“The Daily Pain of Having Extreme Perception”

When I got full body Reflex Sympathy Dystrophy (CRPS), I had developed Centralized Pain. None of the Neurologists, Physical Rehab Specialists or Anesthesiologists I saw were ever able to explain why smells, tastes, sounds and light touch became excruciatingly painful. It was as though my senses became a means for by body to become a self contained Medieval Torture Chamber. I wasn’t able to live independently because I was so debilitated from my RSD that was caused by a post concussive syndrome with persistent whiplash. I had a Traumatic Brain Injury in 1994 and was born with Ehlers Danlos Syndrome but was only recently diagnosed with EDS. So, my neurological issues were fairly complicated and overlapped with early childhood post viral auto immune syndrome along with a connective tissue disorder that became more progressively more painful and degenerative over time.

The progressive neurological and physiological degeneration made my Sensory Processing Disorder increasingly more excruciating over time. Yet, no Dr was ever able to explain why I had developed this complicated problem with sensory input. I coped by calling it my “spidey senses”. I couldn’t even bear the smell of onions or garlic being cooked in a distant part of the house… and one day, the sound of a neighbor’s wind chime caused me such agony that I begged my Mom to find it and make it stop. It was more than 5 houses down the street and yet it sounded like it was in my bedroom. Light touch felt like shards of glass on my skin and people feared touching me. My isolation became more unbearable and I became increasingly filled with despair. Knowing that my suffering was affecting the lives of those around me was harder than living with 24/7 debilitating pain. I lived with a heating pad on high, satiny soft clothes, I wore soft, “Ugg” styled boots year round because everything else was too painful, I had to have sheets made from Bamboo or Eucalyptus and I never went without ear plugs.

The only person who could give me any insight was my Mom, who is a Licensed Marriage and Family Therapist. She had experience with children who had SPD.

Now, after living with this for 15 years, I am in a much better place. Thankfully, Hyperbaric Oxygen has transformed my life and my senses are less painful than before. However, I use a weighted blanket, have soft, satiny sheets made out of wood pulp and I live a very quiet life. I had to let go of friends and family who bring conflict, judgement and drama. It’s been a hard journey but self care has been central to my path to healing. I know that I have chronic diseases but Healing & Wellness are not beyond my reach. It’s because of my health issues that it’s more important than ever before that I do everything I can to support my special needs.

I will be posting more personal stories and videos… along with more information on things that have helped me to not be bed ridden anymore. Although, there are still days and weeks when I am still bed ridden from my pain. However, I try to not beat myself up over it. I find that honoring my body serves my wellness in the long run.

Understanding the complex facets, like Sensory Processing Disorder that comes with Centralized Pain, RSD/CRPS, Arachnoiditis, Chronic Fatigue Syndrome, Autism and other medical diseases and syndromes is crucial to taking care of yourself and your loved ones. The person with SPD is affected as are those in that person’s life.

This article is both illuminating and filled with vital information on SPD. I hope you can read it and share it with anyone who can benefit from it.

“When a gentle glow feels like a spotlight and everyday sounds hurt your ears, life can get anxious and painful. But there may be an upside to being a highly sensitive person.
— Read on www.bbc.com/future/story/20160617-the-daily-pain-of-having-extreme-perception

As Doctors Taper Or End Opioid Prescriptions, Many Patients Driven To Despair, Suicide | Fox News

Doctors and medical establishments are sharply reducing doses of – or altogether no long prescribing — pain medications, leaving many among the estimated 20 million Americans who suffer from daily debilitating chronic pain to consider ending their lives, and many others to kill themselves.
— Read on www.foxnews.com/health/as-opioids-become-taboo-doctors-taper-down-or-abandon-pain-patients-driving-many-to-suicide

CBD is everywhere. But does it work? – Vox

CBD isn’t BS. But CBD products probably are.
— Read on www.vox.com/videos/2018/11/28/18103156/cbd-products-misconceptions

America Has an Opium War. China Hadn’t Noticed

First of all, the issue of addiction in the US is a complicated web of socio-economic and mental health crisis. We have criminalalized pain management and minimized the health consequences of pain patients. The media still blamed medical doctors for overprescribing while blatantly ignoring the sweeping legislative changes that have affected prescriptions, pharmacies and legitimate pain patients who’s lives literally depend on their opioid prescriptions.

Pharmaceutical companies make a fortune off of MAT and recovery programs because they manufacture Naloxone and Buprenophone, anti depressants and all drugs used in the multi billion dollar detox centers all across the country. So, the bill Trump just passed to encourage MAT programs continues to benefit big pharma while politicians can prop themselves up on the backs of those who are suffering from debilitating pain diseases.

The people who are loosing here are pain patients. The majority of patients who are prescribed opioids do NOT abuse their medications. Doctors have strict guidelines for prescribing opioids and even surgeons must adhere to new restrictions. Cancer patients and those who live with life threatening painfully debilitating chronic diseases no longer have access to the medications they need.

Big pharma will continue to profit while politicians can wave their badges of honor for enacting even more rigid laws that are increasingly leaving once active pain patients debilted because they have lost access to their opioid prescriptions. These laws are cruel and inhumane. They are fueled by misleading information and a bias towards the disease of addiction rather than those who legitimately need pain medications to have the most basic level of daily functionality. Suicide rates are skyrocketing while accesss to pain medications are plummeting and yet no media outlet ever mentions the correlation which is all to obvious for those who live with someone with a debilitatingly painful medical condition.

Don’t believe the hype! China manufactures chemicals that can be sold online and in head shops around the US, known as bath salts. Once one chemical compound is banned, they tweak it and release a compound that is not banned and the cycle continues. China is the main distributor for illegal Fentanyl that can be mailed and cooked up in someone’s home in a safer manner than Methamphetamines. Drug dealers and gangs have taken over small towns and cities all across the United States. These drug dealers lace their products with illegal Fentanyl because addicts are drawn to drugs that someone has od’d on. “It must be good product.” That is the mind set of an addict.

While the media continues to point the finger at the medical industry for overprescribing …. while the media continues to ignore the major changes in legislation that make getting a prescription for pain medication impossible for a dying cancer patient… people will continue to assume the fake opioids on the street are from a Doctor NOT a drug dealer who cooked it up in his basement.

Fake opioids laced with Fentanyl are on the rise because real prescriptions are now virtually impossible for people to get. These lies fuel the pharmaceutical industry by feeding the billion dollar recovery industry. Don’t be fooled by these laws. Overdose deaths are on the rise, suicide rates are skyrocketing…

The only way to stop the madness is to invest in mental health programs, have guidelines and protocols for Dr’s to use when prescribing opioids, start a national registry for pain patients and overhaul the healthcare industry to treat every patient with a multi modal approach to healing. Things like physical therapy being included in post surgical care, massage therapy and mental health experts are available to EVERYONE, when nutrition classes and prevention is a regular part of Family Medicine…. then and only then will we see a decline in substance abuse.

If someone had surgery and then suffers from chronic pain, yet are forced off of medications in 3 days post surgery, then is desperate for pain relief, they are labeled a drug addict. Without accesss to a long term compassionate, integrative post operative health care plan, we will continue to see the rise in Fentanyl related deaths. People will seek pain relief from the sources available and unfortunately the fake pharmaceuticals look identical to the real pharmaceuticals these days. This is how Prince died and thousands of others die every day. They are seeking relief for legitimate pain and are stigmatized and labeled an addict for simply trying to find relief.

This is a complex issue that we must continue to discuss and debate. If we continue to let the addiction narrative totally ignore the issue of PAIN then we will never be able to stop this cycle of skyrocketing addiction, overdoses and suicide rates that is sweeping our nation.

“America Has an Opium War. China Hadn’t Noticed”
— Read on www.google.com/amp/s/www.bloomberg.com/amp/opinion/articles/2018-12-03/america-has-an-opium-war-china-hadn-t-noticed

A New Opioid Law That Never Mentions The Legal Impact on Legitimate Pain Patients, Only The Impact on Addicts . “Opioid legislation is ‘historic in its breadth’

New bipartisan opioid legislation is clear progress in America’s fight against an ongoing opioid epidemic, experts told Yahoo Finance.
— Read on finance.yahoo.com/news/americas-new-opioid-law-historic-breadth-180938479.html

Spinal-cord stimulators help some patients, injure others

COLUMBIA, South Carolina (AP) — Desperate for relief after years of agony, Jim Taft listened intently as his pain management doctor described a medical device that could change his life. It wouldn’t fix the nerve damage in his mangled right arm, Taft and his wife recalled the doctor saying, but a spinal-cord stimulator would cloak his pain, making him “good as new.” Taft’s stimulator failed soon after it was surgically implanted. After an operation to repair it, he said, the device shocked him so many times that he couldn’t sleep and even fell down a flight of stairs. Today, the 45-year-old Taft is virtually paralyzed, a prisoner in his own bed, barely able to get to the bathroom by himself.
— Read on www.apnews.com/86ba45b0a4ad443fad1214622d13e6cb

WARNING TO THE FDA: BEWARE OF “SIMPLE” SOLUTIONS IN CHRONIC PAIN AND ADDICTION – National Pain Report

WARNING TO THE FDA: BEWARE OF “SIMPLE” SOLUTIONS IN CHRONIC PAIN AND ADDICTION – National Pain Report
— Read on nationalpainreport.com/warning-to-the-fda-beware-of-simple-solutions-in-chronic-pain-and-addiction-8833744.html