Is. Omnipresent. 

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“This is no world. It is God Himself. In delusion we call it world.” Vivekananda (6:371) “Complete self-surrender is the only way to spiritual illumination. Vivekananda (5:258)

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Acceptance. Enjoy who you already are. 

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Just be. You are That. We forget our true self. This is real. No kids play. 

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We all experience these moments. Being. Just being. Simple as breathing. 

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“ There is no question that breathing is taking place. Can you see that there is no breather to be found anywhere? The body is empty, the breath is empty and you are empty.” 

 

The Upanishads describe that stage as turiya pure consciousness. Turiya is the background that underlies and transcends the three common states of consciousness.

Buddhists call this emptiness. Advaita calls it fullness. The Divine Essence. God. The self that merges into the Absolute beyond, time space and causation Beyond name and form there is nothing else but the Self, Existence-Consciousness-Bliss. And this pure simple breathing out brings it into this very moment.

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from the dharma message of Zen priest and teacher White Lotus Judith Ragir.

click above name to go directly to the website for this  dharma teaching – it will be easier to read. 

 

Exhaling and dissolving.

Here are some quotes from Suzuki Roshi in “Not Always So” (chapter: Calmness of Mind) that emphasize working with the exhale while meditating:

Calmness of mind is beyond the end of your exhalation. If you exhale smoothly, without even trying to exhale, you are entering into the complete perfect calmness of your mind. You do not exist anymore. 

Inhaling without effort you naturally come back to yourself with some color or form. Exhaling, you gradually fade into emptiness – empty, white paper. That is shikantaza. The important point is your exhalation. Instead of trying to feel yourself as you inhale, fade into emptiness as you exhale. 

To take care of the exhalation is very important. To die is more important than trying to be alive. When we always try to be alive, we have trouble. Rather than trying to be alive or active, if we can be calm and die or fade away into emptiness, then naturally we will be all right. Buddha will take care of us. Because we have lost our mother’s bosom, we do not feel like her child anymore. Yet fading away into emptiness can feel like being at our mother’s bosom, and we will feel as though she will take care of us. Moment after moment, do not lose this practice of shikantaza.” 

This is very impressive quote to me. It is in alignment with the fourth Tetrad of the Anapanasati Sutra. The Anapanasati Sutra is composed of sixteen contemplations, which divide rather neatly into four sets of four: The body group, the feelings group, the mind group, and the wisdom group. They are in a “somewhat” developmental order in that mindfulness of the physical movements of the breath is the first emphasis in any concentration practice. The feelings group is ***becoming sensitive to rapture and joy in meditation***and then calming or letting go of rapture. The third group is the mind group – becoming aware of the mind, gladdening the mind, steadying the mind, and liberating the mind. (See “Breath by Breath” by Larry Rosenberg. This is a book Clouds in Water studied several years ago).

The fourth group the wisdom group is very similar to Suzuki Roshi’s quote above.

From a Thich Nhat Hanh translation:

13. I am breathing in and observing the impermanent nature of all dharmas. I am breathing out and observing the impermanent nature of all dharmas. He practices like this.

14. I am breathing in and observing the fading of all dharmas. I am breathing out and observing the fading of all dharmas. She practices like this.

15. I am breathing in and observing liberation (cessation). I am breathing out and observing liberation (cessation). He practices like this.

16. I am breathing in and observing letting go (relinquishment). I am breathing out and observing letting go (relinquishment). She practices like this.

This sutra demonstrates how the breath can take you all the way to the deepest realizations. The breath often is used as the first object of concentration. But it also can practiced as a complete teaching which leads to insight.

In Larry Rosenberg’s book, he writes about Buddhadasa’s approach to breath practice and its use for going all the way to realization. He writes:

“ When we got to the thirteenth contemplation – which concerns impermanence, this is where real vipassana begins – he said that Anapanasati was one of the simplest and most effective means for realizing emptiness.” 

Buddhadasa said: “There is no question that breathing is taking place. Can you see that there is no breather to be found anywhere? The body is empty, the breath is empty and you are empty.” 

Perhaps this is where Zen and Vipassana meet. Where the Mahayana and the Theravada come to the same conclusion.

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.http://www.judithragir.org/2014/01/exhaling-and-dissolving/

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.Adds are not mine. 

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Oxytocin for Pain, Treatment Resistant Depression and Bipolar Disorder


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Recent publications on Oxytocin are listed below. It is a very effective hormone made by the brain. It is NOT the opioid oxycodone and NOT oxycontin.

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Use search function top left above photo to see previous postings on oxytocin since 2013. It can be extremely important in the treatment of intractable pain, treatment resistant depression, bipolar disorder or anxiety.

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Once you titrate to the proper dose for each person —from 10 to 100 u’s, relief is quite astonishing, with rapid onset in a few minutes when given under the tongue – only after reaching that person’s dose, simple, without side effects. May use as needed 3 or 4 times per day. There is no withdrawal.

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Avoid use if polycystic ovary syndrome (PCOS). 

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Oxytocin must be made by a compounding pharmacy. Healthcare insurance refuses to reimburse for any compounded medications though they are far less expensive even than gabapentin that fails to help so many with pain, and oxytocin is far more effective. 

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Every time you hug someone, you are giving each other oxytocin. When your dog and you stare at each other, oxytocin is being stimulated. Having discussed that with one of my patients, he came back one month later to say he and his wife had fallen in love again after almost 50 years of marriage because they’ve been hugging every day: hugs stimulate oxytocin. 

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Behavioral effects of oxytocin are highly context- and person-dependent. You are not going to fall in love with someone you do not like. 

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Rash, JA, et al: Oxytocin & Pain, A Systematic Review & Synthesis of Findings. Clin J Pain 30(5):453-462, May 2014.

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Xin Q et al: The Analgesic Effects of Oxytocin in the Peripheral and Central Nervous System. Neurochemistry Intl 103:57-64, 2017.

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Paloyelis Y et al: The Analgesic Effect of Oxytocin in Humans: A double-blind, placebo-controlled, cross-over study using laser-evoked potentials. 

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MacDonald K, Feifel D. Oxytocin’s role in anxiety: a critical appraisal. Brain Res 2014; 1580: 22–56.

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Churchland PPS, Winkielman P. Modulating social behavior with oxytocin: how does it work? What does it mean? Horm Behav 2012; 61: 392–399.

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Bethlehem, R A I  et al: Intranasal oxytocin enhances intrinsic corticostriatal functional connectivity in women, Translational Psychiatry, 2017, 7, 4, e1099 ********excellent********

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The material on this site is for informational purposes only.

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It is not legal for me to provide medical advice without an examination.

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It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

~~

Comments are welcome.

This site is not for email, not for medical questions, and not for appointments.

~~~~~

For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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Please IGNORE THE ADS BELOW. They are not from me.

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If there be pain let it be


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If there be pain let it be.

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It is also part of the Self.

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The Self is poorna (perfect).

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Sri Ramana Maharshi, the great enlightened spiritual giant who at age 16 experienced the highest thereafter until almost 100 years of age. May we be blessed to awaken with these high teachings.

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Pain? Really?

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Imagine you are sitting on the banks of the Holy Ganges.

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Is pain and suffering the most amazing way to kick one into instant and serious spiritual study? Buddha must be right. We must use it, no matter what we do, as it leads to freedom of suffering. Ancient teachings give the method. So again, relax, deep breath.

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Imagine you are sitting on the banks of the Holy Ganges.

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The most holy, most revered, most powerful Mother of the Universe revered by sages for more than 6,000 years, the Mother of the Universe is flowing in front of you. Imagine. Breathe. In the Holy Presence, the body mind is not you. There is no time, space, and causation to clearly perceive you, the one Self, pure consciousness. You always were, as you are right now. Consciousness itself, clouded by misperceptions, obstructions that prevent us seeing the awakened being we are.

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Ramana Maharshi taught the simplest, most direct method. No need for religion, or you may choose the path of religion, but all paths lead to the Absolute. All rivers lead to the ocean.

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If there be pain let it be.

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It is also part of the Self.

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The Self is poorna (perfect).

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We are not the body, not the mind.

We are the Self. The Infinite.

Always have been.

 

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The material on this site is for informational purposes only.

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It is not legal for me to provide medical advice without an examination.

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It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

~~

Comments are welcome.

This site is not for email, not for medical questions, and not for appointments.

~~~~~

For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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Please IGNORE THE ADS BELOW. They are not from me.

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Posted in Pain, Uncategorized. Tags: . 2 Comments »

Naltrexone in Low Dose Reduces Pain & Depression


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We’ve known LDN helps pain since the turn of the century. Stanford could really shake the research world if they trialed LDN for Major Depressive Disorder, not the depression that improves with less pain, or in Multiple Sclerosis clinics or the Parkinson’s or Inflammatory Bowel Disease clinics. Is it too much to ask for better quality clinical research, not just results of patients responding by click or touch on a computer touch pad?

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The astonishing promise of low dose naltrexone (LDN) research remains in its infancy since 1984, 33 years ago, when it was discovered to offer profound clinical relief for multiple sclerosis and other serious conditions. I have prescribed naltrexone in ultra low and low dose since 2003, and discussed its central anti-inflammatory glial modulating mechanisms in 2009:

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Low dose naltrexone, or LDN, has been prescribed “off label” for persons with many conditions including intractable pain, chronic fatigue syndrome, complex regional pain syndrome, RSD, Multiple Sclerosis, Parkinsons Disease, IBS, inflammatory bowel disease, autoimmune diseases and Crohn’s Disease to mention only a few. Low dose naltrexone is not a cure but may be potentially helpful for selected persons with these conditions. It appears to have little or no toxicity at this low dose – a few persons report transient insomnia, nausea or vivid dreams.

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The same year in 2009, soon after my post on LDN, Drs. Younger and Mackey of Stanford Pain Center reported a double blind study of low dose naltrexone in persons who had fibromyalgia more than 10 years and showed 30% improvement in pain and fatigue.

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In 2016, five Stanford authors including Dr. Mackey published a poster presentation. At least the 2009 study was double blind; not this one. It was open label.

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A novel glial cell inhibitor, low dose naltrexone, reduces pain and depression, and improves function in chronic pain: A CHOIR study

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Poster presented at: Annual Meeting of the American Pain Society; May 11-14, 2016; Austin, TX. Poster 418.

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Authors: K. Noon,  J. Sturgeon, M. Kao, B. Darnall, S. Mackey

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Stanford University Department of Anesthesiology, Perioperative, and Pain Medicine, Stanford, CA

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Funding received from NIH and the Redlich Pain Endowment

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NIH funding should lead us forward, not back to a single open label study. One would hope Stanford would do the larger study they recommended 7 years ago. This adds to the CV of five researchers, but

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  • does it help millions with chronic intractable pain?

  • does it add to the growing body of clinical LDN experience worldwide?

  • when will the mechanism and uses of LDN, the TLR4 receptor and the powerful innate immune system be taught by healthcare providers in academia, in practice, and in pharmacies, not just in basic science?

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The poster highlights the Stanford CHOIR Information Registry (discussed below), but provides almost nothing new despite the computing power of CHOIR that likely cost small fortunes. Patients are asked to enter clinic data into a convenient handheld click- or touch-based input device. What could be easier? We look forward to better studies from Stanford’s CHOIR devices and we long for the days when doctors publish better data that addresses the disabling pain, depression and needs of millions of our patients with chronic intractable pain.

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Stanford’s CHOIR Information System

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“We modified and implemented an existing, web-based system that administers computer-adaptive PRO questionnaires, called the Collaborative Health Outcomes Information Registry (CHOIR).  Next, we developed a messaging interface to send PRO results from CHOIR to the UF Health Epic EHR.

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The CHOIR system was developed at Stanford University by a team of informaticists and physicians who provided a no-cost license for our implementation. CHOIR utilizes a client-server architecture with web-based clinician and patient interfaces that use open source technologies, including jQuery mobile and Google Web Toolkit. Users can access CHOIR via web browsers on desktop or mobile devices. The primary patient user function is the completion of computer-adaptive PRO assessments using a click- or touch-based input device ( Figure 1 ).  Clinical user functions include registering patients to complete a PRO assessment, reviewing individual and summary PRO assessment results, longitudinal outcomes tracking, and clinical decision support through the aggregation of PRO result sets.”

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.The material on this site is for informational purposes only.

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It is not legal for me to provide medical advice without an examination.

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It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

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This site is not for email and not for appointments.

If you wish an appointment, please telephone the office to schedule.

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For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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Please IGNORE THE ADS BELOW. They are not from me.

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Medications denied for pain today – Celebrex, Skelaxin, Morphine, Oxycodone, Methadone, Suboxone


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Happy New Year. Medications are denied for pain one month after you sign onto new insurance based on medications they cover:

 

Celebrex, a generic NSAID, less risk of GI bleed which is an increased in seniors day by day as we age.

 

Skelaxone, generic muscle relaxant

 

Lorzone, muscle relaxant

 

Morphine 30 mg ER, generic, denied 3 per day, well within CDC guidelines

 

Methadone 10 mg 3/day, well within CDC guidelines

 

Oxycodone 5 mg 3/day, well within CDC guidelines

 

Suboxone generic,  FDA approved for addiction in US but not for pain; approved for pain and for addiction in EU.

 

Does insurance cover cost of medication?

 

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