Opinion: Pain in Our Lifetimes

Opinion: Pain in Our Lifetimes

By Fila Paragas.

I am a chronic pain survivor from Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD).  Recently, I started thinking about pain in our lifetimes.

Pain affects all of us during our lifetimes whether we are male, female, young and old. It can come from minor occurrences such as toothaches, stomach aches, and headaches, and from more serious procedures and interventions, and from childbirth, surgeries, and acute or chronic illnesses. Pain also affects those afflicted by unanticipated incidents and accidents from sports and auto accidents, work place-related injuries, wars and humanitarian crises, among others.

Pain has been there since the history of time.

Even King Henry VIII suffered serious leg problems that caused him unbearable pain. Walt Disney experienced chronic arthritic pain having broken four cervical vertebrae in a polo accident.

So, why has pain been neglected and disregarded by those who should have been more aware for far too long and instead put in place alongside as those other diseases? Why are there no proper protocols and effective and individualized treatments in place to treat those afflicted with pain in all situations and for different diseases? Why do patients have to be branded as “addicts” and suffer unnecessarily in order to get the attention of policy makers and stakeholders to recognize the severity and damages of pain?

The burden of pain is great.

One can take aspirin or over the counter pain pills to relieve a simple headache for example. Later, one feels better and goes on with the day eventually. Or one does not have to take any medications at all. A good rest and perhaps a nice cup of warm tea will do just fine.

However, relentless pains, under or over treated, has a tremendous impact on people’s quality of life and well-being. This applies to people in all different walks of life — rich and poor, and in different circumstances of life anywhere in the world. Suffering is suffering. The definition of pain and suffering put together can conjure our subjective imagination and interpretation. Why are horses with broken legs put out of their misery? You probably know what is done in such a case, or at least you can imagine. Are human beings to be treated the same way if there is no way out? Resorting to suicide would not be surprising for the ones whose pain does not subside — those whose pain prevents them from functioning and living with some dignity.

It is rather obvious that each one of us is different in appearance, sizes, and body makeups. One can imagine that pain also comes in different sizes too. So, why do the ignorant ones and even those that set the policies, often with no proper background or personal experience with chronic pain, assume that one medicine dose of certain limit is a one-size fix-all for different patients with different pain symptoms and conditions? It is rather shameful and arrogant to put oneself above others that suffer needlessly instead of lending a helping hand at least. For those in decision making roles that affect the livelihood of patients, it is NOT OK to step on or bash down the already vulnerable ones.

Walk in their shoes before making judgments.

Europe has taken a major step to help patients with pain through the recent efforts of June 2017 conference in Malta. The event called for action “on access to treatment for patients suffering from chronic pain” and brought together health care systems, pain stakeholders, and policymakers from European countries.  According to Societal Impact of Pain (SIP), “This is a substantial step for pain patients throughout the EU towards getting pain recognized as a disease in its own right.”  It was a long-awaited recognition for society, patients, and relatives.

On the other hand, with hardworking taxpayers’ monies for funding and foremost from the US taxpayers, it is a shame that the World Health Organization (WHO), now with zero credibility from several scandals surrounding their deteriorating ethics and integrity, has failed yet again to take the leadership role for the health of the world as it trails behind the bandwagon of the others. Meanwhile and sadly, the US government is still embroiled in the healthcare bill. Nevertheless, let’s make the commitments into a reality. Let’s put patients first and, above all, listen attentively and take good care of them!

Fila Paragas is a former UN/WHO officer with specialization in budget, program planning, and finance. She wrote her illness memoir after her long suffering from chronic pain conditions from a minor bone fracture in the foot and her efforts for recognition of Complex Regional Pain Syndrome (CRPS), by her former employer, the World Health Organization (WHO) in Geneva, Switzerland. Her memoir recounted her long journey with the medical community to reflect the poor knowledge of pain by those involved. The E-book, Hear My Voice, Living with CRPS: A Chronic Pain Journey is available on Amazon Kindle.

Her contact email is hearmyvoicecrps@gmail.com.

Authored by: Fila Paragas

There are 14 comments for this article
  1. Misti at 4:09 pm

    dphd, Maureen, since taking survey the specifics have eroded me it was an all political survey trump or clinton and issues that I have never heard brought up in any public debates …. I am worried just as much as anyone else…

  2. Maureen at 11:28 am

    Misti, wow! Your comment about the survey is very interesting, to say the least!
    I recently had to fill in a 2 page form at my pain doc’s office with suspicious questions, somewhat of the kind. It concerned me greatly.

  3. dphd at 6:54 am

    Misti-
    Can you give us any more details about the survey you mention?
    This is extremely concerning…”The ? asked was would you be for legal euthanizing legal killing if you or a family member were in severe unrelenting chronic pain and you and family were in agreement to euthanizing.”
    I have noticed this attitude in growing in the public mind, editorials, small talk among friends in populations where the laws are being passed making euthanasia legal. These are states where pot is legal and medical pain care with opioid medication is being frowned upon heavily..UGH.
    I guess they can’t be bothered treating pain anymore.

  4. Misti M at 6:36 pm

    Many months ago I was doing paid surveys and this is when the the election was up and coming I have sat on 1 of the ?’s asked for a long X thinking WTH
    The ? asked was would you be for legal euthanizing legal killing if you or a family member were in severe unrelenting chronic pain and you and family were in agreement to euthanizing.
    this was a political survey who will u vote for what are your views comment after was not a part of survey just a yes or no answer

  5. Maggy Mitch at 2:18 pm

    I’ve suffered from chronic neuropathic pain for 24 years. For the first 14 years, I went from doctor to doctor, had dozens of treatments, with very little relief. I finally found a pain treatment center where I got enough relief from opioid medication so that I could get out of the house from time to time and carry out my daily duties. Politicians must realize that people like me don’t take opioid medication to get high, just to lessen our pain and to have a semblance of a normal life.
    Are there any organizations that take up our cause with the agencies that are trying to take our pain relief away? It is only be organizing that we can have a voice in the decisions that are being made about the quality of life we are permitted to have.

  6. Karen at 8:18 am

    I forgot to mention that I also live with what used to be called The Pain Disease–Vasculitis. Don’t want to leave out out the spondylolithesis in my neck along with spondylosis up and down my spine. Just want to be fully honest!!

  7. Karen at 8:05 am

    I have been in terrible pain for 35 years. I am a MCTD patient with the “mix” so far being SLE (Lupus), Rheumatoid and Osteoarthritis, Sjogrens, Fibromyalgia, several neurological problems and peripheral neuropathies. For the first 24 years I fought the pain with all my might, trying exercise, baths, gels, creams, herbs, NSAIDS, trigger point shots, surgeries on joints etc. Sometimes one or two would help for a few weeks, but no lasting help. I lived on aspirin like they were M and Ms so I developed stomach ulcers. My face was so contorted by the pain all the time one organization asked me to not sit up front because I was a bad example. At age 47 my husband and I left ministry and moved to a large metroplex. There I found my wonderful pain medicine doctor. We tried everything we could OTHER THAN narcotics by my refusal to take them. Physical therapy helped while I was there doing it, but I lost the relief by the time I’d get to the car afterwards. I’ve been on Opana ER for 9 years, holding at one 40mg per 12 hours for two years. My doctor does drug testing every visit. I’m also prescribed 10 mg Percocet for breakthrough pain. All is okay, not pain free as the arthritis is starting to deform my joints. Now big brother is taking away my minimal relief because some randy dope addicts are contracting HIV and bowl diving pills at parties while their contemporaries shoot up Opana. That seems fair doesn’t it? Since I read about it Monday night, I’ve gotten roughly 6 hours of sleep–TOTAL–out of the 36 hours available over 4 days. No, I can’t nap either. I’m a mess. “They” are taking away my only pain relief that works for me. Am I worried about missing the high I get? Lol!! I haven’t felt any high since I took the first couple of 10 mg Opanas YEARS AGO. Yes…government once again at it’s best.

  8. David at 4:29 pm

    The EU has yet to take energetic action on pain. There have been numerous meetings of bigshots with lots of policy talk and crocodile tears. The U.S. hasnt had as much talk by bigshots but also lacks energetic action on improving pain care.
    Its clear to me experts and government in the EU and U.S. lack the right stuff to make pain care much better. They have been under old spells that made them believe pain is insignificant trifle. They also are lacking in moral imagination and judgment. Theyre too modernistic in their philosophy and that blinds them to their shortcomings.
    As Jefferson wrote let their reign end their spells dissolve and the public restored to right reason. Failing that civil society will have to expel the experts and create a new order.
    I hope soon that society will demand much needed and long overdue transformation of pain care.

  9. scott michaels at 3:59 pm

    this iis what the decision makers need to know and be FORCED TO SCKNOWLEDGE.
    WHAT GOOD AMERICANS ARE BEING FORCED TO GO THROUGH SHOULD BE CRIMINAL. WHEN A VERY VERY SMALL % of PEOPLE THAT MISUSE DRUGS AND ALCOHOL ARE MORE IMPORTSNT THEN TRULY DISABLED PEOPLE THAT NEED OPIOID MEDICATION FOR RELIEF AND LIFE QUALITY OUR PRIORITIES ARE WRONG! THIS IS ABOUT INSURANCE COMPANIES SAVING A TON OF MONEY. EVEN THE CDC SAID ILLEGAL PRESVRIPTION USE IS DOWN IMMENSLEY. HOWEVER THOSE WITH SEVERE CHRONIC PAIN ARE BEING IGNORED AND DISCARDED AS TRASH. HOW MANY WILL TURN TO HEROIN OR END THEIR LIVES BEFORE THEY CAN BE TREATED AGAIN.
    ADDICTS ARE ADDICTS FOR LIFE. THERE IS NO RIGHT AMOUNT OF OPIOIDS FOR THEM. THE ANSWER IS ZERO.
    THOSE IN RECOVERY KNIW THIS. THEY WONT TAKE 1pill.
    90 mg mme a joke.an addict will just takethe month supply all in a day or two. a pain patient will still take as directed, make it last a month but be in severe pain the whole time. some drs say then the medicine doesnt work. thats the big lie. aIT MEANS ITS NOT ENOUGH. ESPECIALLY WHEN 3TIMES THE DOSE TOOK MOST OF THE PAIN AWAY. THE PATIENT IS NOT AN ADDICT. BUT DEPENDENT FOR A QUALITY IF LIFE. HUGS FROM GRANDCHILDREN NOW HURT AGAIN. I CANT ALLOW HUGS FROM MY GRANDCHILDREN AT 90 MG MME. AT 360 I CSN HUG. WSLK DISNEYLAND FOR A FEW HOURS DO MINOR HOUSE WORK AND BE WITH MY WIFE. THE CDC AND KAISER HAS TAKEN THAT ALL AWAY. BECAUSE IF IDIOT JUNKIES THAT GOT LOADED AND THEN MIXED OR USED HEROIN CGASING A HIGH. WRE JUST WANTING PAIN RELIEF NOTHING ELSE WORKED WEVE TRIED EVERYTHING MANY TIMES BEFIRE COMMITING TO A LIFETIME OF PAIN RELIEVERS. BUT THEY SAY I NEED TO TAKE HEARY MED DAILY DIABETICS TAKE INSULIN DAILY. THERE IS JO DIFFERENCE. GIVE US OUR WORKING DOSAGEE BACK PLEASE!

  10. Maureen at 3:25 pm

    Fila, Thank you for putting down your words as you have here.
    I especially like the analogy of ‘why horses with broken legs are put out of their misery’. Or other animals, for that matter.
    It is for that very reason that many thousands of chronic pain vets and civilians have taken their own lives in the past 2-3years. No one can ‘live with’ the extent of the pain that we do, without medication and proper treatment.
    In the past I’ve gone without meds for a short time and it is all I thought about.
    My entire body’s systems were effected, I had a fever and my heart was pounding, from the heightened pain. I looked like a completely different person and I cried constantly…until I found a new doctor and got my meds back on board. The best of all to you, Maureen
    I knew that I could not continue to have lived that way.
    E

  11. MichaelL at 12:05 pm

    Well described problems with us chronic pin sufferers. As a past “pain doctor”, and now one of its consumers, I can relate to the results of the ignorant trying to run the show. At the present, I see us as “disposable deplorable-s”! We do not have enough political clout to get the attention of those in need of a massive education effort. I learned, long ago, as a physician, that our education can,sometimes, cause more problems with the doctors who see themselves as omniscient omnipotents. Sadly, as a past practitioner of the art and science of medicine, I know that we can never know it all! The problem is getting the doctors to listen to our plight, aws well. Oh, how I wish there was someone like a JFK to champion our cause!

  12. Ibin at 10:28 am

    As stated, pain in a form of “temporary”, or long term, “lifelong” does come to every, individual. I agree that an OTC medication may reduce pain to a tolerable level. I don’t like the phrase, as one narrative has stated, as the word “chronic” implies that the pain is preventable, emotionally, or otherwise, by the patient, or is a manageable health condition without sufficient strength or sufficient dosage of the proper, opioid, if necessary, medication.

    As a pain patient for 20 plus years, motivated by self reliance, children to “get prepared” for life, a spouse that I have committed to, an amount of dignity and self sufficiency that comes with providing for my family and helping my friends under my own power, my own strength, my own effort through medication has been removed by, policy makers. The only, the last, the final resource to reduce unmanageable bodily pain has been removed from possibility with an unsubstantiated, unwarranted, unnecessary, “policy” by health care “governors” with the LAST medication or treatment that helps the pain patient retain some level of self reliance.

    The policy makers have removed sufficient medication, for approximately 30 million Americans, that’s a great deal of people, and I do not know how many suffer through no “cause” of their own worldwide but, to simply make policy, and expect or “make” the pain patient do with what they “allow” is sufficient, is asinine. The same policy makers that are not doing “without” if pain medication is warranted, to them.

    The “sheeple” policy, just won’t do.When elected by the American people, or appointed to the various boards and committees, BY the elected, these people can not “cull” a certain, a great many millions of people from society labeling us, tagging us as drug addicts. The same people that if lifetime pain OR “acute” pain, severe enough, WILL send them to a physician…..for pain relief.

    A policy for assistance to we people that have life long pain, regardless of the mentioned sex, race, or age, injury, or disease brought on, thrust upon, people that wish only, to have some independence, some sufficient pain relief, in life.should have nothing to do with the fact that we have a “manageable” pain health condition that is being disregarded by current
    “policy”.

    Policy that forces the possibly of decades long pain patient to HAVE to reduce medication through the “provider” system that, threatens the provider to be reluctant, no, impossible, to use their best judgment with examination, all available “tests’, drug screening, and all methods to “make sure” that the patient, in fact is, in an unmanageable pain generating health condition. A condition that is not treatable, “curable’, and the last option to decrease “pain and suffering” is “opioid” medication.

    Furthering asinine “policy” is the fact that the policy makers MUST have known that continuous, severe, life long pain does exist and can be managed, responsibly through our providers and responsible use, by the patient. Patients that have been documented, some for decades, as warranted, vetted, responsibly “ultimate” users of pain medication in a sufficient strength, sufficient dosage, to help relieve unbearable bodily pain. Patients that can not get relief through ANY other means, any other medication.I would call it in fact, patient abandonment. A term used in treatment by our health care providers.

    Our policy makers, did NOT bother to use their “insight” for pain patients into any other resource of pain relief, provide any “policy” for we patients to rely upon, any other avenue, professional “service”, literature, or “back up” plan other than to comply……with 90 mme, daily. Policy makers even though a building, critical mass, of some 30 million people in America is evolving into, rapidly. People that can no longer function in almost ANY capacity. Millions of patients that could still manage their household requirements. Millions of patients that were, still able to be self providing, through employment to meet their financial obligations,that never end. Patients that could still be using their driving privileges, for the necessities of life. Food, doctor appointments that may have NOTHING to do with continuous pain, preparing meals for their children before school, paying their home, mortgage payments, car payments, utility bills.

    Yet the policy makers state, there are other “policies” for the assistance in the above mentioned needs. Yeah, file bankruptcy, file for SS disability, food assistance, utility assistance. All this “assistance” for those who can hardly do any more than be bed ridden. Very intelligent “policy” making for our elected, appointed, “officials” that do not have the faintest clue what continuous pain in life is like “living with. Continuous pain that was being managed, legally, without infraction of previous policy by the responsible patients, responsible providers..As in ANY and ALL society, there are those that need a different “policy” that fail to use, their own, responsibility . In the policy makers “estimation”, we who use medication for true, necessary benefit far outweigh those that do need assistance, with different issues, substance, alcohol abuse.

    Critical mass will happen but, the unyielding policy makers will be “late as usual” in an effective amendment, or reasonable change, or if necessary, totally abolishing of an asinine “policy” that is dong far more harm than good for the intended, stated, published target of the people that have substance abuse situations. Policy makers “speak” to the people that placed them into a position to “govern”, not listen, to real harm,real pain and unnecessary suffering that the very people that placed them into their positions, to assist, prevent harm, pain and suffering, injustice, persecution, and insurmountable situations that effect so many, so radically, so unnecessarily. As Fila Paragas narrates, “walk in the shoes” of another, before deciding their fate, if placed into the position of “authority”.

  13. William Dorn at 8:52 am

    Everyone send a copy of this post to your lawmakers.And your local news stations.We have to get the word out.

  14. Debbie De Anda at 8:30 am

    If they take my pain medication away u will seek out heroine, marijuana, and or if that don’t work I will kill myself. PERIOD POINT BLANK

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