All You Ever Wanted To Dysautonomia


Definition:

  1. Dysautonomia refers to a malfunction or disorder of the Autonomic Nervous System (ANS). This is usually involves failure of the sympathetic or parasympathetic nervous system; but it can also mean that the ANS may be overactive. Dysautonomia refers to the “involuntary” systems of the body. This can include: body temperature, blood pressure, respiratory/breathing, sleep, heart rate and more. Dysautonomia can be considered “Local” as it is in many cases of CRPS, or it can be a total Autonomic failure. Sometimes Dysautonomia is considered to be “acute” and reversible. Other times it may be chronic and progressive (as in Diabetes or Parkinson’s). A person may be diagnosed with Dysautonomia by itself, as a condition. It can also be associated with degenerative and neurological diseases. Dyauatonomia is actually an “Umbrella term” used to describe many different issues that occur due to the malfunction of the Autonomic Nervous System.Lastly, Dysautonomia is responsible for our “fight-or- flight” response. This is what gets our body ready for stressful situations. When the nerves of the ANS are damaged, you can get Autonomic Neuropathy as well. These dysfunctions can range from mild to life threatening.
  2. What People Are Saying: people are saying that Dysautonomia is a common ailment among people with autoimmune illnesses, CRPS, Chiari, Ehler’s Danlos Syndrome (EDS) and even Diabetes. The most common symptoms that people in the chronic pain community speak about is a fall in blood pressure during standing or “Orthostatic Hypertension” or a rapid pulse rate. Other things that are said about Dysautonomia are that it causes abnormal sweating, emotional instability and motor incoordination.
  3. Symptoms: Some symptoms of Dysautonomia *(aka Autonomic nerve disorders) are: syncope (fainting), Orthostatic Hypotension and/or intolerance, POTS (Postural Orthostatic Tachycardia Syndrome), Gastroparesis, Intestinal Dysmotility, constipation, Erectile daysfunction and neurogenic bladder. Other symptoms include: fatigue, light-headedness, weakness and cognitive impairment. In Dysautonomia involving the Gastrointestinal tract, the patients often feels nausea, bloating, vomiting and abdominal pain, when the ANS malfunctions.
  4. Possible comorbidities: Possible illnesses that go along with Dysautonomia can include: CRPS, EDS, Chiari, Gastroparesis, Autoimmune illnesses, Lupus, POTS, NCS (Neurocardiogenic Syncope). Other co-morbidities include: Multiple Sclerosis, RA (Rheumatoid Arthritis), Celiac Disease, Autonomic Neuropathy & Sjogren’s Syndrome etc. The worst form of Dysautonomia, which is a fatal form that occurs in adults ages 40 and up, is called MSA. This means, “Multiple System Atrophy”. It is similar to Parkin-son’s disease but MSA patients become fully bedridden wishing 2 years of diagnosis. But please note that this is very, very rare and only about 350,000 people have the MSA form, worldwide.
  5. Treatment options: There is no cure currently for Dysautonomia at this time but secondary forms can improve with treatments for the underlying disease. You can help the Orthostatic hypotension by elevating the head of the bed, rapid water infusion (given rapidly in an IV) and eating a higher salt diet. Other treatments may include exercise and healthy diet.
  6. FDA approved medications: Midodrine is an FDA approved medication that helps with the syncope and collapse.
  1. Complimentary Therapies: Biofeedback and exercise with the right amount of salt may help some of the symptoms of Dysautonomia. Biofeedback can teach you how to calm yourself of anxiety which often comes with this illness. There was a Webinar back in early Winter 2017, that US Pain hosted. It was about “Earthing” or “Grounding (”http://forums.phoenixrising.me/index.php?threads%2Fi-think-earthing-cured-my-dysautonomia-pots.24992%2F and this therapy has been known to help this person; who wrote her experiences about “Grounding” helping her symptoms of Dysautonomia. *I was also prescribed a “cooling vest” to help with the feeling of overheating inside of my body
  2. Best nutrition: higher salt intake and staying hydrated are the two most important things to remember with Dysautonomia and nutrition.
  3. Best exercise regime: Exercise can be difficult when you feel very fatigued and barely able to stand at times. Also, you need to get the permission of your Physicians before starting any exercise program. Also, staying hydrated while increasing aerobic exercise, lower extremity strengthening, increasing fluid/salt intake and psychophysiologic training for management of pain and anxiety, along with family education. People also say that exercise intolerance is part of Dysautonomia but it is essential to helping with it. Start off slowly and avoid exercises that cause orthostatic stress. This includes minimal or no vertical movement, including rowing, recumbent biking or swimming.
  1. . Local Support groups: Local support groups can be found at the website: “Dysautonomia International”, here: Dysautonomia International and you may email Dysautonomia International at: info@dysautonomia for online support group resources. They do not verify the accuracy of information posted in the groups*.
  2. . Links to other organizations and websites and additional info: The best website with a lot of information here: ( Dysautonomia International ) at “Dysautonomia International”. They have links to support groups and online support, as well as diet and exercise tips.
  3. : Personal story for someone to connect with: Dysautonomia is something that I was likely born with. I was involved and injured in two automobile accidents that have inevitably made it much worse. First in 1983, I was hit by a drunk driver while sitting at a red stop light. Secondly, in 2002, a man in a pickup truck, ran through a red light and I suffered multiple injuries and had many surgeries. I also suffered an MTBI or “MildTraumatic Brain Injury”. One of my treatment team of Dr.’s is a Neurocardiologist, and he told me that my Dysautonomia was made much worse due to the “sloshing” of my cerebellum against the skull wall. I do have severe systemic CRPS, Chiari, RA, Autonomic Neuropathy, Polyneuropathy in Collagen Vascular Disease (aka EDS type 4/vascular) and Gastroparesis. These are all hallmarks of the umbrella illness of Dysautonomia. Following the auto accident in 2002, I was fainting quite often. We found out that my brain was not telling my heart what to do, because I have Autonomic Nervous System Failure. I ended up requiring a dual changer pacemaker. It now does 87% of the work for my heart. I am very lucky to have found a wonderful specialist in Dr. Blair Grubb, MD at the University of Toledo Medical Center. He is known around the world as far away as the UK!

**Various other personal stories for me are found here at my blog “Tears of Truth” and at: tearsoftruth.com:

A). Dysautonomia/POTS & S.I.B.O. and this one: Article about Dysautonomia/POTS & SIBO

B). Another article for you!Https://Wordpress.com/post/tearsoftruth.com/9263

Helpful YouTube Videos:

A. Dysautonomia/POTS

B.Dr Blair Grubb on POTs

***Informational Sources:

1. Dictionary.com on Dysautonomia

2. Medical News Today in Dysautonomia

3. Dysautonomia International

4. http://forums.phoenixrising.me/index.php?threads%2Fi-think-earthing-cured-my-dysautonomia-pots.24992%2F

5. Dysautonomia International more on Dysautonomia

6. Mayo Clinic on Dysautonomia

7. Healthline.com on Dysautonomia

8. Clevland Clinic on Dysautonomia

9.WordPress blog “Tears of Truth” on Dysautonomias

Letter To Leaders of Oregon Forced Taper


Below I’ve copied the letter that I wrote to the leaders of the state of Oregon, regarding their new proposal for forced taper off of all opioids in their state:

To Leaders of the state of Oregon,

I am writing to you with a plea for all of your constituents, as well the entire chronic pain population in the USA. What you are proposing to do, by eliminating opioids, is considered torture by the World Health Organization. You are also setting a precedent for other states, if this action against all opioids goes through!

When I’m proposing a big change, even just in my own household; I try to put myself in the place of other family members that my change will affect. Please put yourself in the “shoes (so to speak)”, of the thousands & later on, millions of chronic pain patients that you’ll be affecting and in reality, torturing. If you remove all opioids from your state, the suicide rate will increase dramatically and many intractable pain patients and their families will suffer.

Please think about what you are doing to trauma victims, burn victims and people with horrible chronic pain illnesses and cancer. Would you want to suffer with daily horrible pain, or would you want to take something that has been working for possibly even a decade (or more); to give you some semblance of a life with your children, grandchildren and/or your family. 

Please reconsider this act of cruelty and torture on those living with chronic pain in your state (& then future areas as well).

Thank you for reading my letter and I truly hope that your conscience will help you make the right decision for people who live with pain 365/24/7. Also remember that it could be you or your child, wife or parent at any time. We never know from day to say, what might happen. One minute I was sipping lemonade at an art fair; the next moment, I was hit by a car when the driver ran through a red light. This started my life of pain and I never could have imagined what this new life would be like.

Peace & Hope,

Suzanne Stewart

**Below is a photo screenshot that I took Of the reply that I received back from them:

Becoming Incurable Crowdfunding Campaign


Please watch this short video and see how this film producer is bringing awareness of Chronic pain and Chronic illnesses to the big screen!

If you prefer to visit my advocacy YouTube Channel to watch this, you can visit: WWW.YouTube.Com/Suzydukettes….

BUT my newest Youtube video is right here for you to watch -and it’s only about 4 minutes Long: I hope you will enjoy, learn & help in any way possible with the crowdfunding campaign, at: http://www.seedandspark.com/fund/becomingincurable

Here is a very short 4 minute video: (Thank you for Watching):

Becoming Incurable Crowdfunding Video

Forest Is One Tree That Will Not Fall Without Being Heard!


Hello Luvs,

I just wanted to get something up today that would let many more people know & learn about Dr. Forest Tennant. I want everyone to know what is happening to this good man; this awesome wonderful doctor and friend of mine. I’m working on my own blog post but I wanted this up so that you could learn quickly and start helping. I want you to learn about Dr. Tennant and what he does for people. He helps the sickest of the sick. He helps people that other doctors don’t want to be bothered with; they just want to throw them away! Dr. Tennant is a good man and he doesn’t deserve what is happening to him. What’s happening now, is like what we think might happen in some Third World country!! Our country is changing for the worse! This isn’t the USA I ever remember and loved! What’s happening is fear mongering, craziness, bullying, and who knows what else?

Dr. Jeffrey Fudin, is a very close friend of Dr. Forest Tennant. I asked him if I could re-post this story from his blog today. He gave me permission to do so. I need to make sure you know that I did not write this piece. It is totally all Dr. Fudin’s writing & work here today except for this introduction. Please visit his blog @Paindr.com :

**(Copied with permission from Dr Jeffry Fudin, B.S., Pharm.D., FCCP, FASHP)

Diplomate, American Academy of Pain Management

#DropTheTennantCase

Forest is one tree that will not fall without being heard:

I was shocked to learn of the Gestapo tactics the DEA organized in the attack against Dr. Forest Tennant.  What kind of world do we live in? I am not at all surprised however to see the outrage amongst my peers to rise up in support of Dr. Tennant’s well-mannered and careful dedication to his patients. When asked an open-ended question by a prominent professional group regarding this mockery, my first response was, “Perhaps the DEA did the world a favor – this time they screwed with the wrong person and their bungling actions will reverberate pervasively.” I suspect almost every leading pain clinician scholar will line up to offer expert witness services in support of Dr. Tennant should the DEA contemptuous actions against Dr. Tennant ever make it to court.

If anybody Tweets, posts, or shares any comment on social media, please include this hashtag, #DropTheTennantCase.

In the last few hours we already see two posts, The DEA Raids the Offices of My Friend and Colleague, Dr. Tennant and DEA Raids Dr. Forest Tennant’s Pain Clinic. Keep them coming and be sure to add #DropTheTennantCase.

Dr. Morty Fein was kind enough to provide some backdrop and clever insight to the alternative news associated with the DEA raid on Dr. Tennant and the patients the patients and community that will be harmed as a result.

Here’s what he had to say in his piece entitled,

The Fifth Vital ….Sigh

When there is regime change there is often a purge of anything and everything associated with the prior (often disgraced) movement and its rulers. History gets rewritten and we move on to a new and improved world. In pain politics, the opiophiles have been replaced by the opiophobes in power and every remnant of prior rule, every concept and tenet ends up getting dragged through the mud and discarded. Sigh.

Witness what has happened to the notion of pseudoaddiction. It has been ridiculed without a critical look at its continued importance. Because an executive from a company accused (often correctly but just as often overzealously) of overzealous marketing of opioids wrote an “n of 1 paper” based on a sincere and accurate appraisal of a troubling observation during his early years of pain practice – many years before he left practice and became an executive – the notion has been tied to overpromotion of opioids in the media and by opiophobes. Never mind the fact that the notion is even more important now since the stingy approach to opioid availability is daily leading to even worse pain control for millions and in turn causing desperation. And desperation can lead to people acting in ways that are uncharacteristic of them and their behavior construed as a sign of addiction. Happens every day. Often. Several authors, including the original authors, have over the years written about the need to re-evaluate the concept; not the validity of the observation but in what clinicians need to do to safely respond to it. The answer is not the knee jerk raising of opioid doses that became a bit of a caricature during the early days of the opiophile revolution, but a reappraisal of the totality of the patient’s pain regimen and approach and a sincere respect for the fact that a person taking liberties with their opioids or augmenting with anything including street drugs can indeed trigger a behavioral loss of control that needs to be addressed and not solely relying on improved analgesia to stop the behavior. Loss of control and uncontrolled pain are not mutually exclusive. Regardless of what drives the drug taking behavior and loss of control, abuse and even overdose can result. Perhaps this is why lowering MSEs nationally is not decreasing the number of opioid overdoses and in fact they are increasing them. The notion is self-effacing for us HCPs – that it is our failure to control pain that can drive the desperation and we have the responsibility to help fix it and the behavioral syndrome accompanying it – if anyone has the time and reimbursement anymore in our healthcare system for this much soul-searching and critical thought. Sigh.

And of course, the pain as the 5th vital sign movement has also been ridiculed as a simple ploy by pharma to lead to more pain assessment solely because it would lead to the more opioid prescribing not to simply bring pain and suffering out of the shadows and raise awareness. Outrageous and laughable contend the opiophobes. That people suffer in silence, that they are afraid to tell their health care providers, that unless they are asked they will often assume that discussion of their pain is not the purview of the providers with whom they are interacting is a trite every day observation doesn’t prevent throwing the baby out with the bathwater. Pain as a 5th vital sign is a movement about communication not treatment. Let us not go back to the bad old days of don’t ask don’t tell about pain and suffering. Want to change the name of it? Fine. But we shouldn’t stop efforts to ask about our patients’ experiences of suffering. We should avoid knee jerk reactions driving what we are going to do about it. Simply because someone reports their pain as “8 out of 10” doesn’t mean we should knee jerk raise their opioid dose nor should we knee jerk increase the frequency of their meditation sessions. It requires time and thought and a self-effacing attitude that we can do better for the person and a commitment to do better for the person. If anyone has the time and reimbursement anymore in our healthcare system for this much soul-searching and critical thought. Sigh.

And while we are on the subject of regime change, some of the most expert, most ethical and most erudite former leaders in the opioid movement are being dragged through the mud and the legal system on virtually a daily basis nationwide, tormented by district attorneys and ambulance chasers who would beg any one of them to care for them or their family members if they were stricken with severe and unrelenting chronic pain. Virtually everything they ever wrote, said or did being misportayed and  misrepresented as they get held responsible for consequences of treatments that occurred in jurisdictions they never set foot in. As if writing or talking or doing everything they could for opioid safety was just a ploy for pharma to push more drugs. No, it was a move to try to help others if they were going to do opioid therapy to adopt a seriousness and responsibility and acquire expertise like their own. They may have overestimated the integrity of their peers that went on to run pill mills but they never advocated for pill mills. They may have underestimated the size of the gap between their own expertise and that of their brethren that would try to emulate them. But they never advocated for carelessness or lack of responsibility. They wanted us all to take a self-effacing (i.e. that we all need to learn more about pain) and responsible and thoughtful approach. As if anyone has the time and reimbursement anymore in our healthcare system for this much soul-searching and critical thought. Sigh.

This brings me to the raiding of the home and practice of the beloved and venerated Dr. Forest Tennant. His Thanksgiving gift was a storm trooper’s boot in his door – by a cop who has a better sense of what the doctor’s patients need than the doctor (with 50 years plus of experience) does. And who I am certain would beg Dr. Tennant to care for him and his family if they were stricken with unrelenting chronic pain.  Dr. Tennant called them and their scare tactics out in an interview right after the events and he intends to fight. Be Brave! Don’t run Forest, don’t run!

Free the Opioid 5 I say.

It is time to stand and fight. Regime change and the re-writing of history must stop now. Our support for these 5 is vital. Sigh.

This is taken with permission, from the Blog of Dr. Jeffry Fudin @paindr.com and here’s the link: http://paindr.com/forest-is-one-tree-that-will-not-fall-without-being-heard/

Here’s some information about Dr Fudin. This information was taken directly from his own website/Blog , also at paindr.com…. I didn’t want to get anything wrong and so this too, is directly copied from his Blog. All rights are reserved by him and everything here today is all his work and his writing and not mine! Please read about Dr Fudin:

Jeffrey Fudin, B.S., Pharm.D., FCCP, FASHP

Diplomate, American Academy of Pain Management

Founder & Chair, PROMPT (Professionals for Rational Opioid Monitoring & Pharmacotherapy)

Owner & Managing Editor, PainDr.com

Director, Scientific and Clinical Affairs, REMITIGATE, LLC in Delmar NY

Director PGY2 Pain Residency Stratton VA Medical Center in Albany NY

Adjunct Associate Professor, Western New England University College of Pharmacy

Adjunct Assistant Professor of Pharmacy Practice, University of Connecticut School of Pharmacy

Section Editor, Pain Medicine

Dr. Fudin graduated from Albany College of Pharmacy & Health Sciences with his Bachelors Degree and Pharm.D. He completed an Oncology/Hematology fellowship at SUNY/Upstate Medical Center.  He is a Diplomate to the American Academy of Pain Management and a Fellow of both the American College of Clinical Pharmacy and the American Society of Health-system Pharmacists.

Dr. Fudin is a Section Editor for Pain Medicine, Founder/Chairman of Professionals for Rational Opioid Monitoring & Pharmacotherapy, and peer reviewer for several professional journals.   He has participated in developing practice guidelines for use of opioids in chronic noncancer pain (APS, AAPM collaborative) and participated in national and international guideline development for arthritis, fibromyalgia, and palliative Care. He has also participated in the development and co-author guidelines for the treatment of opioid-induced constipation. He is consultant to a national panel to develop consensus guidelines for the proper use of urine testing in addiction medicine, a collaborative effort with the National Association of Addiction Treatment Providers (NAATP), Center for Lawful Access and Abuse Deterrence (CLAAD), and the American Society of Addiction Medicine (ASAM). And he is a panel member for new urine test guidelines under development by the American Academy of Pain Medicine.

Dr. Fudin is President and Director for Scientific and Clinical Affairs for REMITIGATE, LLC, a software development company specializing in opioid safety. He practices as a Clinical Pharmacy Specialist and Director, PGY-2 Pharmacy Pain Residency Programs at the Stratton Veterans Administration Medical Center in Albany NY.  He holds adjunct faculty positions at University of Connecticut School of Pharmacy, Western New England University College of Pharmacy in Springfield MA, and Albany College of Pharmacy & Health Sciences.  Dr. Fudin has been an invited speaker on pain management nationally and internationally.

Dr. Fudin is founder and Chair of Professionals for Rational Opioid Monitoring and Pharmacotherapy (PROMPT), owner and managing editor for paindr.com and founder of Remitigate LLC, a software development company that has launched an application to help clinicians interpret urine drugs screens with several pipeline products including a pharmacogenetic applications and other opioid safety software initiatives.  He is a prolific lecturer, writer, and researcher on pain management topics and he served as a Task Force member for the Board of Pharmacy Specialties (BPS) for role delineation study/practice analysis of pain and palliative care pharmacy. He was awarded the American Academy of Pain Medicine’s Presidential Commendation in 2014, in recognition as “a voice for scientific integrity and an advocate for people in pain.”

Never Judge By Outward Appearances 




During this September 2017, we have been urged by the U.S. Pain Foundation, to share our story on social media.  I was reluctant to do this, but then I decided to share after a mini documentary that my husband & I were involved in was released.  Let me explain:

I was recently involved in a video on Social media, called “Becoming Incurable”, directed & produced by Victoria Suan.  I’ve had several people see that video, which shows only a minuscule piece, of one very small illness that I live with.  People saw me with a nebulizer and now think I have only Asthma.  Asthma isn’t fun even on its own. But between this and seeing me involved with the U.S. Pain Foundation during Pain Awareness Month especially;  many people are assuming things that shouldn’t be assumed.  None of us like being assessed by what we look like on the outside; with regards to Invisible illnesses.  Several persons have told me that they “wish they only had what I have”.  Others have said that “they wish they could do more & be involved more, like I am able to do “. 

My name is Suzanne and I have been disabled since 1999; 1st from PTSD and stage two chronic Kidney disease. In August 2002, I was in a motor vehicle accident which caused multiple injuries,including:   a Traumatic brain injury, hearing loss (I acquired 2 hearing aids), vision lessened & eye issues, many (approximately 8) surgeries, & 3 years of TBI rehab. I still suffer with short term memory loss and other effects from the TBI.  In 2003, I had to have a dual chamber pacemaker placed for “Sick Sinus Syndrome”  (it is a Bradycardia/Tachycardia Arrythmia), along with Dysautonomia/POTS.  After seven or eight surgeries and a pacemaker, I was diagnosed with” Complex Regional
Pain Syndrome”, in 2007. It started in my right foot after surgery and it spread over the years to both feet & knees.

 In 2005, I had an M. I. or heart attack. In 2006 after the heart attack, I was diagnosed with Atrial fibrillation and was put on Blood thinners. But, I suffered a CVA/stroke in 2006. I have Mitral valve prolapse, Tricuspid valve prolapse, mild Pulmonary Valve Hypertension, 

In 2013, I had to have pacemaker replacement surgery (my first pacemaker was placed in 2003). When the Heart Surgeon got inside of my chest, they found that the entire pectoral muscle had to be totally rebuilt. The old pacemaker had been placed in the muscle instead of inside of a bag near the muscle. Over 10 years, It wore a hole right through my pectoral muscle and then had to be rebuilt during a long surgery, which was a very painful recovery afterwards. The Dr. informed me that aside from the Systemic CRPS, the continuing post surgical pain and Lymphedema in my left arm, is similar to the pain that occurs after a mastectomy.  Though, I did not have a Mastectomy.  

 The surgeon, a Neurocardiologist, had researched RSD/CRPS & did an internal surgical wash of Bipvucaine to try and “head off”systemic CRPS, & prevent it from spreading. It ended up being unsuccessful and the CRPS progressed into “Severe, Systemic/Full body CRPS”. It’s spread everywhere including my eyes and my mouth.  

 I have a few other chronic pain illnesses, including: CKDII, Arnold Chiari Malformation I (with Chiari Migraines),
Degenerative Disc Disease, RA, OA, Gastroparesis, S.I.B.O., Chronic Erosive Gastritis, Autonomic Neuropathy, Polyneuropathy in Collagen Vascular Disease (EDS-4/vascular), multiple herniated & bulging discs (with L4-5 Radiculopathy) at L4,L5& S1 + C5,C6 & C7. CID (Combined Immunodeficiency Disease/an Autoimmune disease), Eczema, Prinzmetal Angina (aka “Coronary Spasms”), Lymphedema, Scoliosis, Asthma, CAD, Right Long Thoracic Nerve Neuropathy, Severe Dry Eye, and just too much to mention here today! But you get the idea!  

I’m not the only one! There are so many chronic pain warriors with a list as long or longer!  I’m not a candidate for a Spinal cord Stimulator or an Intrathecal pain pump, because of my “Combined Immune Deficiency Disease”. It could cause paralysis and/or infection in my Spinal cord. So I’m limited in what I can do for my chronic pain. I’m one in a group of chronic pain patients, who has had to resort to taking pain medications. But in doing this, I can have some semblance of a life outside of my bed or the sofa. Believe me, since 2002, I’ve tried many, many medications starting with Lyrica & Gabapentin. I went through 8 years of physical therapy. I had to go to TBI rehabilitation for 3 years. I’ve had many braces, therapies, tests, TENS unit (prior to the CRPS) and more! Depending on the day & how much I need to do; I have:  hand braces, arm sleeve covers, 2 knee braces,     2 AFO’s, a wheelchair, Motorized scooter, walker and a cane. Right now the pain medications are what give me the ability to do some activities outside of my home, bed or sofa.  

 This is my story…. it’s  the “Readers Digest” short version.. It’s a long arduous and continuing saga of chronic pain and surgeries. But I just don’t give up HOPE. I make it a Verb and try to change negatives
into positives. Rather than do nothing, I try to do something. For fun, I make You Tube Videos of my favorite songs or stories translated into American Sign Language (@ASLSuzyQ).

 I’m an Ambassador for the U.S. Pain Foundation. I write in my blog, “Tears of Truth” @tearsoftruth.com. I am a writer
for the National Pain Report.  I also founded & run a few support groups for chronic pain & RSD/CRPS.  I’m also a chemo-angel. I am part of a collaboration group to help with the Opioid crisis (the crisis being the lack of Opioids now & the government taking pain meds away from legitimate chronic pain patients).  I am a patient leader for WEGO Health and a mentor for newly DX CRPS patients for RSDSA.  Setting all of this aside, just as one of my previous blog posts/ news articles states: “There are no competitions and no winners!”  (Can be read in this blog or here at the Ntl. pain Report: http://nationalpainreport.com/no-competition-no-winners-8833089.html)

In July 2017, I was certified by the U. S. Pain Foundation, to lead an “in-person” Support Group. Without having my wonderful, loving husband/caregiver, Craig; my loving U.S. Pain Foundation Family, my WEGO health friends, my friends, family and my writing, I’d be lost in all of this. 

Here’s the link to my Facebook page for this blog. This link takes you directly to the video called “The Incurables”:  https://www.facebook.com/TearsofTruth.SuzanneStewart/posts/1943805715875595


Preventable Suicide Crime Scene


Someone help this woman! This is a crime! They treat animals better than people so what’s wrong with this picture? This must stop! People are committing suicide because they’re being denied pain medications! Please watch this short video and it will open your eyes to the TRUE OPIOID crises going on in the United Stated of America! Someone please help this woman and the other 100 million chronic pain patients who are in agony now bcz of what’s being misunderstood as addiction, hyperalgesia and worse! This lack of opioid pain medication to true legitimate chronic pain patients, has to stop! We are not disposables! We are in agony and we are human beings with rights like every living soul! Please learn about the difference between dependence and addiction! Addiction is a non-stop ruminating, craving and a need to get high from taking some kind of medication or drug! People with Chronic pain get “addicted” 1% of the time, due to pain medication! We are “dependent” NOT addicted! Our bodies will go through a physical withdrawal when the meds are taken away! But we do not WANT to need the pain medications. We do NOT get high or euphoric from the opioids! We get to live some semblance of a life outside of a hospital or a bed in our homes! Please help because too many people have died already! Stop being hysterical and blaming real and legitimate pain patients because someone you know died from an overdose! I’m so sorry for you, but don’t punish everyone because you’re in misery! Find compassion in your heart and watch this woman’s story for about 3-4 minutes! Thank you!

Thank

Under-treated Chronic Pain Can Kill


Photo Sep 24, 9 05 35 AM (1)

Untreated or under treated Chronic pain can kill! There are many articles that discuss this topic but I’m writing from the chronic pain patients perspective. Most things that are written are authored by Dr’s and others in the medical profession. But for me and for us this is real! Sudden cardiac death is a frightening topic to discuss. This is true especially because many chronic pain patients live with the risk factors that are written about in the articles and medical journals etc. Personally, I have a pacemaker for not only Dysautonomia & POTS, but for an Arrythmia called “Sick Sinus Syndrome”! Additionally, I. live with Atrial fibrillation, MVP & TVP (mitral valve & tricuspid valve prolapse), CAD (coronary artery disease) & long QT syndrome! In 2005, I had a heart attack and in 2006, a CVA or stroke. Enough about me, but I’m trying to paint the picture that I am not alone in this. Many chronic pain patients have several comorbidity’s. If the CDC continues with this crazy “war on opioids”; taking our pain medications down to dangerously low & restricted levels, people will die! I may die as well, and I’m not being dramatic!

So many people, including our clueless government representatives do not realize that severe untreated chronic pain can lead to death. They think it is just an innocuous “pain in the behind” for those that live with it. It doesn’t interfere with their lives or the lives of the CDC, FDA and several others such as, Big Pharma and the many physician run drug treatment centers in the USA. But when suddenly, chronic pain “hits” one of their family members, then they start advocating more. But why do they have to wait until it happens to their family members or even themselves? Why can’t they listen to our cries of suffering now, before more of my friends die suddenly from the agony of living with the daily unrelenting chronic pain without any reprieve? Does the government or the general public even realize that Veterinarians get about five times more education hours than medical students get for human beings living with chronic pain? I read that there was a study done in 2011, and the Journal of Pain found that the United States medical programs only allot approximately 5 hours of teaching time on the management of chronic pain. Our Canadian neighbors give their medical students a whopping 19 1/2 hours! This is where the medical professionals who educate the incoming physicians are at fault for their part in this “crisis” as it has been called.
Just this past week, the pain community, including the support groups that I administrate online, lost another chronic pain warrior. I lost my 7th friend in just over 2 years! This is the 3rd friend that I have lost to chronic pain and patients diminished access to pain medications. In my experience, it continues to be the same story; in that the chronic pain patient tells their significant other or family members that they are feeling worse. They go to bed to try and relieve their pain and they never awaken. My friends husband found her slumped over in her chair, late at night when he checked on her. It’s not unusual for most pain patients to stay up very late watching T.V. or “playing” online to keep our minds off of the pain for awhile. When the coroners do an autopsy on a person who has died suddenly, and they find “drugs” in the bodily fluids; they blame the opioids. These are educated people, toxicologists an forensic medicine physicians. They seem to just blindly blame these deaths on the opioids instead of seeing the possibilities that exist. It could have been death from pain that was unrelenting and untreated and/or misdiagnosed and under treated. Maybe more of my friends died from the sudden drop in their pain medications?
What is it going to take to get the government to listen to our pleas? I’ve written and sent the same letter to the White House twice and have gotten no response. I’ve made videos on YouTube to explain this crisis in Chronic pain community. I was hoping for at least one of them to go viral. But instead, the viral videos are about usually someone falling off of a chair or a baby biting his brothers finger! How do we get them to listen to us? I agree with the fact that Opioids should not be the first option for people with chronic pain. I also agree with the research that’s being done on medications that cannot be crushed or melted to become more potent for those that do abuse them. But for those patients who have been on a “normal amount” and steady dosage of Opioids for a long period of time; why not leave them to the physician(s) that know them? Let the Doctors who’ve treated them for many years, take care of their patients without fear of Federal agents breaking into their clinic during hours and scaring everyone half to death! If someone has been taking opioids for a long time and the dosage remains the same and it’s working for them, can we not leave them alone? Let them live some semblance of a life outside of their bedroom or recliner. When I say “them”, I mean “us” and we are dependent but not addicted to these medications. These are not “powerful, strong meds that loop us out of our minds” as I’ve heard on several occasions. These are the medications that we need, in order to have a small amount of active time during the days. We aren’t asking for more and we agree to the submissiveness and feeling of personal character attacks with urine drug screening. We sign the contract with our pain management physicians. So why not just let us live our lives and stop attacking us and calling people who live with chronic pain, “drug addicts”.
Anyone who calls people living with daily struggles of unrelenting pain, “addicted”; needs to learn more and be educated about opioid use with chronic pain patients who have several high pain illnesses. Not only do they need to learn more, but they need to be empathetic and try to put themselves in the pain patients place for a moment or two. People, especially those in positions of power; need to think about what their lives would be like if they could barely get out of bed in the mornings. What if they couldn’t go to their fancy dinners or dances, due to chronic pain and and unrelenting fatigue? I’d say they wouldn’t like it very much and neither do we! How do we get these officials to learn the difference between the words “addiction” and “dependence” before more of my friends die from under treated pain or lack of any treatment?

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