Untreated Pain May Lead To Sudden Cardiac Death

Untreated Pain May Lead To Sudden Cardiac Death

Hello Luvs,

Sudden cardiac death is s scary topic to talk about, much less write about! Especially since some of the topics they speak of in this article below (written by the great, Dr Tennant, M.D.); I have and live with!  I have a pacemaker for not only Dysautonomia & POTS,but for an Arrythmia called “Sick Sinus Syndrome”! Also I have Atrial fibrillation and MVP & TVP (mitral valve & tricuspid valve prolapse)! I have CAD (coronary artery disease) & long QT syndrome! I have had one heart attack or M.I. In 2005 and I had a CVA in 2006 and 2 mini strokes! I live in pain every day from several pain illnesses, the worst being systemic CRPS & Chiari I (because I get terrible migraines in back of my head & neck)! Enough about me, but I’m just expressing a bit of fear!  I’d already known that untreated pain can KILL you, me , us; but Dr. Tennant’s article just proves even more of the same!  If the CDC takes our pain meds down to a very near zero & restricted level, people will die! I am sure that I’ll die as well….I’m not being dramatic!  Read Dr. Tennant’s article please? He’s a leading expert MD, & retired (I believe) pain Dr!

Sudden, Unexpected Death in Chronic Pain Patients
Severe pain, independent of medical therapy, may cause sudden, unexpected death. Cardiac arrest is the cause, and practitioners need to know how to spot a high-risk patient.
By Forest Tennant, MD, DrPH

Page 1 of 3
Sudden, unexpected death may occur in a severe, chronic pain patient, and the terminal event may be unrelated to medical therapeutics. Fortunately, sudden death is not as commonly observed in pain patients as in past years most likely due to better access to at least some treatment. Sudden death still occurs, however, and practitioners need to know how to spot an “at-risk” patient.
Unexpected, sudden death due to severe pain is poorly appreciated, since many observers still view severe pain as a harmless nuisance rather than a potential physiologic calamity. In many cases, just prior to death, the patient informs their family that they feel more ill than usual and seek relief in their bed or on their couch. Unfortunately, some of these patients don’t awaken. Other patients die, without warning, in their sleep or are found collapsed on the floor. Modern medicine’s aggressive toxicology and forensic procedures after death have contributed to the poor understanding of pain’s death threat. In some cases, a pain patient that was being treated appropriately with an opioid or other agent with overdose or abuse potential has suddenly and unexpectedly died. Drugs were found in body fluids after death, and in my opinion a coroner wrongly declared the death to be an “accidental overdose” or “toxic reaction” to drugs rather than implicate the real culprit, which may have been an “out-of-control” pain flare.

This article is partially intended to call attention to the fact that the mere finding of abusable drugs at autopsy doesn’t necessarily mean that the drugs caused the death. In fact, the drugs may have postponed death. Some physicians have been falsely accused of causing deaths due to drug overtreatment when, in fact, undertreatment of pain may have caused the death. Additionally, opioid blood levels assessed at autopsy of a patient who died suddenly are all too often wrongfully considered accidental overdoses because the pathologist is unaware that chronic pain patients on a stable dose of opioids can be fully functional with serum levels of their prescribed opioids that far exceed lethal levels in opioid-naïve patients.1
Given here are the mechanisms of sudden, unexpected death in pain patients and some protective measures that practitioners must take to keep from being falsely accused of causing a sudden, unexpected death. More importantly, given here are some clinical tips to help identify the chronic pain patient who is at high risk of sudden, unexpected death so that more aggressive pain treatment can be rendered.
A Brief Anecdotal History

As a senior medical student at Kansas University in the early 1960s, I was required to take a rural preceptorship with a country doctor. In making our rounds one day to the county’s nursing home, I heard a farmer’s wife declare, “pain killed my mother last night.” Since then, I’ve repeatedly heard that pain killed a loved one. Folklore frequently mentions that people die “from,” as well as “in” pain. There is, however, little written detail of these events.
In the early years of my pain practice, which I began in 1975, I had several patients die suddenly and unexpectedly. This rarely happens to me today as I’ve learned to “expect the unexpected” and to identify which patients are at high risk of sudden death. In recent years, I’ve reviewed a number of litigation and malpractice cases of sudden, unexpected death in chronic pain patients. In some of these cases, physicians were accused of over- or misprescribing and causing a sudden, unexpected death, even though the patient had taken stabilized dosages of opioids and other drugs for extended periods. Also, the autopsy showed no evidence of pulmonary edema (a defining sign for overdose and respiratory depression). In cases where the physician was falsely accused, the post-death finding of abusable drugs in body fluids caused a family member, regulatory agency, or public attorney to falsely bring charges against a physician.
Setting and Cause

Unexpected deaths in chronic pain patients usually occur at home. Sometimes the death is in a hospital or detoxification center. The history of these patients is rather typical. Most are too ill to leave home and spend a lot of time in bed or on a couch. Death often occurs during sleep or when the patient gets up to go to the toilet. In some cases, the family reports the patient spent an extraordinary amount of time on the toilet just prior to collapse and death. Sudden and unexpected death, however, can occur anywhere at any time, as pain patients who have died unexpectedly and suddenly have been found at work or in a car.
Coronary spasm and/or cardiac arrhythmia leading to cardiac arrest or asystole is the apparent cause of death in the majority of these cases, since no consistent gross pathology has been found at autopsy.2-5 Instant cardiac arrest appears to account for sudden collapse or death during sleep. Perhaps constipation and straining to pass stool may be cardiac strain factors as some pain patients die during defecation. Acute sepsis due to adrenal failure and immune suppression may account for some sudden deaths.
Two Mechanisms of Cardiac Death

Severe pain is a horrific stress.6,7 Severe pain flares, acute or chronic, cause the hypothalamic-pituitary-adrenal axis to produce glucocorticoids (cortisol, pregnenolone) and catecholamines (adrenalin and noradrenalin) in an effort to biologically contain the stress.8,9 Catecholamines have a direct, potent stimulation effect on the cardiovascular system and severe tachycardia and hypertension result.10 Pulse rates may commonly rise to more than 100 beats per minute and even rise to more than 130 beats per minute. Blood pressure may reach more than 200 mmHg systolic and more than 120 mmHg diastolic. In addition to adrenal catecholamine release, pain flares cause overactivity of the autonomic, sympathetic nervous system, which add additional stimulation to catecholamine-induced tachycardia and hypertension. Physical signs of autonomic, sympathetic overactivity, in addition to tachycardia and hypertension, may include mydriasis (dilated pupil), sweating, vasoconstriction with cold extremities, hyperreflexia, hyperthermia, nausea, diarrhea, and vomiting.
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Last updated on: September 25, 2012
First published on: May 31, 2012
Severe pain, independent of medical therapy, may cause sudden, unexpected death. Cardiac arrest is the cause, and practitioners need to know how to spot a high-risk patient.
By Forest Tennant, MD, DrPH

Page 2 of 3
The combined physiologic effects of excessive catecholamine release and autonomic, sympathetic discharge may put such strain on the heart to cause coronary spasm, cardiac arrhythmia, and sudden death.11 Pain patients who have underlying arteriosclerosis or other cardiac disease are at higher risk of sudden death. For example, a patient with angina or generalized arteriosclerosis is at high risk, and should be aggressively treated. Anecdotal reports have been made in which a patient whose pain was well controlled on opioids died unexpectedly with an underlying cardiac disease. In one report, a 40-year-old pain patient on opioids was found dead and the autopsy revealed previously unrecognized coronary artery disease, which was determined to be the cause of death. Some patient deaths may be due to other comorbid conditions, whether known or not known, and may not be related to the pain problem.
Case Example #1

A 60-year-old male with severe pain due to Lyme’s disease–related arthritis has generalized arteriosclerosis. When his pain flares, he has hypertension, tachycardia more than 100 beats per minute, and angina. On numerous occasions, he had been hospitalized for chest pain and he regularly requires nitrates for emergency coronary relief. He was treated with a long-acting opioid for baseline pain and a short-acting opioid for breakthrough pain. This regimen has controlled his angina and has prevented hospitalizations for more than 2 years.
The second mechanism, which may produce sudden death, is adrenal insufficiency. The hypothalamic-pituitary-adrenal axis may acutely and suddenly deplete during episodes of severe pain resulting in a life-threatening drop in cortisol, aldosterone, and possibly other adrenal hormones (Figure 1).12 With a precipitous drop in adrenal hormone production, there can be a severe electrolyte imbalance (eg, low sodium, high potassium), which may produce cardiac arrhythmia and death. Although undocumented, some sudden deaths may likely be a simultaneous result of excess sympathetic stimulation and electrolyte imbalance.

Identification of the At-risk Patient

An active, ambulatory pain patient who has mild to moderate, intermittent pain is not at high risk for sudden death. The patient at high risk for sudden death is a severe pain patient who is functionally impaired and has to take a variety of treatment agents, including opioids and neuropathic drugs, to control pain. In all likelihood, the patient who has centralized pain and who has central nervous system inflammation due to glial cell activation is the patient who will likely have flares severe enough to affect the endocrine and cardiovascular systems. Acute pain severe enough to cause cardiac overstimulation and death is usually only seen with severe trauma. Pain as a result of modern-day surgery is well controlled by analgesics, so perioperative sudden death due to surgically induced pain, per se, is essentially a thing of the past. Accidents, trauma, and war wounds are exceptions. In these situations, a patient in excruciating pain who shows signs of excess sympathetic discharge needs progressive emergency pain treatment to control excess sympathetic discharge.13,14 Excess sympathetic discharge signs that can be discerned at the bedside, emergency room, or accident site include mydriasis, diaphoresis, hyperthermia, tachycardia, hypertension, and hyperreflexia.15,16
The chronic pain patient who is at high risk for sudden death can usually be spotted at a clinical visit (Table 1). Patient and family will give a history of functional impairment. The most typical history will be one in which the patient will have constant, daily pain intermixed with severe flares, which cause a bed or couch-bound state. Even though medication dosages may be high, they may not be effective enough to prevent pain flares and sudden death. The patient will likely demonstrate excess sympathetic discharge. By history, this includes waves or episodes of allodynia, hot and cold flashes, hyperalgesia, and severe insomnia. Physical exam may reveal excess sympathetic discharge by any or all of the following signs: tachycardia, hypertension, vasoconstriction (cold hands/feet), mydriasis (dilated pupil), and hyperreflexia.

Cortisol, pregnenolone, or corticotropin (adrenocorticotropic hormone) serum levels may be subnormal indicating that the immune and healing systems are impaired, leaving the patient subject to infections and interference with opioid effectiveness.
When high-risk indicators are found, therapeutic adjustments in type, quantity, and quality of pain treatment must be implemented to minimize or eliminate risk factors. In particular, there should be attempts to normalize hypertension, tachycardia, and hormone levels.
Methadone Administration And Sudden Death

Other than overdose and respiratory depression, the opioid methadone has been associated with a cardiac conduction defect (prolonged QT interval) called “torsades de pointes,” which may cause an unexpected, sudden death.17,18This defect may cause sudden death by cardiac arrests. No other opioid has been credibly associated with cardiac conduction defects. In addition to the problem of QT prolongation, many methadone-related deaths occur during the first few days of use, making the deaths in these instances more likely due to the prescriber’s unawareness of methadone’s long half-life and, therefore, accumulation in the bloodstream because the dose was titrated too quickly.
However, the recognition of QT prolongation has caused considerable controversy and many experts believe that an electrocardiogram should be done to screen for a prolonged QT interval before and/or during methadone administration.17 The occurrence of “torsades de pointes” with methadone is usually dose related and associated with concomitant use of antidepressants or benzodiazepines. If a patient who takes methadone suddenly dies due to cardiac arrhythmia, there will be no gross pathology at autopsy, which is typical of sudden death in a pain patient. The prescribing physician may, however, be accused of overprescribing methadone. Due to this risk, many physicians have made a choice to shun methadone and avoid the risk of being falsely accused for overprescribing. From a clinical perspective, the use of antidepressants and benzodiazepines should be restricted if methadone is prescribed, since these ancillary agents appear to facilitate methadone deaths.
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Last updated on: September 25, 2012
First published on: May 31, 2012
Severe pain, independent of medical therapy, may cause sudden, unexpected death. Cardiac arrest is the cause, and practitioners need to know how to spot a high-risk patient.
By Forest Tennant, MD, DrPH

Page 3 of 3
Risk of Sepsis

Although not well documented, acute sepsis and sudden death probably occur in some severe, chronic pain patients. The mechanism is probably initiated by subnormal serum levels of cortisol or other hormones due to adrenal depletion. Chronic subnormal adrenal hormone levels severely compromise the protective immune system in the body, rendering the patient susceptible to virulent bacteria and other pathogens.19,20 The author has frequently found extremely low levels of cortisol (fewer than 1.0 mg/dL) in undertreated intractable pain patients. One can only wonder as to how many pain patients have suddenly died from acute sepsis. Although documentation of this pathologic event is scant, practitioners should be aware that extremely low serum levels of adrenal hormones are known to be associated with a compromised immune system and sepsis.
Death Following Sudden Opioid Cessation

There is the misguided notion among some addiction and mental health practitioners that withdrawal from opioids is an innocuous procedure that is risk free. This school of thought says that only withdrawal from alcohol and benzodiazepines is risky. This is generally true unless the patient who is dependent upon opioids has severe underlying pain and is taking opioids solely for pain control. In some patients, opioids may mask underlying pain so well that a practitioner may not even believe that pain recrudescence is a possibility once opioids are stopped.
Patients who have severe pain that is well controlled by opioids may be sudden-death candidates if their opioids are precipitously stopped. If opioids in a severe pain patient are precipitously stopped, the masked pain may flare causing severe autonomic, sympathetic discharge and overstimulation of the adrenals to produce excess catecholamines with subsequent cardiac arrhythmia and arrest. Malpractice suits have occurred when opioids have been precipitously stopped in a pain patient. Here are two examples known to the author.
Case Example #1

A 45-year-old woman with fibromyalgia and severe pain was well controlled with extended release morphine for baseline pain and short-acting hydrocodone for breakthrough pain. She entered an in-patient detoxification program where she was told that fibromyalgia only required psychotherapy and no opioids. The detoxification program precipitously stopped all her opioids and placed her in isolation for punishment because she was using opioids as a “crutch” rather than “facing her problems.” She died suddenly about 36 hours after all opioids were stopped.
Case Example #2

A 42-year-old male had a work injury and subsequently suffered reflex sympathetic dystrophy (RSD) or complex regional pain syndrome (CRPS). His pain was reasonably well controlled with fentanyl transdermal patches (Duragesic) for baseline pain and short-acting oxycodone (OxyContin) for breakthrough pain. His workers’ compensation carrier had him evaluated by “experts” who claimed that pain couldn’t possibly exist for more than about 6 months after injury, and RSD and CRPS were not “legitimate diagnoses.” His workers’ compensation carrier, based on their “experts’” opinions, precipitously stopped all his opioids by refusing to pay for them. The man died suddenly 4 days after abrupt cessation of his opioids.
Value of Opioid Serum Levels

Patients who have severe chronic pain, take opioids, and demonstrate some high-risk signs and symptoms for sudden death as described above should have opioid blood levels done. Why? Legal protection. If a severe chronic pain patient who takes opioids suddenly dies, the practitioner may be accused of overprescribing and causing an overdose death unless he/she has pre-death opioid blood levels on the patient’s chart. Keep in mind that there will be no gross cardiac pathology at autopsy if the patient suddenly dies of a cardiac arrhythmia or arrest. And, the coroner will likely call the death a drug overdose and blame the prescribing physician. Here are two illustrative cases.
Case Example #1

A 28-year-old male, former football player had severe spine and knee degeneration. He died in his sleep and his death was brought under investigation by the coroner. At autopsy he had a methadone blood level of 400 ng/mL. The prescribing physician was about to be charged with negligence by the local district attorney, until the physician showed that, in life, the patient’s methadone blood levels ran between 500 to 650 ng/mL.
Case Example #2

A 58-year-old female with genetic porphyria had suffered from severe generalized pain for more than 20 years. She collapsed in her living room in sudden death. At autopsy she was found to be wearing three fentanyl dermal patches (100 mcg/hour). At autopsy she demonstrated a fentanyl blood level of 10 ng/mL and a morphine blood level of 150 ng/mL. Her prescribing physician was able to show the sheriff’s investigators that in pre-death treatment, she had fentanyl and morphine blood levels considerably above these found at autopsy. No charges were ever brought against the physician.

Although sudden, unexpected death in chronic pain patients appears to be declining in incidence due to greater access to treatment, practitioners need to be aware that sudden, unexpected death may occur independent of opioid administration. The precise mechanism of death is cardiac arrest or asystole due to coronary spasm, arrhythmia, and/or electrolyte imbalance. Severe chronic pain produces excess sympathetic discharge through the autonomic nervous system and overstimulation of the hypothalamic-pituitary-adrenal axis, which causes great output of adrenal catecholamines. The chronic pain patient who is at highest risk for sudden death is the patient whose uncontrolled pain and pain flares are so great as to cause a high degree of functional disability. Those pain patients who are ambulatory and active are not at high risk for sudden death. The attainment of opioid blood levels during treatment of patients who are at high risk for sudden death are advised as a medical-legal protection should opioids be present in blood after death. Patients who are identified as high risk should be monitored by regular clinic visits, and efforts should be done to control excess sympathetic discharge and adrenal deficiencies.
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Last updated on: September 25, 2012
First published on: May 31, 2012


My Letter To The CDC

My Letter To The CDC

Hello Luvs,

I just wanted to post for you, my letter to the CDC. It is in an attempt to help change some newly, “almost adopted” guidelines for prescribing Opioid medications! Their guidelines, say pretty clearly that Opiods should not be used for non-malignant pain. They only want to rarely use it and over regulate it even for malignant pain.  Even if your pain consists of many chronic pain illnesses, and/or if it is CRPS-#43 on the National pain scale, the”McGill pain scale. They set up guidelines to grossly lower the amount that some people may have been on for several years or many many years! 

The results can be disasterous if this goes through. Our voices need to be heard! I can only hope and pray that enough pain patients, their loved ones, their Dr’s and friends helped by also writing in during this open period for comments until Jan 13,2016! There’s still time!! Please read my previous blog post to this one. It explains all about how to do the comment writing. Also all of the information that you’ll need is in that prior post here at “Tears of Truth”! Here is the letter or comments that I wrote! (Be careful because I thought I’d submitted comments awhile ago!! But then I realized I hadn’t gotten a receipt or a tracking #! Something went wrong, so please make sure you get a receipt from the CDC, for your comments, along with a tracking #…Here are my comments below . This is what I sent:


Your comment was submitted successfully!

Agency: Centers for Disease Control and Prevention (CDC)

Document Type: Nonrulemaking

Title: Federal Register Notice: Proposed 2016 Guideline for Prescribing Opioids for Chronic Pain

Document ID: CDC-2015-0112-0001

*******Here are the exact comments that I have sent to the CDC, re: the Opioid guidelines.***


Docket ID: CDC-2015-0112

I was an Interpreter for the Deaf! I worked at a major hospital & schools. Now I’m a chronic pain sufferer! I was injured in a MVA, 2002! I suffer from the pain effects of : CRPS (#43 highest on the McGill pain scale). A horrible fire-like burning pain that starts with nerves but is progressively debilitating. It progresses to blood, bones, skin & more. Eventually loss of movement & continuous burning pain 24/7/365! I have Polyneuropathy in Vascular Collagen Disease, Autonomic Neuropathy, Arnold Chiari I, Degenerative Disc Disease, Right long thoracic nerve Neuropathy, L4/5 & S-1 Radiculopathy from multiple herniated & bulging discs & Prinzmetal Angina. I suffer the results of a CVA & 2 “mini strokes” with nerve pain & restricted movement, Dysautonomia/POTS with PAIN & other issues from a TBI s/p the MVA as well! I also have “Combined Immune Deficiency Disease”, which in lay terms means that I’m not eligible for an SCS nor a pain pump. The danger of infections and/or paralysis would be too great of a risk. This is one main reason that I must be able to continue the medications that manage my pain & have since 2002! Not many of “us” fit into a nice, neat little “box”. While bringing up the point of “not many”; “not many of us” ever become addicted to Opioids, in fact only about 5%! Our bodies may become physically dependent on these pain meds, but we do not get any kind of “high” from them! At best, they keep us just a little more comfortable. Don’t Diabetics need Insulin to survive? Don’t hypertensive persons have strokes without their meds? Those who suffer from Epilepsy need certain medications to live without seizures! I take what is called “Warfarin”. It’s truly a rat poison! In large doses it kills rats! But in a small dose just for me, it keeps me from having more CVA’s! Those meds are not good for the average persons bodies, but some groups of people need certain medicines in order to have some kind of life outside of their homes or a hospital! 

I’m a Chronic Pain patient and I would literally die without my Opioid pain medications! Chronic pain can kill people! There’s not only disease progression, but deaths by suicide will also increase as people lose hope of any relief or help for their pain! I can speak for myself and for many other pain sufferers, when I tell you that I’ve tried many other medications, PT/OT, Injections, epidurals, nerve blocks etc. Nothing dented my pain, until I was told by my pain Dr in 2003, to “try the pain meds”, and I did it! I will confess to you that the Opioids only help to take the “edge off”of this type pain. My pain Dr nor my GP can work miracles but they can try to keep me (*and others like me) as comfortable as possible….but only if you; the CDC, will allow them to continue?

I’ve been a health advocate since 2005! I am an administrator for 3 online support groups for Invisible Diseases/CRPS & Chronic Pain; as well as the organizer and administrator for “in person” support group “meet ups” in state of Michigan! I’ve been responsible for many successful fundraisers for Pain illnesses. I am a “Mentor” for newly diagnosed CRPS patients. I truly try to stay positive and use my life to help others because I felt so isolated in the beginning. I even do awareness events as I’m able! I used to make support & Awareness jewelry. These days as my illnesses progress, I’m unable to do much of the jewelry creating. But if someone asks, I still try my best to make a few support items. I live with RA & OA as well, making it even more difficult to make my jewelry! I’m also a Chemo-angel, card angel & special assignment angel for the “Chemo-Angels” program!

That is who I am today! These are my words and what I have to say about the new CDC Opioid guidelines and why they’re so wrong. I have had much pain in my life, it continues today as will again tomorrow and for every tomorrow after that! But if my Dr’s are allowed to keep me as comfortable as possible, then why are they being “bullied” from helping me? If an Opioid pill &/or a patch can help me to at least to be more comfortable, then why not?

Many groups of people were totally & blindly left out of the guidelines decision making process! Somehow those who were allowed input on these guidelines, were some physicians,”non”physicians & others who stand to gain monetarily (they are: treatment center owners, Massage therapy office owners, Acupuncture clinic owners & administrators…and others who stand to gain from our losses). Their gains would be my (our) loss of any kind of life outside of a hospital bed in my living room and/or a wheelchair. I’ve been on the same medication regimen for a very long time. I do not need nor want higher doses! I’ve never gotten a “high” from any if it! But being allowed to take my opioid pain meds, gives me the chance to be a grandmother, a mother and a wife for a few hours at a time, some days! Please “Do No Harm”!!

First Name: Suzanne

Last Name: Stewart

For further information about the Regulations.gov commenting process, please visit http://www.regulations.gov/#!faq.

Access To Our Pain Medication Is Being Threatened!

Access To Our Pain Medication Is Being Threatened!



Hello Luvs,
I hope this finds you in better or the same shape after the holidays that have just passed us by once again?  None of us wants to go backwards, right?  If we do happen to tip backwards a little bit or even quite a bit; we must dust ourselves off and get right back at it again! The holidays tend to wear out people in the best of health, let alone, those of us in pain andor with declining health.

This is a very important blog post because I have a few things to tell you, teach you and to remind you about. First of all, I wanted to share with you that I was most humbled when I was made aware that there was an article written about me in “RSD Angel Express Newsletter” about the end of December, 2015..just recently. I will post the article in its entirety for you here after this paragraph. I was surprised, proud, excited and most of all very humbled by the whole experience.  Humbled, because this means that I must continue, not ever give up and do what I have been doing for Pain patient advocacy.

 I think the most honorable, humbling words in the entire article, that actually made me feel so very elated and proud, was where the author, Flora, wrote this “She doesn’t expect anyone to feel sorry for her, because she’s a mountain that won’t just fall over”. That just made me happy because I don’t like to have a fuss made over me. I don’t like the spotlight, unless I’m signing (doing ASL cover songs) a song!  I want to be strong and continue on helping and doing and making changes that are good for all of us.  That is what makes me happiest aside from spending time with my husband and my family.


So that was the item that I wanted to share with you and now I have a few other things on my agenda for this post.  One thing that I wanted to let you know about, inform you of; is that I have 2 (two) fundraisers going right now, to raise money for people with this horribly painful disease that I have, and about 400,000 others in the USA also struggle with:  CRPS or known as “Complex Regional Pain Syndrome”. You can get a lot of information about this disease at a couple of my favorite places:  WWW.RSDS.ORG and my other favorite is WWW.RSDHOPE.ORG.  Both are a large powerhouse of information. They both help new patients, old patients and anyone needing kindness, information and/or advice.  RSDHOPE concentrates largely on spreading awareness and information. That is their main goal and target.  Keith always says that “the money for research and other ways to help us,  will find its way to them at just the time it is needed.”  RSDS is also full of help and education for the patients. Jim Broatch, who is the “father-type” of person, who is very very helpful and kind as well; is pretty much in charge over there (*he is executive VP and Director) at RSDS.  They concentrate on the here and now. They want to help people who need help by having #1, a scholarship program. It is where people who need a certain expensive test and their insurance won’t pay for it, or they need some kind of medication or treatment and they are unable to pay, they can put in to ask for this scholarship and fill out some forms. Then if it is approved by a board of persons who oversee that, then they send the money to the people to help out.  The other thing that I find pretty darned nice, is that they have this “Penny the pig” little orange piggy bank that they will send to anyone who asks, and you fill it up with your pocket change and send it back, or send back the money to them and maybe even fill up the “pig” again? What it does, or what they do with the money from the piggy bank is they put it all together and send kids with CRPS to camp in the Summer! Isn’t that awesome?  They are both pretty special groups, run by pretty special people.  RSDHOPE has a “Mentor” program, of which I am a part.  When someone is newly diagnosed with CRPS, they will assign a Mentor; someone who has had CRPS for a longer time period, and the Mentor will talk to the “newbie” and help however they can whether it be a chat, an email or a smile that they need. So about my 2 fundraisers that will be going until beginning of Summer in 2016, the links to get to them both are going to follow this paragraph.  You can choose which of the two big National and well known organizations to help! It is totally up to you and you will go here to donate to RSDHOPE.org (any amount will do…please?  Really anything is going to be helpful : *click here> Fundraiser for RSDHOPE & money goes to all aspects of helping    *(www.firstgiving.com/fundraiser/Suzanne-stewart/CRPSfundraiser **this one is for RSDHOPE.org) and the 2nd one is for RSDSA.com, and it is here: (www.firstgiving.com/fundraiser/Suzanne-stewart/RSDSAinmemoryoffriends). *click here> Fundraiser for RSDSA & in memory of friends we’ve lost to this illness ….now I’ve given you the direct link or you can click on the blue URL link and it will take you directly to the website! If you can give anything, that would be so great and so very awesome! If you cannot donate, maybe you could use your : webpage, Blogs, Twitter, and/or any other social media to SHARE these fundraisers and help out in that way?

INFORMATION RE: THE CDC & THEIR VIEWS ON OPIOIDS; HOW  TO GET YOUR LETTER TO THEM & WHAT YOU CAN WRITE: *good information please read if you take Opioids, plan to take them or if someone you love is taking them!!

The last but most pressing matter that I wanted to speak with you about is of utmost importance!!! I saved it for last so it would stick in your mind and you would really do this for yourself, for everyone in chronic pain and for the freedom we should enjoy living in the USA! The list of people that this will help, even includes our service men and women who get hurt  and then must live in chronic pain for the rest of their lives, just as those of us with our several different chronic pain diseases; be it RSD/CRPS, Neuropathy, Diabetic Neuropathy, Degenerative Disc Disease, EDS, Chiari Malformation and the list is endless.   So this is what it is my friends, ***WE HAVE ONLY 8 days left to do this task and please, could everyone who is reading this please do this small favor your friends, family and even yourselves; whether you are in pain or not, we need your HELP??

The CDC was going pretty much “behind closed doors” and they got a group of people who don’t have our best interests at heart, but more in their wallets. This group of people decided that “too many people were dying from what they call “Opioid abuse” (even though they wouldn’t be stopping the culprits, the so called “addicts” or the illegal “pill sellers and pill poppers” ) they want to STOP allowing those of us living with chronic pain to have  access to Opioid pain medication. They believe we should try things like: diet, exercise, Psychiatry, Nutrionists, Acupuncture, massage, biofeedback and their “treatments centers”!  YES, I did put “their” treatments centers in there. It was not a mistake !  You see, the health advocates and others found out that this group of people who the CDC got to make this very important decision could hurt and has the potential to “kill” people living with daily chronic pain!!  They could do this  by taking away all access to Opioids for “all non malignant pain and allow it only for cases of malignant pain”!  Well, after a snap decision was made by this group of random people (and not including any chronic pain patients themselves), a decision that was made in secret and behind closed doors in a quick manner, to stop the prescribing of Opioids for any chronic pain patients.  This means that the woman (similar to me) who has been on them at a bit of a higher dose for the length of 15 + years, could die because the next time she takes her script to the pharmacy, they could and will deny her the medicine her body has become tolerant or dependent on.  She is not an “ADDICT”! The percentage of people with chronic pain issues who actually become addicts is very very low, at only about 5%! This woman could die!  Or the man who has served our country and lost his limb; and he has “phantom limb pain”, could commit suicide because he will now have no access to his pain meds, that were maybe prescribed to him by his GP, due to money problems?  Maybe he cannot afford to go to a specialist?  These are hypothetical situations and let’s hope this never happens!

We don’t want this to happen! I just cannot believe that they did this with a group of people who could and will benefit from our lack of real care.  We found out that several of the people that made the snap decision to “start this war against the chronic pain patients” stood to gain from our loss of life and/or quality of life!  Some of them owned treatment centers, acupuncture clinics, & massage studio’s!!  Some others were to gain from the use of more Spinal cord Stimulators & Pain Pumps.  It’s  ludicrous that they  have our lives on the line so that they could make a few pennies! It is awful to think that Dr.’s could be forcing people to have surgery, sometimes very risky surgery to their spine; because they will be unable to take a “pill” for their chronic pain!!  Well, not really “unable” but not allowed by law!

So this is what we need to do! Please write to your Governors, your state representatives  and tell them what is happening! But first, please write to the CDC BEFORE  JAN 13th! On the 13th of January at midnight, the CDC will stop taking our comments about this. I will put all of the information at the end of this writing. But you need to tell them in your own words, what is wrong with you or what your chronic pain is all about!  Tell them what you used to do for work and what you can and cannot do now due to pain. Tell them in your words what this would mean to you if they took your medications away from you ! Something that has possibly been helping you for years and then suddenly you could not get it What would happen to you Be passionate but direct. Do not be nasty or degrading and do not use cuss words please.  Be. Classy & truthful but plead your/our cause!  Write your letter in Word and make sure you have word count on because you are allowed only 5,000 characters! Please make sure that you write at the top of your plea, the “DOCKET # which is: CDC-2015-0112-0001”.

Go to this website for the CDC:  you can copy and paste right from Word if you would like, or you can write directly in the box for comments on the website because it also has a count for words on it. It lets you know when you are getting close to the 5,000 limit. Remember to tell them what you used to do, what you can do now and how the medications help you. Make sure you add if /where you volunteer or if you are doing so online or in a place outside of your home. Some diseases are not recognized by the CDC,  and one of those is CRPS/RSD. If you have this, then please discuss the McGill pain scale and how CRPS is at 43 on this national pain scale! I would tell them that the Federal Government recognizes CRPS/RSD as a “Disability” by SSDI standards now days! You may want to list the National Institute of Healths’ definition for your illness. For CRPS/RSD, that is this:

“Complex regional pain syndrome “CRPS”is a chronic pain condition most often affecting one of the limbs, usually after an injury or trauma to that limb.  CRPS is believed to be caused by damage to or  malfunction of , the peripheral and central nervous systems.  The central nervous system is composed of the brain and spinal cord, and the peripheral nervous system involves nerve signaling from the brain and spinal cord to the rest of the body.  CRPS is characterized by prolonged or excessive pain and mild or dramatic changes in skin color, temperature, and/or swelling in the affected area.

There are two similar forms, called CRPS-1 and CRPS-2, with the same symptoms and treatments.  CRPS-II (previously called Causalgia) is the term used for patients with confirmed nerve injuries.  Individuals without confirmed nerve injury are classified as having CRPS-1 (previously called Reflex Sympathetic Dystrophy Syndrome) .  Some research has identified evidence of nerve injury in CRPS-1, so the validity of the two different forms is being investigated.

CRPS symptoms vary in severity and duration.  Studies of the incidence and prevalence of the disease show that most cases are mild and individuals recover gradually with time.  In more severe cases, individuals may not recover and may have long term disability.”

OK, so now that I’ve given you the tools, please go to this CDC website and start writing to help your cause and our cause and the cause!  Don’t forget, if you are not suffering, maybe someone you love is suffering! Do this for them, please!  Go to:*Click here >> The CDC Guidelines “OPEN COMMENTS” page   <<…write your comments and please do NOT forget to add the Docket # at the top of your comments or they won’t accept it!  Again, the Docket # is:  DOCKET #CDC-2015-0112. …if you are someone or know someone who needs to write to the CDC to help this Cause, because you do not have a computer, then you can write your comments to:  National Center for Injury Prevention and Control, Centers for Disease Control and Prevention….DOCKET #CDC – 2015 -0112……. 4770 Buford Highway N.E., Mail stop F-63, Atlanta, GA. 30341

I hope you will do this for yourself, for someone that you love who is too sick to do this for themselves!!! I pray that we will be able to be a force to be reckoned with!  Let them know in a strong but kind enough way that we will not sit idly by and let our lives go to dust! I am a grandmother of 2 and one more on the way in June ’16.  I’m a wife for almost 20 years and I want to live! Chronic pain can kill you if it is not put under control. It can cause a ripple effect of more medical issues!  There will be more suicides and deaths if they succeed in what they are trying to do to us.  I cannot even believe that we are at an issue over taking a pill for pain.  Something that was developed many years ago and found to be helpful for people living with chronic daily pain!  There’s a huge difference between a chronic pain patient and a drug addict!  So let’s show them that we will stick together and help ourselves and each other!

Much of the statistical information was found at the Pain News Network and their daily columns. There were other information sources that were found on the Internet and at a Facebook CDC info page ( at:  https://www.facebook.com/events/1099948746690760), also I got some info from the National Pain Report newsletters. The NIH definitions etc were found at the NIH website. *Some of the above is my own personal opinion and I am not a medical personnel; but I have been a health advocate for 12 years now, since 2007.

I would like to share one more thing with you. The CDC was ready to implement these limitations on us, until. They were threatened with a lawsuit. The Dr’s who were on the panel which decided that pain patients could no longer have the medications that we need, are called “PROP” or Physicians for Responsible Opioid Prescribing (they are not for the Responsible prescribing of Opioids, in my opinion.  They are “AGAINST” THE PRESCRIBING OF ANY OPIOIDS FOR ANY KIND OF NON-MALIGNANT PAIN!).