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

WEGO Health 2018 Awards


I am very excited to inform you that I have been nominated for two WEGO Health Awards in the 2018 WEGO Health Awards season. The two areas in which I’ve been nominated are: “Best In Show Blog” (for this Blog “Tears of Truth”) and also for “Best In Show Facebook” for my many facebook groups:

  • (International CRPS Support group, RASE for CRPS (research,awareness,support and education)
  • Dysautonomia Support Network
  • Michigan/Midwest & friends
  • Chronic Pain Support Group
  • Deaf/Hard of Hearing and Living with Chronic Pain
  • People In Pain Unite
  • ASL Song and ASLSuzyQ (these last two are ASL, or American Sign Language groups).

Also for my Facebook Pages:

  • RASE for CRPS,
  • RASE for Invisible Diseases,
  • Dysautonomia Network,
  • Association for Ethical treatment of Pain Patients (AETOPP),
  • People In Pain Unite,
  • Gone But Not Forgotten Friends and Family
  • ASLSuzyQ)

WEGO Healt is a mission-driven company connecting healthcare with the experience, skills and insights of the patient leaders.  They are the worlds largest network of patient leaders, working across  virtualy all health conditions and topics. click here to learn more about their Patient Leader Network.

The WEGO Health Awards  were created to celebrate those who tirelessly support the mission of WEGO Health to empower the patient voice.  With 16 award categories, the WEGO Health awards are the only awards across all conditions and platforms, that recognize the over 100 thousand inspiring Patient Leaders who raise awareness, share information and support their communities but often without recognition.

I want to thank those who nominated me and thought enough of my advocacy/awareness work to think of me for these awards. It means so much to be nominated because though I don’t do what I do in order to get anything from it; I appreciate being recognized for the work that I do. It means that the work that I do voluntarily to help the several communities that I am involved with, is not going unnoticed. Thank you so much for that.

I feel that I deserve the “Best in Show Blog” award because my blog, ‘Tears of Truth”, has become a large network and a plethora of information for patients who live with various illnesses that especially cause chronic pain. There are many resources and so much information here to address patients with various needs. I feel that I also deserve the “Best in Show Facebook” because I serve several different patient communities who live with chronic pain from various illnesses. I have created 6 chronic pain support groups and 2 ASL groups that support Deaf/Hard of Hearing community (including myself, as I am HoH). I try very hard to work closely with several different non-profits and I do not ask for anything in return. These awards, even just being nominated gives me that feeling of being appreciated.

This year, the 16 WEGO Health Award winners will be honored at an in-person celebration in Octoer, co-hosted by the Society of Participator Medicine at the Connected Health Conference. It is very important to me and I would really love to attentd this event to collaborate with industry leaders. Also, I would truly love to meet all of the people who I’ve been working with and talking with all of these years, since 2010 or so, when I first became a WEGO Patient Leader.

I’m now looking toward YOU, my incredibly supportive network to help endorse me for these two awards.  There are two easy ways to endorse me, (*Wordpress does not allow me to put a badge on this blog. Therefore the link is on the column to the upper right side of this blog (on a computer)…or you can easily choose the method below)….that will only take seconds of  your time, I promise! (I would love to be endorsed in both categories because they are equally important.

If I have ever supported you, made you laugh, given you inspiration  or cheered you on to keep fighting – please consider taking just a few seconds to endorse me for these awards. Thank you in advance, from my heart.

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About suboxone, buprenorphine and naloxone


The current Opioid Hysteria was started several years ago with a rippling effect and has become worse over time. A company that has much to gain from this hysteria around opioids is called Reckitt Benckiser. According to this article in “The Daily Beast” from 10-05-16 : https://www.thedailybeast.com/suboxone-creators-shocking-scheme-to-profit-off-of-heroin-addicts , the company was about to lose their patent and came up with a “fake opioid hysteria”.  According to this article, “Reckitt Benckiser sought to exploit the nationwide hysteria over the increasing use of opioids to line its own pockets by blocking competition….”.

The drug Suboxone has a Generic name of buprenorphine and naloxone (oral/sublingual). If you visit https://www.drugs.com/suboxone.html you will notice that Bupenorphine is  also considered an “opioid medication, sometimes called a narcotic”.  Naloxone “blocks the effects of opioid medications”. Naloxone also blocks any pain relief or feelings of well-being, according to this article. The drug, “Suboxone is used to treat narcotic (opiate) addiction”. Suboxone is not to be used for any kind of pain relief or as a pain relieving medication. What I don’t understand are the warnings on Suboxone and these medications associated with it in generic form. The same warning is used on the label as is used for many opioids. The warnings state that if you used Suboxone, Bupenorphrine  and/or Naloxone it may be “habit-forming” and can cause addiction, overdose or even death. The company Reckitt Benckiser is trying to get rid of all other opioids so that they can profit off of having a monopoly on their own medications. They claim that all chronic pain patients are suffering from “opioid use disorder” or addiction, in other items that I have read.  Other warnings on the labels of these 3 drugs, state that  some other medications, if taken simultaneously with Suboxone, Bupenorphrine and/or Naloxone, can cause a serious medical crisis called “Serotonin syndrome”. They state that you should be warned and inform your Dr. If you take any herbal supplements, depression medications (*or if. You have any mental illness), Parkinson’s disease, migraines, serious infections or any medication that helps stop nausea/vomiting. The label states that these medications can cause “life threatening withdrawal symptoms”. Some of the side effects are: weak/shallow breathing, confusion, weakness, blurred vision, slurred speech, liver problems, low cortisol levels (nausea, vomiting, loss of appetite etc).  One of the most interesting side effects listed are “opioid withdrawal symptoms” (shivering, increased sweating, runny nose, watery eyes, muscle pain and diarrhea). Tell me again, why this medicine is “better” for chronic pain patients to take than long acting or really any opioids? How are these side effects and warnings any better? Also, as long as a chronic pain patient has been doing well on long term opioid therapy, why switch to something that could be potentially harmful or cause them death? Also, women or men who are still thinking about having or starting a family, do you know that Suboxone can cause infertility (*this article states that long term opioid use can also cause infertility?).  Many other medications will affect Suboxone, such as Benzodiazephines, other narcotic medications & cough medicine. It states that Suboxone is used to treat drug/opioid addiction. It does not say that it is for chronic pain in any way, shape or form.

Don’t let anyone tell you that buprenorphine is “different from suboxone” because from my research it is just a generic form of that drug. It is an opioid but has not yet been approved for use with chronic pain. Dr’s are required to take an 8 hour class in order to prescribe these drugs to patients. They are supposed to be prescribed for addiction and/or substance use disorder. The latter is what our friend, Andrew Kolodny has labeled all chronic pain patients who use opioid therapy, as having. When I looked up the classes online, that physicians, nurse practitioners etc. are required to take in order to prescribe the drug “buprenorphine”; it states this is a  medication for addiction and opioid use disorder. Physicians must apply for a waiver to prescribe bupreorpnine to their patients with opioid use disorders.

I noticed an article last week that was discussing suboxone, that it is only approved for addiction. The active ingredient in this drug is Called buprenorphine, which is known as an “opioid partial agonist”. This just means that it interacts with the same receptors in the brain, as heroin and oxycodone. The difference they explain, is that people don’t get a “high” or “cravings” for buprenorphine. But then why can’t chronic pain patients who have been doing well on opioid therapy for several or many years be left to the opioid medications that they may have been doing well on for many years? Patients who have been on a steady dose of opioids for possibly multiple chronic pain conditions, do not get cravings or high either? Why introduce these chronically ill people to something new, something else that will cause them new and or worse bad reactions/side effects?  I found in this article (www.crchealth.com/addiction/heroin-addiction-treatment/heroin-detox/buprenorphine-suboxone-vs/) that suboxone  contains buprenorphrine and naloxone. The naloxone keeps people from abusing the drug. It is an opiate antagonist. But why would anyone give these meds to chronic pain patients who do not use the opioids for any other reason than to have some semblance of a life with lesser pain levels? It states right in this last article above, that “If you take suboxone as directed…..the buprenorphrine will travel to the brain and you will feel relief from withdrawal symptoms. Chronic pain patients should not have to go through withdrawal symptoms. This is what I’m trying to get through to persons who are “pushing” these drugs on the chronic pain population now.

In this article called “The truth about suboxone” (www.thefix.com/content/stigma-maintenance-treatment9216), Maia Szalavitz discusses maintenance therapy for addiction with suboxone, Methadone or Naltrexone. She explains something that I’ve known to be true about opioids as well. If they are taken in irregular time and dosage then you will get a high. But if you take them in a regular reliable schedule and dosage, then “getting high is visually impossible”. Next, I read an article about different people who had been given the “bupenorphrine isn’t suboxone” speech. They were told that it would help them with withdrawals etc. But guess what? The person who told his story first, in this article, stated that withdrawals from the buprenorphrine were much worse than anything he had expected, encountered or had been told. I read his story here: (https://www.medhelp.org/posts/Addiction-Substance-Abuse/Suboxone-Good–Bad–and-Ugly-Truth—168-days-off-SUB/show/1502381) . I have been researching these drugs.  In my humble opinion as a non-medical personnel, who has been through hell and back; trying different pain treatments and medications over the past 15 years; that I would not ever take suboxone, or buprenorphrine even if my life depended on it! I finally found something that worked to lessen the chronic pain due to several chronic pain illnesses; I agreed to take it after being pressured “to trust them”(doctors). But now only to have it taken away 15 years later because of some crazy opioid hysteria going on so that “he who shall not be named” can become more rich and have a monopoly on suboxone, bupenorphrine etc. by “getting rid of all opioids”.

We live in America and we should be free to have choices as to what medications we want to take, knowing the risks and benefits. Just as we have freedom of speech, freedom to bear arms and now even freedom to have gender neutral restrooms! We deserve the right to have freedom to choose with our own personal physicians who are trained in pain management etc; the right to take the best medications for our own personal situations. The government needs to step away and stop trying to politicize this opioid hysteria. Stop trying to demonize the organizations that support our freedoms of treatment options! This has turned into a deadly nightmare for many of us and now myself included.

***P.S.

I also want to inform you that each time I tried to look up or research “buprenorphrine” it came up as “suboxone”. Buprenorphrine is a generic form of suboxone. In addition, naloxone is the ingredient that immediately makes you go through withdrawals if you do take another opioid/narcotic while taking suboxone. Hmmm….suppose you were in a car accident, maybe like the one that started all of your chronic pain in the first place? Suppose the EMT’s or an ER Doctor gave you an opioid to help with burn trauma or gunshot trauma wounds or horrible car accident trauma? You would be really “in trouble” would you not? Anyways, just another informative message from me to you. I hope this helps someone. Sending Love and low pain your way.

*************************************

This is where I got some of this information:

1. https://www..com/suboxone-creators-shocking-scheme-to-profit-off-of-heroin-addicts

2. https://www.drugs.com/suboxone.html

Articles that Explain The Bad effects of suboxone, bupenorphrine etc.

1.  Why Suboxone Treatment Can Be Harmful

2. The Suboxone Conspiracy

3. the ugly truth about suboxone withdrawals

*****Several of the articles used in this blog post were provided to me by my colleague & friend, Jonelle Elgaway *** please visit her website at: CAW Nation

Fighting For Chronic Pain Patients


This is the “Roy Green” syndicated radio show that is heard in Canada & the USA each week. I was contacted by Roy a few days ago and asked to come on the air and speak with him regarding the dire situation that chronic pain patients are living and dealing with these days. I also spoke of how I was informed that I’m losing my own ER/LA pain meds in 2 weeks. The starting point of my segment Is at 39:12 through 54:15. Please feel free to share this with our pain community. Thank you!

Suzanne Stewart on the Roy Green Show, Fighting For Chronic Pain Patients

Keeping Hope Alive is Tough!


You never think it will happen to you, until it does. I have been helping others and advocating for them for many years now. I have been writing for the National Pain Report and in my own blog (tearsoftruth.com) for several years as well. I try to give advice to others to help keep their hope alive. On my WEGO Health profile, my favorite words are posted. These are words that I try to live by and a phrase that originated with me, “Hope is a verb, You have to DO something in order to have it”. Now I have to practice what I have been preaching.

I think most of you know that in March 2018, I visited my pain Dr. And he did the usual random urine test. I was told in April that it showed a positive for PCP and something else, I cant even think of right now? Probably because I have no idea what these are and did not ever take them. It ended up being a “false positive” after we were charge $300.00, because HE forgot that I was taking a migraine medication that did not show up on the MAPS. He says it shows up sometimes, not others?

My PTSD symptoms have gotten worse prior to each upcoming pain Dr. visit. He has become less respectful towards me. I used to feel a mutual respect between us. I stopped taking some other cancer pain medication that was prescribed to me before I started seeing him in 2015. I felt that he respected me for being able to do that and go through the withdrawals process. My brain did not ever care about the medication, but my body got very sick when I stopped it.

The past few appointments I have not felt that respect that I had felt in the past. My Dr. was treating me differently. He got angry if I got weepy at all and he yelled at me for crying. Something changed in him and I could see it and feel it, but I was not sure what it was or why it was happening? This week I went to my appointment on Monday, 7-9-18. Things were pretty “normal” during the visit, but he was kind of “short” and “quick” with me, when he used to chit chat a bit and even smile when he told me about his children. At the end of the visit, he said this to me “so we are stopping your Fentanyl patch”. I was stunned because I’ve been on it for 15 yrs and taking less now than I was in 2015. I’ve had some semblance of a life with my husband, kids and grandchildren. I’ve been doing quite well and now he was taking away something that I’ve been doing very well with. Then came the “big lie”; (*which I know is untrue because I asked my Neurologist and Cardiologist and I was told it was not true whatsoever). He told me that I was “probably not getting more than 30% of the medication anyways because I’m not “fat” or “heavy enough”. That the fentanyl patch works better on “fat/heavy people” or “people with more body fat than I have”.” I questioned him, but I knew enough not to question him too much. I did not want to make the person that I depend on to have some kind of life at all, angry with me. My husband brought the empty bottle of my Migraine medicine to show him that I did have an 8 month old script and recently got a new refill. It was not showing up in the MAPS and my husband asked him if we should ask the pharmacy to make sure it is in that system? He told us that “they don’t like if you know too much, its best not to say anything”. What the heck is that all about? We are supposed to be lambs/sheep and follow orders and jump off the cliff if told to do so, without ever asking any questions? I’ve always found it better to be knowledgeable in my own treatment and healthcare. But this is not the case today, I guess?

Lastly, I put myself into old “abuse mode”. It was the same as the “old days” and I put myself in another place, disassociated until we could get the hell out of that room. All I wanted to do is cry and be hysterical for a few moments with the one person who loves me and who protects me to the best of his abilities and who is my soul-mate, my husband. I heard him tell me that he was taking away my patch and that I could take a different extended release medication “MS Contin”. But, I told him that I am unable to take that medication because I have Gastroparesis and even before I was diagnosed with GP, I could not take that medication because it made me sick, violently ill. That was the only choice I had and he gave me “one more month to be psychologically ready” but my dose was lowered and spread out for another full day. In one month I will be taken off of my patch after 15 years, with no tapering and nothing that matches the strength and pain lowering levels of what has worked for me for so long.

We are now at the mercy of the government in our patient rooms. He says that the state and federal government are making him do this to me. But there is no “law” that I can find in Michigan yet, stating that all persons taking Fentanyl for chronic pain must be removed from taking it now. I’m sorry that I don’t believe that you must be “heavy person” in order for the Fentanyl to work, because I was pretty much anorexic when I started it and it’s always worked for my pain. I have never had a “high” or any feelings except some relief from the pain of the several high pain illnesses that I live with and have lived with for many years. He also told me that “only those who have cancer are allowed to have these fentanyl patches now”. There is no evidence to prove that cancer pain is any worse than the pain that many of the chronic pain patients have to endure. I know there is a NORD website quote or a quote from the AMA, regarding this but I’m too sick right now to try and find it for you, I apologize. It’s easy to give advice, hope and love to people going through this, but when it is YOU who is going through it, all the love, advice and hope won’t make it better.

The same day that this happened, I awoke at 4:00 am with a feeling like someone was pressing on my left eye. When I opened my eyes, I could not see out of my left eye at all. It was totally pitch black. After a few minutes of screaming hysterically and my husband rushing to my side, I started to see patches of light in a dark mass. Then patches of the living room came into focus. After about 5-10 minutes, I could see again but not as sharp as usual with my glasses on. I went to sleep and in the morning I had a dull ache in my left eye and went to the hospital’s eye clinic that day. The Dr. Said that I had a “mini stroke” or “TIA of the eye”. My blood pressure had been high at the pain Dr. Appointment and my heart rate was 100 bpm before he even came into the room to tell me the news. He told me it was probably from stress and nothing they could do for me after all of the special testing that they did, they sent me home. I visited my heart specialist the next day and filled him in. He concurred with the eye clinic and said it could even have been an Ocular Migraine, but either/or both are from stress and can be a dangerous precursor to a stroke. I had a CVA or stroke in 2006, so I’ve been there and done that already. Today, we are like lambs going off to slaughter and nobody cares if we live or die. As my kind-hearted specialist physician of 15 years told me yesterday, “unfortunately you and people like you are collateral damage to the hysteria taking place right now”. I guess now it is up to me to see if I am able to follow any of the advice that I’ve been giving to others in this same predicament? Will I have another heart attack or another stroke because the legislators don’t care about me as an individual? Will I live to see my granddaughters and new grandson’s lives evolve or will I be a statistic? I guess only time will tell and all I can do is try to “keep hope alive”.

Giving PAIN To Help With Pain?


I read this article called “How to Ease pain without Opioids? Specialists are finding Ways” by Steve Dorfman from Palm Beach Post, a staff writer. He is writing about a clinic that opened in Florida. We all know that Florida is the very worst or one of the worst states to be living with chronic pain and residing in. Does this make any sense at all to the chronic pain patients or any sane individual? The interventions that are being outlined in this article are tortuous to say the least! 

This Dr. Tapia outlines several different approaches to use instead of narcotics or opioids. Why aren’t sick people who are legitimately living with daily chronic pain, allowed to take a pill like everyone else who is really sick? It has NOT been proven that cancer pain is worse than any other form of chronic pain. The CDC rebuked Andrew Kolodny when he tried to use that line on them. It just is not true. I have two family members with cancer and they told me themselves that their pain is “not that bad” and definitely not as bad as many other chronic pain illnesses. At least with most other illnesses there is an end in sight or a treatment that helps but now the chronic pain population are being forced to do painful, torturous and just plain “stupid” things that are supposed to “trick our minds into believing that we feel better”. That is my opinion!

First of all, people who live with daily intractable pain, do not get high, do not abuse their pain medications and do not do anything they should not do with their medications. They use them for pain relief only! The chronic pain population should not be made to continually suffer and die because there are “bad” people who brought “bad” drugs like cara fentanyl over from South America and elsewhere! This is insane! If someone starts abusing insulin to lose weight and then people die, will they start taking insulin away from the Diabetics in America? Guess what? I bet you that won’t ever happen!

This Dr.  In Florida has several approaches.  He and other pain Dr’s who are now “afraid” to prescribe medication that can easily help their patients without giving them more pain on top of the chronic pain they are enduring; are calling this “Interventional Pain medicine”.  They are doing some things like this:  more injections (that sounds fun), nerve blocks (yep they hurt worse and then maybe help for a month, but guess what?? You cannot do that forever!!!), and what they like to call “minimally invasive outpatient surgeries.  This is ludicrous and crazy!

There is this method they are doing where they take your red blood cells out (ouch) and they “spin them around in a special centrifuge machine that separates and concentrates platelets and growth factors, and then it is injected” …get this…this is the “good part”…”they INJECT IT INTO THE PAINFUL AREAS!” That sounds like something I want to try, with systemic  CRPS….NOT… I’ve heard that this may help some forms of Arthritis! But what about all of the other horribly painful illnesses Like Arachnoiditis, CRPS, EDS and many others??? Then there is a high intensity laser therapy “believed by some to promote tissue healing”….yea…sorry…load of crap!  They also have this recently cleared by the FDA device called NIP procedure (NIP stands for noninvasive pain). They use a microchip and acupuncture needles, placed “strategically behind the patients ear”.  This technology transmits a flow of signals to the patient for as long as they are “wearing” the device (usually 4 or 5 days). Well, Ok but what about the rest of your life after 4 or 5 days??

I am talking about intractable pain, chronic pain and pain that will most likely never disappear. These kinds of treatments are asinine for these kinds of chronic pain patients. I’m sorry but taking a pill a couple times a day, that has absolutely no side effects and does not harm me in any way, is a much easier approach for those already living with daily struggles of constant pain that will not eventually disappear.  These “pain interventionists” are just making a lot of money and taking advantage of the chronic pain population. I’m sorry but you cannot just “think this kind of pain away”. You cannot wear a couple of needles behind your ear and watch it “Poof” away! These are insane ideas from an insane culture who are being hysterical about opioids. Opioids have a place in the chronic and acute pain world.  We need palliative of life care. We aren’t going to live as long as the “normal” person anyways. I am not an addict. I am NOT afraid of losing my pain meds, I’m more afraid of feeling the pain when it is not controlled!

My specialist physician told me the other day that “unfortunately, I am collateral damage to the hysteria that is taking place in our society today”. He’s 100% correct and I will probably not live through this again. I lost my physician 3 years ago. One day he was there and he was my Dr. For about 15 yrs. The next day he was gone without an explanation. I was caught going off meds for pain after 12 years “cold turkey”. I was very sick and my blood pressure went high, my blood sugar went high and it was torturous. Last Monday, I was told that my 100 fentanyl patch was being taken away. No tapering, just “one more month to help me get ready psychologically”. What the heck is that about? The safe way is to wean someone 10% every couple of weeks or so. On August 10th I will not be given the patch again. I was offered some other oral extended relief medication but I have Gastroparesis. In what lifetime doesn’t a pain Dr. Or any Dr.  know that Oral opioids, especially extended ones, are not recommended for people who live with Gastroparesis (another painful condition)?? No one cares? I’ve written to my Senator, the president, my state rep and I’ve made videos and blog posts and news articles. Nobody cares about us anymore. Nobody cares about my life or my quality of life any longer? What happened to these United States of America? 

(My information is from http://www.palmbeachpost.com May 21st, 2018 *Please go over there and post comments about your feelings regarding this insanity)

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….

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

Becoming Incurable Crowdfunding Video