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Share Your Story; Jan Marie Moore

After 15 years of suffering (docs cut a nerve in my c-spine during neck surgery), I have been diagnosed with CRPS. My spine is on fire 247. My body has atrophied terribly. I can barely walk or use my arms. Doc put me on Nucynta and a muscle relaxer. Its only helping a little. I’m 65 now, and frightened of the future. My head goes to dark places in the night. I saw 10 different doctors before this. All of whom called me “drug seeking” out of ignorance. The psychological damage they did to me is permanent, but for the sake of my family, I must press forward and try everything I can. I hope for all of our sake the medical community gets more savvy very soon! by JanMarieMoore…

 

Respond to CDC proposed guidelines

Here is your chance to voice your opinion on how the PROPOSED CDC Guidelines may affect you as a pain patient who needs proper and timely access to care. (this link is the place to submit your comments), there is also a link on the CDC page that brings you to the guidelines, as well it might be a good idea to write your statement in a word document so that you dont lose it, as well as share it here on our page in the comment section on this post. ‪#‎ShareYourStory‬‪#‎RaiseYourVoice‬ ‪#‎MakeADifference‬

Dont forget to send your letter to the CDC… http://www.regulations.gov/#!submitComment;D=CDC-2015-0112-0001 #AccessToProperCare #MakeADifference #ShareYourStory

 

Here is POP President Barby Ingle’s submission:
National Center for Injury Prevention and Control
Centers for Disease Control and Prevention
4770 Buford Highway N.E., Mailstop F-63,
Atlanta, GA, 30341…

 

What is Central Pain Syndrome?

“What is Central Pain Syndrome?”
Central Pain Syndrome is a lifelong neurological disease of the Central Nervous System, which causes constant, unending, agonizing pain signals of all somatic types simultaneously. It is caused by lesions on the somatic pathways in the brain, brainstem, and/or spinal cord, which can be the result of disease or injury. There is presently no cure, and any treatments are few and of limited efficacy.

The current definition of Central Pain Syndrome given in the Introduction to the textbook “Central Pain Syndrome: Pathophysiology, diagnosis and management,” by Canavero and Bonicalzi (2 nd Edition, 2013) is: Spontaneous and/or evoked, anomalous, painful or non-painful, sensations projected in a body area congruent with a clearly imaged lesion impairing – transitorily or permanently – the function of the spinothalamoparietal thermoalgesic pathway.

Central Pain Syndrome as defined above has an estimated …

 

Share Your Story: Emily Ullrich

In hindsight, my chronic pain began at around eleven years old, when I started menstruating. My periods were so extremely painful that I would literally pass out from the pain. My mother had painful periods, and so my agony was chalked up to genes, and as I got older, I learned a few tricks to help the pain. As a teenager, I had regular pelvic pain and urinary tract infections, and by the time I was in college, I started seeking answers for my pain. I met endless doctors who shrugged me off with comments like, “You’re too young to have serious pain, I think you should just take Ibuprofen and use a heating pad,” and “It’s normal for women to have pain during their periods.” I continued to seek help over the next two decades, and finally, in my …

 

The Pain Experience: Meeting the Needs of Pain Patients by Stephanie Lynn Christianson

The Pain Experience: Meeting the Needs of Pain Patients
by Stephanie Lynn Christianson

Executive Summary
Pain is difficult to define with certainty. Healthcare professionals are confronted with a high degree of complexity which affect the standards of care. The International Association for the Study of Pain (IASP) defines pain as, “An unpleasant sensory and emotional experience associated with actual or potential tissue damage.” The experience of pain encompasses many factors which are frequently addressed only in part or neglected. The patient’s experience includes extensive emotional and psychological aspects which arise from sensory trauma in the body. The needs of a pain patient require more than treating the physiological symptoms. In order to fully address the comprehensive needs of the patient, emotional and psychological factors must be considered. To improve the quality of life of those living in pain, all contributory …

 

Raising Awareness, Building Community by Stephanie Christianson

Raising Awareness, Building Community
Stephanie Christianson

The Juvenile Diabetes Research Foundation (JDRF) hosted a series of two 5k challenges here in Atlanta, Georgia. My family and I participated in last year’s 5K held on the 19th at Verizon Amphitheater in Alpharetta, GA, my hometown. We participated in this event because of my younger brothers who are both Type I Diabetics (T1D). My family does not have a family history of this particular disease; moreover, they were diagnosed in an atypical pattern. My youngest brother was the first to be diagnosed at the ripe age of 13, approximately three years later my other brother was diagnosed. It is also important to note I was 18 months into my diagnosis of Chronic Regional Pain Syndrome in my left leg.

While my brothers and I deal with two different chronic illnesses, there is …

 

Michigan Pain Survivor—Learning a New “Normal” By Karen Shay

Michigan Pain Survivor—Learning a New “Normal”
By Karen Shay

Editor’s Note: Karen Shay spent 23 years practicing in Occupational Therapy as a treating therapist with patients with multiple types of disorders and diagnoses, as well as a manager. After two cervical spine surgeries and one lumbar surgery, resulting in nerve damage adding to the already debilitating chronic pain, the Grand Rapids, Michigan woman hasn’t worked in her much loved career for five years. In a conversation with the National Pain Report, it became obvious that she has a heart for helping others living with chronic pain and we offered her an opportunity to speak out which, we are happy to report, she has accepted.

Here’s her story:
I spent nearly a quarter of a century helping people recover and be as independent as possible with whatever their physical and mental …

 

BE THE GIFT OF HOPE – BE A HERO
By Barby Ingle

In January my last living grandparent passed away. Now, my father has failing kidneys and is on dialysis. For the past two years he has been in desperate need of a kidney transplant. A little over a month ago, I lost my mother to COPD. What a whirlwind this all has been. In this time of sorrow and loss a miracle happened that I want to share with you all; make that 6 miracles in one.

One of our Executive Board members, Tenah Callison lost her son on the same day my mother passed. As a matter of fact, when Tenah called to tell me that her son Dalton was a registered organ donor and that they decided if my dad was a match that he would get the lifesaving kidney was the exact time my mother passed. Tenah and I were both praying and holding each other up even though we were thousands of miles apart. It turns out Dalton was a match to my dad. It was all so surreal. I can’t even put into words that amazing things that had to fall into place for this to happen.

The next morning my dad headed to the hospital for his final check before the transplant would take place. During that exam they found that he had two heart blockages. These blockages were not there in December when he was last tested. He was rushed into emergency surgery and was unable to receive the kidney coming from Dalton. My dad is still on dialysis and healing from heart surgery. There is more news coming on this front that I am not ready to share. Over the next few months your prayers are still needed that this process will all work out for my dad and a living donor who has since come forward for him. I pray that in the next few months he heals perfectly and is ready for that life giving chance. Not only for him, but for the selfishness of me, my siblings, and his 6 grandkids. We need our daddy and Grampa, he is the great patriarch of our family.

Back to the miracle of multiple miracles. A while back Dalton had told Tenah that he wanted to be an organ donor. He knew that was one of his purposes here on earth. He had it marked on his driver’s license. The second part of his actions Tenah did not know about until after the accident that lead to his life in our world was complete. Dalton took the needed step of enrolling as a donor on his state donors register. Most people think that just obtaining or renewing a driver’s license that states you are an organ donor is enough. There is an extra step with internet registration that makes the decision so much easier and smoother process for all involved. Dalton knew in his heart that he wanted this, he expressed it to his family, signed up at the DMV and registered on the state site.

Most potential donors are admitted into a hospital because of an accident that involved severe head trauma, brain aneurysm or stroke. With Dalton it was a head injury after the car he was riding in pulled over to the side of the road due to a flat tire and was hit from behind by a passing car. His hospital providers worked hard and long, doing everything possible to save his life. Tenah being a pain patient herself also made sure that they provided him pain care in case he was feeling any pain from the accident. A smart choice while testing him and working to save his life, as good pain care is also important. After they tested him for brain death and exhausted all possible lifesaving efforts with no response from Dalton preparations were made to fulfil his wishes to be a donor. Dalton saved 6 lives that day. 5 with vital organs and my father.

If you are planning to be a donor after you pass, please do what Dalton did. Register as a donor with your state agency (see link at the end of this article). If you are not registered in the data based the providers will seek consent from your next of kin. Make it easy on your survivors and let your wishes be known.

It is so important that if your wishes are to be an organ donor like Dalton was that you know how the system works. Did you know that there are options for living donors as well as donors who have passed?

Do you know that by being a donor you give the gift of hope to families and friends of thousands of individuals waiting to find their match for their life to be enhanced through organ donation? Each day, about 80 people receive organ transplants. However, 21 people die each day waiting for transplants that can’t take place because of the shortage of donated organs. There is a need for living donors and it’s becoming more common to donate organs or partial organs while living. For living donors the type of orangs you can donate include a kidney which is most common, as well as a lobe of a lung, partial liver, pancreas or intestine.

This article is in loving memory of Dalton Bryant Callison – March 25, 1993 – May 2, 2015. I will forever be grateful for Dalton’s gift to my father and the other 5 families that his sacrifice assisted with his life giving miracles.

To register to become a donor in memory of Dalton B. Callison please visit www.donatelife.net

For more information on becoming a living donor, go to www.transplantliving.orgDalton 2 or contact your local transplant center. 2015-06-12 16.34.04

 

NEW Investigational drug being studied in participants with high cholesterol or other risk factors for heart disease

The SPIRE program is looking for people who are taking a cholesterol lowering medication but still have high cholesterol. If you qualify, you might be interested in participating in a research study.

This study evaluates the PCSK9 inhibitor, Bococizumab compared to placebo, in reducing the occurrence of major cardiovascular events, including cardiovascular death, myocardial infarction, stroke, and unstable angina requiring urgent revascularization, in high risk subjects who are receiving background lipid lowering therapy and have cholesterol laboratory values of LDL-C /= 70 mg/dL or non-HDL-C /= 100 mg /dl

The full study details and eligibility criteria are listed here.

Please complete the online questionnaire to check if you’re eligible for the trial.

If you’re not familiar with clinical trials, here are some FAQs:

What are clinical trials?
Clinical trials are research studies to determine whether investigational drugs or treatments …

 

MOVANTIK™ (naloxegol) tablets for the treatment of opioid-induced constipation in adult patients with chronic non-cancer pain launched in the US

MOVANTIK™ (naloxegol) tablets for the treatment of opioid-induced constipation in adult patients with chronic non-cancer pain launched in the US

Tuesday, 31 March 2015

AstraZeneca (NYSE: AZN) announced today that MOVANTIK™ (naloxegol) has launched in the United States. On September 16, 2014, the US Food and Drug Administration (FDA) approved MOVANTIK as the first once-daily oral peripherally-acting mu-opioid receptor antagonist (PAMORA) medication for the treatment of opioid-induced constipation (OIC) in adult patients with chronic, non-cancer pain.

“At AstraZeneca, patients are at the core of what we do every day, and it’s this focus that drives us to bring first-in-class oral medicines like MOVANTIK to the market,” said Dave Fredrickson, Vice President, Specialty Care, AstraZeneca. “We know many patients taking opioids for chronic non-cancer pain often experience OIC, and we believe MOVANTIK is an important treatment option for those unable to …

 
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