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)

Dear Senator


Hello Luvs,

Below is a copy of a letter that I’m sending to my Senator and possibly to a few other legislators. Of course, I will change it up a bit for the others.

Please give me any constructive feedback or ideas to add to the letter that I’ve written. Be kind and let me know what you think? Thank you so much! I appreciate it.

I have the letter that I got back from the Senator, in response to my first letter to her almost a year ago! So here’s my letter to her, straight out of my email draft! Thank you again.

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

Dear Senator Stabinaw,

Thank you for your response to my 1st letter. Although I think it must have been a response to someone else’s letter to you? My letter was addressing the 26 million intractable chronic pain patients who now find themselves cut off from any kind of opioid pain relief therapy. There is a place for opioids, when many other methods of pain relief have been tried and failed for one reason or another. The opioid “crisis” has truly zero to 1% to do with chronic pain patients and has much more to do with the illegal fentanyl and Cara-fentanyl brought over to the US from China etc.

I was asking you to help the chronic intractable pain patients in our state and in the USA. They are being forgotten in all of this. The government needs to stay out of the Dr. /patient relationships & exam rooms. That’s a wonderful thing to stop drug abuse and substance abuse disorder. But not at the expense, loss and inhumane treatment of the chronic intractable pain patients lives.

The chronic pain community is seeing a rise in suicides with the gross reduction in opioid prescribing. We had another fatality just this week (April 2018), I will include a link to that story with this letter. A young mother who loved her 11 year old boy and her husband, was ill before & during every pain Dr. visit (due to anxiety/fear of upcoming appointment), most recently especially.

Patients are experiencing PTSD symptoms as they await the cut off and/or tapering of their safe and effective, long term opioid pain medications. These persons are not afraid of losing the opioid pain meds. They’re afraid of living with the excruciating & horrible intractable pain on a daily basis for the resting their lives.

Please help these patients by also alleviating the fear of career loss or even jail time; for the Drs who prescribe these medications. The pain specialist goes to school for sometimes 15 years, to learn how to treat these patients. But now, legislators are taking over this “specialist” role. If you’d like to sit down with me, hear my story etc; I’d be more than happy to come. I’d love the opportunity to speak with you and anyone else who can help the chronic intractable pain patients in Michigan & the USA.

Thank you for your time. I’ve enclosed the links to a couple of stories on YouTube , the Pain News Network & the National Pain Report.

1. https://youtu.be/u4vHSLeTe-s

2. https://www.acsh.org/news/2017/10/12/opioid-epidemic-6-charts-designed-deceive-you-11935

3.https://www.painnewsnetwork.org/stories/2018/4/30/death-of-pain-patient-blamed-on-dea#.Wuf0unJ0GX8.twitter=

4. https://.com/2017/12/14/pain-acceptance-the-newest-lie/

Peace & Hope,

Suzanne B. Stewart

about.me/suzydukettes

U.S. Pain Fdn. Ambassador/Advocate/Board Member, Recipient of Pain Ambassador of the Year Award‘16, Mentor for CRPS patients RSDSA, Staff Columnist/Ntl. Pain Report, Blog-“Tears Of Truth” @tearsoftruth.com, Patient leader WEGO Health, HoH/ASL

DISCLAIMER: The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. We do not recommend the self-management of health problems. We can not and do not give you medical advice. The information in this e mail should not be considered complete. Information obtained in this e mail is not exhaustive and does not cover all diseases, ailments, physical conditions or their treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read in this e mail. If you think you may have a medical emergency, call your doctor or 911 immediately. US Pain Foundation inc. does not represent to be an authority but is just helping pass information from other organizations, advocates and or websites.

On Jan 30, 2018, at 5:36 PM, Senator Debbie Stabenow <senator@stabenow.senate.gov> wrote:

Dear Suzanne,

Thank you for contacting me about the treatment and prevention of drug addiction. I share your support for strengthening programs that help individuals overcome addiction and lead healthy and productive lives.

That is why I cosponsored the Comprehensive Addiction Recovery Act (CARA), which was signed into law on July 22, 2016. CARA expands and strengthens substance abuse prevention, education, treatment, and monitoring programs around the country.

Substance abuse and addiction have devastating physical and mental consequences for millions of Americans. Drug abuse has increased dramatically nationwide, and in Michigan, the drug overdose death rate is above the national average. That is why I fought for passage of a demonstration project based on my bipartisan bill, the Excellence in Mental Health Act, which will expand access to mental health and substance abuse services in the community and ensure that more people can get the quality care that they need. I have also fought to strengthen substance abuse prevention and treatment through the efforts of the Substance Abuse and Mental Health Services Administration and the National Institute on Alcohol Abuse and Alcoholism.

Thank you again for contacting me. Please continue to keep me informed about issues of concern to you and your family.

Sincerely,

Debbie Stabenow

United States Senator

U.S. Senator Debbie Stabenow

The United States Senate •Washington, DC 20510

stabenow.senate.gov

Conspiracies Against Wellness Radio Broadcast


Hello Luvs,

I was recently a guest on a radio show, “Conspiracies Against Wellness “. I was interviewed by Jonelle Elgaway and I spoke about the Opioid crisis. Please listen and answer my “call to action” plea at the end.

Please feel free to share this. I encourage you to share it so as many people as possible will learn about all that the chronic pain community is going through.

Here’s the link:

Thank you!

https://youtu.be/N8cBhUStCnA

We ARE In The Room



If you visit the Emergency rooms in Michigan, you see and feel many horror stories.  I don’t visit the ER and have not since 2007, when I was diagnosed with CRPS.  I had chronic pain even before that, from several chronic pain issues and illnesses stemming from a car accident and other reasons. But the last time that I went, I was treated like a pariah because I was taking pain medication.  They never asked me about all of the different therapies and non-Opioid medications that I’ve tried.  They don’t know all that I’ve been through.  They also don’t even ask me if I’ve ever been addicted to anything in my life.  The answer would be “NO”. I’ve never smoked anything and I don’t even drink “once in awhile” socially, not ever!  Yet, the Dr.’s and nurses treat people that take small amounts of pain meds as if we are someone to be scorned.  The amount has gone down but it’s not ever going up.  It works for me and for about 25% of the chronic pain population. Only 1% of  legitimate chronic pain patients ever become addicted to pain medications given to them by a pain management physician.  For some people this is what works after numerous other medications and therapies have failed.

I want to share with you just an overview of something I read in a Detroit Newspaper article yesterday (Link to Detroit news article  .  This is what is happening in Michigan in 2017. I’m praying for change and I’m going to advocate to help the legitimate chronic pain patients. I have already written to and gotten a response from the other letter that I wrote to the White House and Governor Chris Christie.  All that I got in return was a fancy form letter from “The White House”.   I can’t give up.  I refuse to give up hope, without hope, we have nothing left.  We must not give up and we need to keep hope alive.

This is just the summary of what actually happened to a family in Michigan.  I read in our Detroit, MI newspaper recently, and it is just a summary:   “Over on a gurney, a woman screams out writhing from pain. A Dr. stands idly by, just watching a monitor. He stood away from her as she was doubled up in pain, screaming about pain in her abdomen.  Her husband walked in and saw this and he new about his wife’s chronic pain condition(s), but had never seen anything like this from her.  The Dr. was expressionless, as if she was not even in the room and as though she was a non-feeling “thing”, a non-being person with feelings and a soul”. Imagine if it was his wife, his mother or child? Would he still feel the same?

So moving on, …”as the husband approached this so called “Dr.”,  the physician was startled and reached out his hand to introduce himself. He said to the husband, “yes she’s “complaining” about pain. He said “we will “try” to address it. Next, he said something horrifying, but not new to our American chronic pain communities.  He said “addicts often come to the emergency room looking for opioids”.  The woman’s husband knew about her medical condition and he knew enough to realize that something must’ve gone terribly wrong after the nerve block procedure she’d had done earlier that day, while he was at work.  They’d been to Cleveland and Mayo clinics and even to the U of MI hospital. This poor woman had gone through numerous medical procedures and attempted over 40 medications. They finally had found a regimen that worked to relieve enough of her pain so that she had some semblance of a life now and then. The only effective regimen was very complicated but it included Opioids”.  The way she was treated just recently, in 2017 is barbaric to say the least.

This is happening not only here in Michigan, but all over the USA.  Just today, 9-17-17, I read an article that was sent to me through my email. The article written by Julie Mack in “MLive”, discusses many statistics about Michigan deaths from “overdose of Opioids, including Heroin”. Opioids for legitimate and suffering chronic pain patients and Heroin, should not even be compared in the same sentence; let alone included together in the same article showing numbers of deaths.  The article even states that “these numbers are based on death certificates and list only deaths that specify “Opioid and/or heroin” as a factor”.  I want people to see the difference here. Legitimate chronic pain patients who’ve been doing well, taking opioids, after trying many other methods to relieve their pain; are not even in the same same category as heroin addicts.  Unfortunately, from the death certificate, they just lump everyone into one category and that’s hurting the pain patients.  We are suffering due to the ignorance of certain Government officials and the paralyzing fear that has been put into our legitimate and caring Pain management physicians.

In Michigan, a bill was recently introduced into the House of Rep.  This HB 4601 would put absolute limits on the dosages that chronic pain patients may receive. The patient’s medical history, illness(es) or lack of any proof of abuse or addiction are suddenly irrelevant. The Government would be mandating that “no doctor may prescribe opioids to a chronic pain patient exceeding 100 morphine milligram equivalents per day.” No matter what! Oh my goodness, everyone’s bodies are different and dosages can affect people differently.  If this bill goes into law,  legitimate pain patients will be bedridden and writhing in pain.  Please help us and learn about this side of HB 4601. Our Michigan Government needs to step in now, to help other government leaders and those in Washington D.C., to understand this huge gap between pain patients and drug addicts. There are two distinct groups included in HB 4601, but we are being “lumped together” as one.

In Oakland County Michigan, the Board of Commissioners has taken a stand against this historically old proposal. They unanimously passed a resolution stating that HB 4601 “infringes on a doctor’s ability to care for patients by substituting  the Legislature’s opinion for the opinion of individual medical professionals.” The board also advocated a balanced method “that specifically targets addiction and abuse while protecting the rights of patients for whom these prescriptions are medically necessary”.  Please help the chronic pain community. We are human beings and we deserve our rights and our lives protected by the state of Michigan and the USA government as well. Please don’t take the rights of our educated physicians away from the decision making process. Educate them more in the area of chronic pain management, but the doctor patient relationship should still stand.  Our Senators, Governors and even our President, need to be educated in this area.  They need to understand the differences between addiction and dependency; along with the difference between drug addicts versus legitimate chronic pain patients.

I implore you to help stop this in Michigan and everywhere. I understand that balance is hard, but we need to think of the real people that HB 4601 affects.  Slashing dosages of opioid pain medications or taking it completely away from people that it has been effectively helping is cruel and abusive. This is America! What is happening to us when the government steps in and takes away a doctors right to treat his patient effectively?  If we can focus more on the people, we would start tailoring laws to address societal harm and avoid legislative dragnets that sound good in headlines but bring danger and harm to too many  citizens. We need to do better for the legitimate chronic pain patients for whom all other methods have failed.

We ARE here, we ARE in the room.  Please join me in helping to make the government and elected official listen to our plea!

Excerpts taken from DetroitNews.com

9-12-17 “Opioids Treat Real Pain; Don’t Limit Drs”

June Is PTSD Awareness Month


22926ff6e6fbc753e39604838d9ab1bb

With all of the different awareness ribbons and events, fundraisers and 5k walks for different illnesses out there; not many want to talk about PTSD. During the month of June each year, time is set aside to remember the illness called “Post Traumatic Stress Disorder”.  It seems to be an awareness month that we don’t talk much about but it is a very real illness.  PTSD is a disorder which can occur when there is a failure to recover after experiencing or witnessing a shocking, scary, dangerous and/or terryifying event or events. According to the Mayo Clinic, there are more that 3 million cases each year in the United States.

This illness can last months or years, with certain words, ideas and even smells that trigger the memories of the trauma. Along with the memories that return, there are intense emotional and physical feelings and reactions in the body.  Some of the symptoms of PTSD might include things like depressed mood, anxiety, nightmares, flashbacks, heightened “fight or flight” response and avoidance of situations that bring back the trauma.  There is treatment for this illness which may include Psychotherapy, behavioral therapy and medication.

There is a natural “fight or flight” response in our bodies that is supposed to warn us when there is danger near or that something terrifying might happen.  It is normal to feel afraid during and after a traumatic event or situation occurs. This fear is something that brings about a chemical change in the body to protect us from whatever may be happening that is fearful.  It is the body’s way to help defend against or avoid danger or dangerous situations.  Most people recover quickly and naturally from the initial symptoms of a fearful experience.  There are those who continue to experience problems and feel stressed or frightened even when they aren’t in danger any longer.  These people are sometimes diagnosed with PTSD or Post Traumatic Stress Disorder.

Not everyone who experiences PTSD had been through something very dangerous, but instead may have experienced the loss of someone very close to them. The symptoms usually begin within 3 months of the traumatic event, but often can occur immediately.  These symptoms must last more than  one month  and be severe enough to interfere with working and personal relationships, to be considered true PTSD.  Some people can and will recover within 6 months, some have chronic symptoms.  A Doctor who has experience with mental illness, such as a PHD Psychologist, Psychotherapist or Psychiatrist is needed to diagnose PTSD properly.

One of the most common things that people experience with having PTSD is called “flashbacks”.  This happens when you relive the traumatic experience inside of your mind or body over and over.  There are physical symptoms like a fast or racing heart beat, sweating, bad dreams and invasive fearful thoughts.  People with PTSD also try to avoid smells, places and situations that remind them of the experience(s). An example might be a bad car accident; afterwards a person with PTSD might not want to drive a car or even be a passenger.  When you have this illness you are or can be easily startled, you may feel “on edge” and have insomnia or have trouble sleeping. When someone experiences these unpleasant feelings after a traumatic event for just a short time afterwards, it is called ASD, or Acute Stress Disorder.  When they last longer and affect a persons ability to function, it is then called PTSD.

If you would like to participate in the June PTSD awareness month events on Social media, you can visit http://www.ptsd.va.gov/about/ptsd-awareness/promo material awareness.asp.  You can also follow the National Center for PTSD on Facebook and Twitter.  Those links can be found at the bottom of the website at http://www.ptsd.va.gov.  No matter how much you think you know about PTSD, there is always more to learn and ongoing research, new treatments etc.  Please take action, help those who suffer and live with this illness by visiting:  www.ptsd.va.gov/public/wher0to-get-help.asp.  Spread awareness as often as you can, but especially during the month of June each year.  This is the month which is set aside for people to share information and make people more aware of this debilitating condition that I, and many others live with. Take the mystery out of this condition, learn about it, find out who is affected an how you can help.

NCPTSD-Aware_FB_HighRes.jpg

 

 

A note About Hyperalgesia from Dr. Forrest Tennant MD



I run several support groups for various Chronic Pain illnesses. This was posted in a couple of my groups by Dr. Red Lawhern, PhD. He got a note from Dr. Forrest Tenant; who is a legitimate and well known pain specialist. An M.D., Dr. Tennant is a supporter for the appropriate use of opioids.  Here’s a copy of the note from Dr. Tennant to patients, caregivers and advocates for people with chronic pain:

The following is by Dr Forrest Tennant, MD, who is board certified in both pain medicine and addiction medicine. I have his permission to pass it on to pain patients and their families.

5/30/17

HYPERALGESIA: NO REASON TO STOP OR REDUCE OPIOIDS

By

Forest Tennant M.D., Dr. P.H.

Please circulate to patients and families who need guidance on this subject.

One of the excuses that some health practitioners are using to stop opioids is to claim a patient has hyperalgesia (HA). This is a most dishonest, devious, and dangerous ploy.

First, the definition of hyperalgesia is simply that a stimulus such as hitting your thumb with a hammer is more painful than usual. Second, there is no way to measure or quantify the presence of HA in a chronic pain patient who takes opioids. Practitioners who claim that a chronic pain patient has HA usually do so because they don’t like the dosage that a patient must take to relieve pain or they have a bias against opioids. Some practitioners are actually telling patients that HA is harming them, and that their pain will improve or even go away if they stop opioids!! This dishonesty and deviousness may go further. Once off opioids, the practitioner may recommend that a patient have expensive, invasive or unneeded procedures. Danger may come with abrupt cessation of opioids in a severe chronic pain patient. There may be a combined or dual result of a severe pain flare along with severe opioid withdrawal symptoms. This combined effect may result in a stroke, heart attack, psychosis, or adrenal failure. Some patients may commit suicide.

All who read this need to know that many expert pain specialists either do not believe that HA even exists or that it is irrelevant to clinical practice. In other words, if a certain dosage of opioids is effective, continue treatment with opioids. There is no reason to stop or reduce opioids just based on HA.

Any time a patient is told they have HA and should stop or reduce opioids, they and their family or advocate should ask the following questions of the prescribing practitioner:

1. What test or evaluation did you do to determine that I have HA?

2. If I do have HA, what damage is it doing? (Show me some studies!!)

3. When did I get HA? (Nothing has change in some time!)

4. I’ve heard that HA may be the result of too much neuroinflammation or hormone deficiencies? Don’t I need to be tested for these?

5. If I stop or reduce opioids and still have some pain, what are my alternatives? (Will you return me to my original opioid dosage?)

The author’s personal recommendations are: (1) If your opioids don’t seem to be as effective as they once were, get a hormone panel blood test. I’ve seen many patients boost their opioid effect by replenishing pregnenolone, testosterone, estradiol, or another hormone that has diminished.; (2) If you wish to reduce or stop your opioids, reduce your dosage about 5% a month. By slowly tapering you may be able to greatly reduce or even stop opioids.

Please inform all parties that HA is not, per se, a reason to stop or reduce opioids. More important, if you reduce or stop opioids, what is your alternative, and, if the alternative doesn’t work, what will you do?