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Words Of Pain 

A Chronic Illness Community Blog 

Giving PAIN to help with Pain?

7/26/2018

3 Comments

 

I read an 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 and torturous  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!
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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 absurd!
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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!


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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. 
Written by Suzanne Stewart on tearsoftruth.com
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 


3 Comments

UNLESS YOU'VE BARGAINED WITH GOD IN  PAIN, STAY OUT OF THE OPIOID DEBATE

7/12/2018

7 Comments

 
The debate over pain medication is a dominant topic in the current medical society. We hear constant news stories about opioid overdoses, people illegally selling pills and blatant misuse of medications to manage pain.
In the current political and medical climate, it is no wonder that doctors are hesitant to write prescriptions for pain medication.

I typically try to avoid controversial topics but I feel as if this topic needs to be addressed. I feel as if those who have never suffered agonizing pain are the dominating voices in this debate.

Let me first say that I am all for healthy eating, exercise, alternative and holistic therapy as the first line treatment for pain. True healthcare should seek to eliminate the source of pain instead of simply mask it with medicine. For example- With the disease of arthritis, there is much research that eliminating gluten and dairy and adding an exercise regimen lowers inflammation rates in the body and helps improve a patient’s pain level.  Medical solutions such as physical therapy and holistic nutrition can help manage pain in various other diseases. Self-care, getting proper rest and hydration should also be first line solutions when trying to manage pain.

But what happens when even with the addition of the exercise, healthy food and rest a patient is still in pain?
I was this person. I was the person who tried everything possible to manage my pain to no avail. I’ve been gluten free for 7 years, dairy free for 2 years, I am in physical therapy for exercise, etc. I started having severe pain at 12 years old. I later discovered I had endometriosis. I started having chronic kidney stones and infections at 15 years old. I later discovered I have Medullary Sponge Kidneys.

I visited emergency rooms many times in my young life. I saw countless doctors. I saw every specialist available in my area. I suffered with horrible, gut wrenching agony throughout my teenage years. I missed work and school frequently.

Not one doctor ever offered pain medication to me. In my young life, I struggled with severe pain. My body was so taxed for so many years; I developed adrenal failure (Addison’s disease)
I can only help but wonder, had my pain been managed….had I had some relief….would my body ended up in the state that it is in now?

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Anyone who has ever had a kidney stone will tell you it is one of the most painful experiences possible. You feel as if you are being stabbed to death. You are nauseated. Your whole body feels like it is under attack. The infections that come with chronic stones are just as painful. I was constantly in danger of becoming septic. With the endometriosis as well, my young life was filled with agony. I suffered with agonizing pain, migraines, stones, etc.

Advil was my go-to medication. Which anyone with stones will tell you…it is like eating grape jelly when you are in that much pain.Pain medication was never offered to me, because I was so young. I couldn’t possibly have been trusted with such a big responsibility a doctor once told me. I was a 4.0 GPA, straight a student, was on debate team, volunteered at church, still have yet to take even one drink of alcohol. I didn’t even drink soda as a teenager for goodness sake.

I suffered, because I was young.
There are many others that suffer because of ignorant doctors.

Now, at 24 years old, I know what is wrong with me. A doctor FINALLY looked past my age and into my symptoms.  I now have to see a pain management clinic every 30 days just to get a script. I pay $60 co-pay just for “pain management.”
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And that right there is something that has been silent in this debate- The concept of pain management. You see, with my health there is not one moment I am not in pain. The pain medication simply makes it on a level where I don’t absolutely lose my mind. This is not always the case; sometimes my pain is so high that the medicine doesn’t even touch it. Anyone with severe chronic pain will tell you the same story. Pain medicine is a means to cope with the agony. They do not make us feel good. They don’t even make us feel normal. They just make it to where life is a little bit less of a torture session.

Imagine how terrifying it would be to know that there is a movement that is trying to take slight relief away.
Pain medicine is not a means to get high. Any pain management patient would rather not be on medication. We would much rather live our lives without having to worry about taking pills just to move.
I was never offered pain medicine and now I suffer from adrenal failure. I will always wonder if my body not been so physically taxed would I be where I’m at in my own health.

My message is this-
If you have never been in so much pain you started bargaining with God, then you have no right to an opinion on whether pain medication should be prescribed or not.
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Most of us with chronic illness do the bargaining with God conversation at least once a week. If something makes your life better, it is legal and it doesn’t harm anyone else- by all means keep that in your life.

Pain medicine does not take pain away, it is not a means to get high, it is a means to sustaining somewhat of a life. Please educate yourself before you jump on the anti-opioid bandwagon.
 
 This post was originally published on Winslow E. Dixon

Author Bio-
Winslow E. Dixon started her young career in geriatrics. She specialized in Alzheimer’s Disease and dementia and worked as a resident care director/memory care coordinator. She then continued her education, studying holistic health and nutrition.  She worked as a holistic health coach, aromatherapist, licensed med-tech and licensed medical thermographer. 

Upon her diagnosis of Medullary Sponge Kidney, Endometriosis and Addison’s Disease, she was forced to find a new purpose. Winslow is now a published author, freelance writer and journalist.  She volunteers her time as an advocate for those suffering with chronic illness, rare disease and disability. She is also a motivational speaker and has dedicated her life to spreading hope to those who are suffering through her patient advocacy organization, “Adrenal Alternatives Foundation.”

In the meantime, she is a journalist and political activist for chronic illness, rare disease and holistic health. She is an avid writer and her fiction series – The EverVigilant Trilogy is the process of worldwide publication- release TBA.

For inspiration and encouragement, feel free to visit her website at-Winslowedixon.wordpress.com or follow her official author  page https://www.facebook.com/winslowedixon

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