My Story: Pushed Beyond Hope

My Story: Pushed Beyond Hope

By Angelika Byczkowski.

Over the last few years, the accumulation of forces against opioid prescribing has pushed me over an edge, pushed me past my sense of self-preservation, and led to a fundamental shift in my expectations of life.

Angelika Byczkowski

If the increasingly anti-opioid, anti-pain-relief, and anti-factual campaign succeeds, I will not die of old age. I may suffer a fatal accident or disease before I succumb to a more distant death but if I don’t, I’ll eventually have to take matters into my own hands.

At 60 now, there is simply no way I can live another 20-plus years in my deteriorating, increasingly painful body without powerful pain-relieving drugs. Opioids have kept me afloat so far, but I can see that the movement to deny these medications to pain patients will eventually claim me as its victim too.

I drained my savings in an extensive, expensive, decades-long medical search to find the cause of my increasing chronic pain, assuming that my pain could then be cured. Thousands of dollars later, I learned this would not be the case.

So I followed every lead and tried every non-opioid treatment suggested by any doctor I was seeing. This finally led to the disappointing discovery that my intractable pain can only be controlled by opioid medication.

This was difficult to accept. I don’t want to take these drugs. I don’t want to be dependent upon pills and our broken medical system to save my life. But I am.

My pain comes from the connective tissue defects of Ehlers-Danlos Syndrome. Because this is a genetic condition, there is no possible cure or remedy for the pain that arises from having flawed tissues holding body parts together.

With this incurable and untreatable diagnosis, I know my symptoms will only increase as I age. Fortunately, I found a doctor still willing to prescribe me opioids to control the inescapable pain, and this has allowed me to retain a relatively decent quality of life and functionality.

However, my access to these pain relievers is increasingly threatened by the current campaign to arbitrarily restrict all long-term opioid use. There is no differentiation made between addicts, abusers, and pain patients; all chronic opioid use is viewed as unnecessary and dangerous.

Sadly, there is no scientific evidence for the effectiveness of long-term opioid therapy for chronic pain and, due to ethical issues in pain research, there may never be. Yet the anti-opioid campaign twists this into a statement implying such research has already been done.

The anti-opioid zealots state, “There is no evidence that opioids are effective long term”, ignoring that the opposite is true as well: “There is no evidence that opioids are NOT effective long term”. The malicious intent of stating only the first half of the conclusion is clear.

Though my pain has worsened over the last few years, I don’t dare ask my doctor for an increase in pain medication. I fear any change could trigger outside scrutiny, which could result in an arbitrary decision by some bureaucrat to deny me these medications entirely.

The crusade against opioids overrides a doctor’s years of judgment, assessment, and treatment of their patient’s pain. There are no reasonable exceptions or limitations to the simplistic goal of preventing all long-term opioid use.

The anti-opioid campaign has no understanding, no sympathy, and absolutely no mercy for suffering pain patients. I fear it is only a matter of time before I am cut off and left to suffer untreated pain for the rest of my life.

Without opioids, my life will be an endless torment, and I cannot imagine allowing my pain to run rampant forever. The increasingly strident calls for a complete halt of opioid prescribing for chronic pain will be my doom.

Until she was disabled by progressive pain and fatigue from Ehlers-Danlos Syndrome and Fibromyalgia, Angelika was a high tech IT maven at Apple and Yahoo, and a competitive endurance athlete. She lives in a rustic cabin in the redwood forests of the Santa Cruz Mountains just up the hill from Silicon Valley with her husband and various 4-legged kids.

When her pain allows, she spends her limited energy researching, writing, and blogging about Chronic Pain, EDS, and Fibromyalgia at http://EDSinfo.wordpress.com and writes poetry to sustain her sanity.

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Authored by: Angelika Byczkowski

There are 49 comments for this article
  1. Jo Hale at 12:45 pm

    I have been following this website for awhile hoping to find others who are currently experiencing hardship due to the government’s interference in the patient-doctor relationship under the premise “it’s all about cleansing the earth from evil drugs”.

    I have been communicating with a journalist from a newspaper in Philadelphia called The Inquirer. I had originally contacted him after he wrote an earlier article in June on the opioid crisis and the “other side of the story”. He followed up with me the other day sharing his latest piece on the same subject. He is asking for pain patients who are detrimentally affected by the new CDC guidelines to send him their stories. I thought there might be some here who would be interested in connecting with him.

    His name is Don Sapatkin and his contact info is:

    Public health reporter: addiction and mental health
    The Philadelphia Inquirer
    Philly.com Health & Science

    215-854-2617 (preferred)
    267-443-3511 (cell)
    dsapatkin@phillynews.com
    @DonSapatkin

    Below is the link to his most recent article. I hope this helps us. I, too am a chronic pain patient on opioids due to an injury I incurred at 19. I fell from a scaffold and crushed 3 lumbar vertebrae. I’ve had 3 spinal surgeries since the accident with instrumention and 6 fused vertebrae. 3 steel cages were inserted anteriorly to keep me upright and help take the pressure off the sacroiliac to prevent further disentegration. I am 57 and have been on opioids for almost 14 years. I currently have access to my meds, but am trying to stay informed and active in helping as much as I am able to stop this madness.

    I don’t in any way, shape or form claim to have the answers, but I do believe we must find a way to organize and stay in the know. The sad state of affairs is that what has thrusted us into this horrendous situation in the first place is the very thing that prevents us from productively and successfully engaging in the battle. Even on opioid medication we’re never completely w/o pain which leaves us at a disadvantage. It’s hard to win a war when the soldiers are injured before even suiting up. Marching on Washington would prove difficult when most of us can’t get out of bed.

    I am thankful for those who are trying to get involved and help change mindsets. I am hoping it works. Grateful as I am my faith does not rely upon man. I know Who my Source is for all things. I hope we all find peace.

    http://www.philly.com/philly/health/addiction/another-side-of-opioid-overdose-epidemic-humiliation-of-pain-patients-20170921.html?mobi=true

  2. Geoff Sims at 12:01 am

    We reached out to “Pharmacist Steve” to find out a little more about this, he said he as “been told that Morgan and Morgan has been inundated with calls.” He also said he has been told, “that when the pt calls to use this info …
     
    Ask for the medical malpractice dept when they call. It would be a medical malpractice class action based on the harm caused to us by the CDC guidelines and the doctors.”

    We hope this is helpful.

  3. Danny at 7:44 pm

    BL, thanks for the info about the lawsuit (or there not being a lawsuit). Unfortunately, I have too much experience with lawsuits and lawyers, going back to the lawsuit surrounding my electrical accident. Funny thing about lawsuits is that there can be solid, scientific evidence supporting one side but, because of non-common sense laws, the amount of money one side (company) can afford to spend to simply drag out the process to keep the opposing side from keeping up and other issues, facts aren’t necessarily the most important factors.

    I can give some great examples of how these things work: 1) From 1990-95, the Internet & computers in the home was not mainstream like it is now. I found out about the U. of Chicago’s study of electrical injuries from a friend of the family, who saw a one inch blurb in a newspaper about it. Several phone calls later, I was enrolled. 2) The study in Chicago began in 1991, the year of my accident. After I went and was evaluated, my lawyers went there to depose several of the lead researchers. These men & women couldn’t testify under oath that the brain damage they determined that I suffered was specifically due to the electricity. Why couldn’t they answer that question? The study wasn’t over – no conclusions could be made because of the infancy of the study. By 1998, 2 years after I settled with the company who made the faulty water pump, these same doctors had published their results and stated that they were positive that injuries exactly like mine were a direct result of electrical injury. Most every study published today about electrical injury has a large number of footnotes that refer to this study. I didn’t want to get rich off of almost losing my life, but I was 33-years old and had a lifetime of SSI Disability benefits to survive on. I got some money, but don’t think for a second that I got what the McDonald’s hot coffee woman received. Maybe 40% of her total, which the lawyers then took 45% of that!

    I’m fortunate that, at least as of today, I haven’t lost my medications. I would love to try to help with the potential lawsuit in any way I possibly can. But, I know that any lawsuit is a long way away, if it ever happens. But that doesn’t mean that pain sufferers shouldn’t fight for it 100%! As for me, I know it’s just a matter of time before I’m in the same boat as all the others. I will always do what I can, no matter what. It may help someone down the line and it’ll be worth it.

  4. Danny at 7:16 pm

    This is the 1st of 2 comments I am making. To Pain Warrior: Thanks for posting about long-term effects of opioids on intractable pain. I haven’t researched the info you posted on my own, but I do have a few things to say about what was posted. (I have no idea who the author is – there is no personal ill will intended towards Pain Warrior, whatsoever.)

    “The findings of this systematic review suggest…” This grabbed me from the start. My thoughts were that a “systematic review” had been conducted, and I was surprised. It being followed by saying that there could be significant relief from intractable pain w/out a statistically significant risk of addiction/abuse, depending upon the person(s) selected at the start was all good, IMO.

    “However, the evidence supporting these conclusions is WEAK (I’d like more than this word to denigrate the current evidence), and LONGER-TERM STUDIES ARE NEEDED to identify the patients who are most likely to benefit from treatment.” Now, we’re back to square one. Haven’t we all heard that there hasn’t been enough long-term studies to determine whether opioids can provide relief/treatment for” chronic “, or intractable (my chosen word), pain sufferers? It seems that I’ve been hearing it for so long that a long-term study would be one-half (or more) over by now. Have these studies begun? What is the length, right now, and how long should we expect them to take before qualified results can be expected?

    The final paragraph sums it all up, in that special way we’ve become used to. “Many patients discontinue long-term opioid therapy (especially oral opioids) due to…insufficient pain relief; however, weak evidence suggests that patients who are able to continue opioids long-term experience clinically significant pain relief. Whether quality of life or functioning improves is inconclusive.” I can only speak for myself here, but for 26+ years, I have searched for doctors who were willing to do whatever was necessary to give me some relief. On 3 different occasions, I went a full calendar year without ANY narcotic medications, to prove or disprove the theory that my head pain (that started when I was electrocuted) was NOT the result of “bounce back” pain, a popular theory in the ’90s when no other answers could be proven. Those 3 years were hell on earth, but the “bounce back” theory was finally completely dismissed in my case. I strayed a bit just now, so back to the theories listed: Not once have I ever discontinued opioid pain-therapy because it didn’t work enough. ANYTHING that reduced my pain levels was great, in my book. The part that says “weak evidence” shows that when someone takes their meds long enough, they experience “clinically significant pain relief”. What “WEAK EVIDENCE”? I’d be very surprised if anyone who kept taking the pain meds and felt better than when not taking pain meds wouldn’t STRONGLY contend that the medication helped. That’s not “weak” to me! And when it says “Whether quality of life or functioning improves is inconclusive”, I say that have it completely bass-ackwards! If somebody needs strong pain medication to be able to get out of bed, then it’s definitely CONCLUSIVE that their quality of life or functioning is screwed up – not because of the pain medication that’s helping, but because of the disease, disorder or injury that ruined their life in the first place.

    It’s my humble opinion that people make things much harder than they really are. People who suffer severe, intractable pain have crappy lives. But those same people would do almost anything to have that pain reduced, preferably a lot but even a little is wonderful. Insufferable pain ruins a human life. Someone with that kind of pain who gets relief from pain medications has a better life than before, but compared to a person who has no pain issues at all? Life might not be as good as what the healthy person experiences, but less pain some/most of the time is ALWAYS better than the worst possible pain with no relief. It’s a no-brainer!! (Thanks so much Pain Warrior for your post. You showed me something I didn’t know existed and, for that, I’m grateful!)

  5. Pain Warrior at 11:28 am

    Opioids for long-term treatment of noncancer pain

    The findings of this systematic review suggest that proper management of a type of strong painkiller (opioids) in well-selected patients with no history of substance addiction or abuse can lead to long-term pain relief for some patients with a very small (though not zero) risk of developing addiction, abuse, or other serious side effects. However, the evidence supporting these conclusions is weak, and longer-term studies are needed to identify the patients who are most likely to benefit from treatment.
    Authors’ conclusions:

    Many patients discontinue long-term opioid therapy (especially oral opioids) due to adverse events or insufficient pain relief; however, weak evidence suggests that patients who are able to continue opioids long-term experience clinically significant pain relief. Whether quality of life or functioning improves is inconclusive. Many minor adverse events (like nausea and headache) occurred, but serious adverse events, including iatrogenic opioid addiction, were rare.
    http://www.cochrane.org/CD006605/SYMPT_opioids-long-term-treatment-noncancer-pain

  6. BL at 10:47 am

    Danny, no lawsuit is in the works. Being told “they are forwarding my case to the appropriate attorneys for a class action within their firm” does not mean they are going to take the case. Although most people might interpret as that.

    The general public is not aware of the requirements for a lawsuit or a class action lawsuit. It will take far. far more than having meds being cut or stopped because the doctors say they have to follow the CDC Guidelines, are afraid of the DEA, losing their license, etc.

    The attorneys will have to have evidence from the doctors what they told their patients is true. Hearsay is not evidence for this purpose.

    It is up to each doctor to interpret guidelines. If the doctors say they would not increase the meds or prescribe them if the CDC Guidelines were removed, there is no case. It is still up to each doctor to prescribe for each patient what the doctor thinks is best. If a patient does not like what a doctor won’t prescribe, they can find a new doctor. If they have to travel. It is not the doctors fault the patient lives where they do.

    The above is just a little of the evidence that is required. Medical evidence from the patients will also be required. A patient and/or their family saying they can’t function or cry in pain is not enough.

    It also has to be financially worth it to the attorneys or law firm. A lawsuit or class action lawsuit like this won’t be financially worth it.

  7. Danny at 5:07 am

    Apparently, there is a potential class action lawsuit in the works? Would somebody please put up the actual website address? I don’t know “Pharmacist Steve’s” website address off the top of my head. Thank you.

  8. Owl at 10:17 pm

    “Singing to the choir” here! All those things make a real difference in managing my life and my pain. Unfortunately, the many years prior to diagnosis were not so carefully managed and some types of damage simply cannot be undone. Maybe what we need is synthetic tendons and ligaments. Thank you for your input.

  9. Ellen at 3:32 pm

    Angelika – please see the Pharmacist Steve website regarding a potential chronic pain patient class action suit by Morgan and Morgan. There is a number to call, to tell your story. They need to hear from as many as possible so they may seriously consider this suit. For those who do call, please emphasize that you are calling regarding a CHRONIC PAIN PATIENT CLASS ACTION. I recommend mentioning this to each rep you may speak with during the call.

    If this interests you, please pass it on.

  10. Scott Kimball at 2:54 pm

    As much as I agree with the sentiments regarding the dispassionate response from government doctors and scientists concerning long-term use of opioids in chronic pain conditions, it is possible to see how these medications can affect you and your life, even in dependency. I have a terminal neurological disease which until recently was thought to be a very rare and novel case of Neuralgic Amyotrophy, a disease which Neurologists call “the most painful condition in Medicine.” And I’m currently taking 100mcg of Fentanyl every 72h and 2mg of Levorphanol every 6h for pain relief.

    Fortunately my medications actually help reduce my pain. Even though whatever this disease may be (ALS seems to be where we are heading next diagnostically) and however painful and challenging it is, I learned a long time ago to have a healthy relationship with my mind which I’ve recently been reminded of. The disease I suffer from has come very close to taking my mind from me, I’ve been fractured in pieces, swept back up again and fractured all over with a psyche so raw and unstable that it’s sometimes hard to tell truth from fiction. And sometimes truth IS stranger than fiction, believe me.

    But as a Buddhist of 15 years who has been in touch with a Zen practice for 7 I’ve learned that it’s possible to separate the sensation of physical pain from the anguish of emotional suffering. This isn’t some hokey mindfulness gimmick to try to get you to be more aware of what’s going on with your body, just my own personal experience.

    I’m 29 years old and with the help of Zen, medications, Dialectical Behavior Therapy, Health and Wellness Therapy, and Deep and Supportive Psychiatry with a doctor I’ve known since I was 19…it all helps me to get by relatively well. I can maintain most of the time.

    Like I said sometimes my mind fractures. I have psychotic episodes. Dissociation, derealization, depersonalization are all commonplace for me. I have trauma in my life going back to age 2. One of my sources of traumatic experience is my pain itself. It started when I was 7, 22 years ago, with chronic daily headaches…which I still have to this day most days.

    You can’t help how you feel or what you think, but as the Buddha said, “What we think is what we become.” If we all think in the framework of victimhood narratives we make ourselves victims. Having said that, it isn’t meant to judge anyone here. I’m sure there are pain experiences I don’t understand. Everyone walks their own path. I just know that I’ve been stuck in a victimhood narrative myself before regarding my chronic pain. What we think we become. Remember that.

    It was no easy task for me to develop a relationship with my mind and brain to be able to separate pain and suffering. And I needed help to sustain the realization that pain was just something that was happening TO me, it wasn’t part OF me. That’s been a journey of about 10 years now. Of diligent practice, daily meditation, focus, self-love, self-compassion, surrender, and acceptance.

    I’m not saying everyone should do it my way but it’s much easier to go through life in severe and chronic pain when you’ve realized some peace to have with that pain.

    Should we advocate for ourselves? Absolutely! Should there be correspondence flooding the offices of Congress, the CDC, the FDA, the AMA, etc.? Absolutely, our stories need to be heard! But do we need to make ourselves victims of the government’s lack of compassion toward people in need because they can’t see with their hearts the way we can? No, we don’t need to do that do ourselves.

    Write with passion, write your story with conviction, but don’t write your narrative from the viewpoint that your life has been trampled upon by the government. That will just feed their perspective of us as drug-addled junkies who are only in it for the meds.

    Your best bet is to communicate in some way, some genuine way to take your experience and make someone else feel it and know it. So that they know without it being said what the deprivation of your meds means to your survival and health.

    Be well dear ones!

  11. Joanna at 11:04 am

    Unfortunately, I can relate to this story all too well…

  12. BL at 10:47 am

    Ibin, No one should believe any doctor surrendered his license because he was prescribing more than 90 mg or that a doctor had their license suspended solely for prescribing more than 90 mg. It takes A LOT of consistent poor medical judgement over a period of time for a doctor to have their medical license affected.

    Often when a doctors medical license is affected it is because the doctor has a drug or alcohol abuse problem. In these situations the medical board temporarily suspends the doctors medical license until the doctor receives treatment and there is proof the doctor is no longer using drugs or alcohol. Then the medical board will put the doctor on probation, then reinstates their license with no restrictions.

    Some state medical boards post Disciplinary Actions taken against doctors on their websites. Some do not.

    It is a disgrace when doctors lie to patient.

  13. William Dorn at 7:55 am

    Every pain patient needs to follow Cindy deims advice. Make copies of your comments and send them to all your state reps,CDC, WHITE HOUSE,local tv stations and newspapers.If they where getting thousands of letters a day they might state taking notice.Thats how pain patients become a political force that they can not ignore.

  14. Cindy Perlin at 7:52 am

    There is new knowledge related to genetic diseases, related to what’s called gene expression. What’s been discovered is that whether a genetic disorder manifests, how quickly it progresses and how severely is related to lifestyle factors. So, even with genetic disorders it is important to pay attention to stress, diet, etc.

  15. Ibin at 6:39 am

    B.L., you are right. The “chronic” pain patient does, in fact, realize the danger of dependence upon opiate medication to ease the non stop pain. Regardless of what the patient condition causing pain. The possibility of death from withdrawal, is highly unlikely. Ever had a severe sore throat? A hangnail? A paper cut. It “gets” your attention. What IF the pain never went away? What if the pain was lifelong? I am not saying that a pain patients condition is that “light”. I am saying pain from a pain generating disease, an accident, or botched surgery. It happens. Some choose NOT to drink alcohol. Chose to NOT use illicit drugs.Sought pain relief, found it, and now because of the “experts”, state we are being “over” prescribed”, everyone HAS to reduce opiate medication, NOW. I suppose it would give the provider less”grief” but, it is causing those who could still be self reliant, to no longer be. Those who had been able to interact in their families lives, childrens’ lives, “provide” monetarily, to become unemployed. The patient knew of the nature of opiate medication and still chose to relieve pain to a tolerable level, at their providers advice to “use” prescribed medication. Maybe “walk a mile” in someones shoes, first. Patients in pain need a direction, not propaganda.

  16. Ibin at 6:20 am

    The first visit to my “pain specialist”, in March, 2017, AFTER dosage reduction started my meds down to 80% of the dosage before the mis-guided-line, my doctor advised me that one doctor, he did not elaborate whether a general m d or specialist, had already surrendered his license for “non compliance” to 90mme, daily dosage, and another doctor had received a license suspension for the same.. Both physicians in the same county, same state. Either my doctor is a complete liar, or the mis-guide-line is a mandate. It is worded as a guideline as per the state medical board “policy” which IS the “guideline” but , it is far more than a”guideline”.with enforced 90mme, daily. At the most recent visit to the specialist, I was told that about 2 “patients” per week were being discharged, from their drug screening. Overwhelming pain, insufficient prescribed medication, then in a desperate act to find a couple hours pain relief, a patient “wonders”outside the “agreement”, the path has narrowed even more. What contingency plan or appropriations, do the “experts” have for patients that have been reduced 50%, 60%, or even 80% on medication. Comply, suffer and die I suppose.

  17. Dave at 5:13 am

    Every government degenerates if left to the rulers alone and every profession is a conspiracy against the masses.
    50 years ago it was known that pain care was inadequate and despite a serious decay in compassion most Americans remain as morally and mentally lazy when it comes to pain care as their govt. Whose fault is that.
    Whilst some people like Zyp have made great efforts for change in pain care most Americans are morally and politically inert and inactive. And while its easy to point a finger at govt it was really health professionals in government who acted cruelly and carelessly toward people in pain. And whilst some advocates believe a few bad actors in govt misinterpreted the science of opioids they fail to see the reason such could happen and it can only happen when people in pain are not a political force to be reckoned with.
    Americans despite complaints about govt and pain care are visionless and passive and easily manipulated and controlled by big brother politics. I shouldnt have been the only American advocating for cures in the nps and i bet im the only one commenting on the fprs making a case for moral reforms in pain care.
    Its time for people in pain and other Americans to be more politically and morally active in pain care.

  18. Owl at 12:22 am

    Another great post and as a fellow Ehlers Danlos Syndromes sufferer, amazingly accurate as my story as well. EDS is a genetic disorder, no amount of meditation or diet or exercise system is going to change that. There is no book ever written that explains how to rewrite one’s DNA and to suggest that it is merely a matter of mindfulness is demeaning and degrading. I have talked with hundreds of people over the years who, like me, were so thrilled & relieved to finally, have a name, for why our own bodies have gone to war against themselves, only to find out that because one of our biggest symptoms is this horrible, debilitating pain, very few doctors will even take us on. It’s almost like we are expected to just suicide when the pain becomes constant!

  19. Michele Howe at 9:20 pm

    Sadly, I completely understand

  20. BL at 7:31 pm

    Chronic pain patients are aware of this risks of taking opiates. They are aware of withdrawals and the risks. It is extremely rare for someone to die due to opiate withdrawals from prescriptions opiates they are prescribed to them. Although they may wish they were dead if they have been on a high dose of opiates for a long time and do not slowly lower their opiates by decreasing the dosage.

    It is up to each doctor to prescribe for each patient what he thinks they need. Unfortunately, many doctor tell patients they are reducing their meds or stopping them due to new laws, guidelines, DEA, CDC, FDA, etc. The reality is it is the doctor’s choice and decision. Doctors do this because patients give them less grief when they think they have no control over it.

    When chronic pain patients threaten suicide or buying their drug on the streets, it does not help them or other chronic pain patients. It makes them and other chronic pain patients look like drug addicts that can’t and won’t live without their drugs.

  21. HJ at 4:02 pm

    It helps to know I’m not the only one having these thoughts. I want to fight and be and advocate but truly people who are not in pain… well, they don’t care.

    We’re alone… together.

    I don’t want to be fearful and I’ll hang in there and hope things get better. I wish some visible action could be taken by the community as a whole to raise awareness. I wish the media could be persuaded to show how complicated the opiod issue is. I wish some larger organization would fight back against politicians and file some petition that would protect chronic pain patients.

    I think we may find ourselves here, now, because we’re such a fragmented community of folks with different ailments.

  22. Roberta Glick at 2:21 pm

    Angelika, you have written my story so well it’s as if we shared the same core body, experiences, and issues. I too have EDS as well as Fibromyalgia, Chronic Fatigue, arthritis, sciatica and scoliosis. I also have had numerous surgeries (21) for breast cancer, spinal stenosis, scoliosis, gall bladder removal,. As a result I have multiple lumbar and cervical spinal fusions with instrumentation. There are ” loose screws” in my lower back; evidence of failed surgeries. All this began while I was in my early 30s, some 40 years ago. I have tried everything (physical therapies, epidural injections, every known NSAID, and so on and so on…..I also tried various pain meds ( neurontin, Percocet, Lyrica, oxycodone, OxyContin, fentanyl, Cymbalta……). I enrolled in a 40 day inpatient chronic pain program in attempts to find ways to calm the pain enough for me to get out of bed and take care of myself. I have never misused, abused, or become addicted to opioids or indeed any other medications. ( I refuse to call them drugs as that terms is value laden and carries negative connotations. My physician, a recognized expert in EDS has spent countless hours first talking with, then arguing with, and finally going through costly appeals processes with my Plan D carrier who refuses to cover the one med that gives me some relief…..buprenorphine sublingual tablets. Oddly, if I were an addict they would cover it, but I’m not!
    Hope has become merely another four letter word. There is no cure. There is no treatment. There are only meds that make life bearable. People like me don’t seek the ” high” that people without chronic pain seem to get from opioids. I don’t even know what being high is!
    This current war on drugs is misnamed. It is very targeted against people who must live without having a life. Against physicians who seek to help us in a responsible caring manner. Who KNOW their patient as an individual.
    I’m very tired. I hurt all the time. I am at a loss as to what to do. Where to go. How to make sense out of the misguided, punitive actions being taken to stop the use of opioids which, for some of us, is the only help we have.
    I didn’t mean to go on and on like this. My frustration, anger and despair just are beyond containment. Angelika, I hear you.

  23. J Wehrfritz at 1:47 pm

    PAIN is SUBJECTIVE, UNFORTUNATELY.
    Although I don’t WISH my chronic pain issues on ANYONE, I have admittedly more than once told people (who were telling me to “get over it”) : “I WISH THAT FOR JUST THIRTY SECONDS YOU COULD FEEL THE PAIN I FEEL 24 hours a day…”.
    People who don’t suffer from chronic pain DO NOT understand what we go through. I almost WISH I had some visible, observable evidence to show them…

  24. Jason Sax at 1:22 pm

    I am 100% with you. I am appalled at our government and their actions towards us. I suffer from 42 individual diagnosis. Including cancer, fibromyalgia, chronic pain syndrome, barretts esophagus, scoliosis, deep venous insufficiency, superficial venous insufficiency, tarsel tunnel syndrome, planter facia, cervical facet syndrome, lumbar facet syndrome, chronic headaches, nerve damage at L5 – S1 with fusion and the list goes on and on. Yet they want to treat my pain with 6 times the normal daily dose of nortriptyline, which is an anti depressant. I will not make it through this fight. Without help from proper doctors I will absolutely be forced to take matters into my own hands. Stand up, stay strong and finish this fight! Good luck to you all.

  25. Ellen at 1:17 pm

    Thank you for sharing your story, Angelika. You speak for many.

  26. Zyp Czyk at 1:12 pm

    Thank you all for your compliments and support – and understanding. I’m no longer surprised at how many other people have followed the same path of seeking a diagnosis and then needing opioids for untreatable, intractable pain. We’re all in the same boat and it’s sinking.

    Your praise of my writing makes me think it might be worth trying to publish this in a more mainstream publication, use it as a comment on articles that try to deny that chronic pain sometimes requires opioids, or perhaps make it a letter to the various agencies signing off on on policies that will lead us to our final end.

    As you know, it’s difficult to find the energy to do all this, and my discouragement makes it hard to find motivation to do much more. If anyone has any ideas of where else I could use this essay, I’d appreciate any suggestions. (Heat wave in CA today plus pain makes it hard to think at all)

  27. Clifford Walker at 1:00 pm

    I have been in a workers comp for 16 yrs. Back injury with a L5 S1 inner body fusion.
    Have chronic pain syndrome.
    Perifial Nuropethy.
    Fibromyalgia
    Complex Regional Pain Syndrome
    PTSD
    Anxiety
    Constance back pain
    Spine is starting to hurt all rhe time.
    My only pain management Dr. quit workers comp last yr. Has taken 6 months to get an appointment with a pain management Dr. 16 yr old case. Finally got appointment.
    Been seeing a surgeon as temporary Dr. I am up against the same prestigious about opioids. Dont know what will happen with new Dr and new laws. Was on Belbuca 150mcg 60 a month and Nycunta 150mg 180 a month. Lived a comfortable life. Now 4 norco a day just makes life tolerable. I just dont do much now. Cant take the pain of being active. Have a 4.5 yo daughter. I am the primary care provider for her. Wife still works. I now dont have the energy to give all I would like too or what we had before the med drop.
    My quality of life is suffering and so is my family.

  28. Idin at 12:35 pm

    There IS “evidence” that opiate medication can and does continue to be effective for long term use. I, personally am a 20 plus year patient after 2 very invasive back surgeries. Without medication, after progressing “through the ranks” of ALL other non “drug” treatments and non opioid medication treatment, medication has saved my life for over 20 years, until now. It is DOCUMENTED through 2 different pain management specialists.

    My wife became disabled, about 10 years ago with fibromyalgia and lymes disease. Prior to, she was vibrant, athletic, employed “full time” and managed to become a CHAMPION body builder, on the side. She has never even seen a steroid enhancing drug that would assist in the body building process. She did it with eating the proper food, and after extensively reading, how to do it. She was already a Mother of two, and I am still proud of her.

    We both had a realistic view of longevity with personal health, and acted upon that, accordingly. We still do. Since the “mis-guided-line policy “adoption” in this state, we have both sought natural, organic pain relief with no success. We both can be empathetic with Angelika as there seems to be little hope of the policy makers in regard to sufficient pain management trough opiate based medication prescribed by our physicians in an adequate dose to remain self reliant. I, may very well be on a “watch” list in my state for repeated contact with the medical board. I do not really care.

    A pain patient is being “penalized” for the “possibility” that we MAY misuse our medication’ Even with 20 years of examination, evaluation, “screening”, documented beneficial use and all other methods of pain management, failure. . Surely goodness and mercy shall follow me, all the days of “our” lives.

  29. Louis Ogden at 12:21 pm

    Woops, the link did not come thru. Google Dr. Forest Tennant and you will find the webinar on the first google page.

  30. Louis Ogden at 12:18 pm

    Angelika, I’m touched by your story. I personally have a different ‘post inflammatory’ pain disease as well as spine problems caused by a malfunction in the flow of spinal fluid. Please see . My doctor recorded a webinar on Ehlers-Danlos Syndrome and treats this condition with some new strategies with some success. I wish you the best!
    Louis

  31. cindy deim at 11:51 am

    I’m so sorry for your pain. I am also a pain patient. I think all we can do is write out Congress people, the CDC, inundate the government with stories just like these. I wrote my story down make copies and send them to everyone I can think of. I hope you don’t give up. Don’t let them win!

  32. Jim at 10:50 am

    Thank you Angelika for your story. I am in the same boat and do not want to rock that boat by asking for a strengthening in my meds or increase. My primary (internal medicine) took over after my PM group I was with decided that they were no longer going to prescribe opiod meds, but still required at least once a year, a series of steroid injections, which (as a diabetic) pushed my blood sugar over 400 for at least 3 days, causing me to seek insulin rescue shots at the E.R., once even admitted to the hospital, costing me even more.
    My life in chronic pain has not been great, but with my meds, it is tolerable, even good at times, allowing me to do things I could never do without my meds.
    Thanks again Angelika. We need people to listen and side with us.

  33. Maggi at 10:37 am

    Living in chronic untreated pain for far too long now. I see no future only each day as it comes in intolerable non stop agony, there is not an area of my body that isn’t having pain at one time or another throughout the day. I don’t qualify for pain pill relief because I was black listed by a pain doctor that took a year and a half to find and I had to pass a psychiatric interview to be accepted. I saw her once a month for about a year, her being the only pain management prescriber in Spokane accepting my state insurance and taking patients. My last appointment her (new) staff was extremely rude and hurting my arm with the blood pressure cuff that kept pumping up higher and higher till my arm was dark red. I asked to have it removed and they said you just wait I couldn’t and removed it. When I got in to see the prescriber I informed her in tears how awful I was treated and she apologized and everything went fine I got my prescription and left. Only later did I learn I had been discharged and a note put in my permanent medical record that i was a behavioral problem and had failed my last drug test. None of which was true. I went thru the proper channels to file a complaint which included witnesses and physical evidence. My response came two weeks later the investigation revealed no wrong doing had been found. I’m 50 I act relatively young I have a youthful spirit but I am a prisoner to my shell. I hurt so bad all the time that I have considered ending it on too many occasions. I have no quality of life anymore. The way things have been going with the war on opioids I don’t hold out any hope for one day getting pain relief. The whole pain management system needs to be dismantled. Doctors are losing their effectiveness having their hands tied in who they can and cannot treat. Being treated like a drug addict having to give urine test and bring my pills in to be counted because of the very people who misused or abused their drugs, and died. Profiling everybody as opioid addicts and treating us like criminals for just wanting some quality of life is threatening the lives of those who are still fortunate to get narcotic prescribed pain relief. I don’t want to live like this it’s torture physically and psychologically. Constant pain has a way of slowly driving you insane. It screams for death.

  34. Kim Leonoudakis at 10:34 am

    Your are so right. I wish these people who sit in a room and judge us and decide whether or not we deserve pain meds could live in our shoes for a month. Not one day. A month! They have no clue about what it’s like to have chronic pain. Put some pain patients on the deciding committees about the “opioid epidemic”. #WEARENOTADDICTS

  35. Janet Komanchuk at 9:37 am

    Angelika, Thank you for sharing your story. I found that in spite of the numerous and varied medical treatments, prescriptions and holistic methods I tried, the pain and other symptoms of fibromyalgia just kept getting worse. Like so many others, I was desperate and fearful of what the future held. Unable to sleep, barely able to move, and in horrid pain I was seriously thinking about going to a nursing home to spend what I was certain would be my final days. It was then I received an unexpected phone call from my uncle who suggested I try the unique mind/body/spirit wellness work that helped him, his family and friends with a wide variety of issues. It took work, a change of lifestyle, and people who were able to help me recognize and resolve the many unresolved issues in my life that were helping to make me so very ill, but I am in remission and forever grateful for all the help I received.

  36. Joe Newman at 9:15 am

    What the anti opioid zealots do not tell the public is that most of the deaths they report from opioids are caused by unregulated street drugs.

    They also do not convey that opioids only give severe, chronic pain sufferers a few hours in which to do their necessary tasks. They do not give us any “high” at all.

    They neglect to admit that taking these last defenses against horrible, crippling pain away from us is the same as pointing a gun at our heads and pulling the trigger.

    Not one of these zealots could live with the pain we tolerate for more than a few days.

    So for the sake of the sufferers which could become anyone at any time please stop lying to the public and exercise mercy toward those who need it.

  37. Michelle Garcia at 9:03 am

    Angelina Byczkowski, I feel exactly as you stated in your message! Your comment was right on and the hope for us to continue life without our medication would be fatal. I suffer from arachnoditis, stenosis, 5 herniated discs, extreme muscle spasms, sciatica, permanent weak left leg and numb right foot, unable to walk and use electric scooter to get around on the days that I can move and the list goes on. I use to have a career in law enforcement with a college degree and was very athletic until I was permanently injured on the job! Do to mistakes made by my workers comp doctors,(7 surgeries, many pain injections, etc) and delay of treatment, I am permanently disabled with permanent nerve damage that is not reversible. Without my pain medication I too am afraid that I will take matters in my own hands. I am 55 years old.♡♡

  38. Cindy Perlin, LCSW at 7:59 am

    Angelika, I am so sorry about your medical condition and your very realistic fears about being cut off someday from your opioids. I think the federal government’s terrorizing of doctors so that they fear loss of licensure or imprisonment if they continue to prescribe opioids, which has led many to cut their patients off from medication they depend on, is unconscionable. You are correct that the evidence available on long term opioid use is limited. Much of what is available is on Workers Compensation recipients and not patients with genetic diseases or other complex pain conditions. I also confess to not being familiar with your condition. However, I also think that many patients who think they have tried everything for their pain condition miss therapies that may be helpful. That’s why I wrote my book, The Truth About Chronic Pain Treatments: The Best and Worst Strategies for Becoming Pain Free. I would be glad to send you a free copy if you email me your address to cperlin@nycap.rr.com.

  39. Dinah Gray (use 1st name only please) at 7:50 am

    Thank you so much for sharing your story/journey Angelika. My mother, sister, & I have done 21 years of research about my chronic pain diseases/conditions (primary being adhesive arachnoiditis among several others). We have communicated with doctors, researchers, & fellow sufferers from around the world. Within the last 2 years, I have been dropped as a patient by my primary care dr of 18 years & my pain management dr of 20 years strictly because of the so-called opioid crisis & the new guidelines by the CDC & FDA. It took months for me to find a new primary care dr & pain management dr who agreed to accept me as a patient (although when I went to my regular 3 month appt w/ my primary care doc the last week of April, I was told that he no longer worked there so they had an FNP who saw me. She stated that she was only filling in for a new FNP that would be taking over in 3 weeks! So as of now, I guess I have no primary care doc!) It is a proven fact, that after trying more tests, procedures, & surgeries than I can count, the only thing that helps me & gives any relief or any quality of life (as limited as it is) is medication. Strong meds at high dosages which I was stable on for almost 20 yrs!
    I just wanted to say that your artlcle on the alledged opioid crisis is one of the best I have read!! All of your points are spot on, & I am thankful/grateful for you taking your limited time & energy to write it & put it out there in a public forum! I will be sharing it with others as we continue to try to raise awareness about chronic pain & about this ridiculous, alledged “opioid crisis”. Wishing you the best as we continue to fight the good fight!

  40. michael t wrenn at 7:36 am

    I to am very concerned.They will soon be going after Benzodiazepines as well….My question is who exactly do we contact to get our voices heard.Who is going to be the Voice for us..PS….The Dr’s that are dismissing patients and withholding their pain meds are going to start spending a lot of time in courtrooms when people start dying of withdrawal…How can we do something..anything to fight back.Thank you.M.T.W.

  41. Debbie at 6:58 am

    Angelica, everything in your commentary is so true. They talk about opioids and always add heroin into the commentary as if prescribed legitimate use of opioids is in the same category. This makes me angry because if legitimate pain relief is denied people will have to get pain relief illegitimately. If this happens this country will see a bigger rise in Herion use. I love my country and feel so blessed that both sets of my Grandparents were so brave to emigrate here so long ago but the greatest nation on earth should not let their people suffer pain. God bless you Angelika and my fellow readers.

  42. J Wehrfritz at 6:24 am

    Ms Byczkowski’s words resonated deeply with me. Without going too deeply into my own pain issues (4 neck surgeries, and now all my thoracic discs are either fully ruptured or bulging), I know too well the issues of chronic pain.
    After years of being a patient with a Pain Medicine group, I nearly died with their mis-diagnosis of my pain. I started to develop abdominal pain and started losing weight. THERE IS A MEDICAL STIGMA toward chronic pain patients, and on top of THAT, I’m a RN so any input on my part was considered “self-diagnosis”.
    Over a period of a year I went from weighing around 130 pounds down to 94 pounds. I kept asking my doctor(s), “Could this pain in my abdomen possibly be GI?”, but my inquiries were met with the implied condescending attitude that I “just wanted MORE opioids”, and was wasting away due to them. My Pain Medicine D.O. even told me, “I AM A NERVE SPECIALIST, AND IM TELLING YOU YOUR PAIN IS REFERRED PAIN from the problems in your thoracic back.” More (extremely painful) EPIDURALS,(one which resulted in a hematoma a in my epidural space), more Fentanyl patches, more dismissal of my ever-escalating pain.
    My abdominal pain turned into severe nausea: at one point I couldn’t even speak due to “dry heaves” — I carried my waste basket with me everywhere so that I could throw up into it. I developed foul-smelling drainage from my navel, which was treated by yet another doctor as “an infection”…
    Everything “came to a head” one Friday afternoon when my husband got home from work and found me wild-eyed and telling him to HIDE THE GUN because “I can’t take this anymore!” Yes. THAT CLOSE. He phoned my Pain Medicine doctor who said she would meet us at the E.R. She didn’t, even though the hospital was right across the street from her office and it was still early enough in the day she could have easily done so. Even my doctor friends (one who is actually a GI specialist) saw me (unofficially) in the E.R. and agreed this was NOT GI, but my dependence on opioids…
    The E.R. drew some lab-work, gave me an injection of Dilaudid, and sent me home, and instructions to follow up with my Pain Medicine doctor on Monday, which I did.
    At my appointment, my doctor seemed “put upon” because she had to work me into their office schedule. She did, however ask (in a flippant, condescending way) if the E.R. had done any lab work, and I replied they had. So she left the exam room to check my labs, and returned to the exam room looking pale and frightened: The E.R. had done a tox-screen, saw I was taking (PRESCRIBED) opioids, but completely neglected to look at my chem-scan. Turns out I had fulminate PANCREATITIS, which was eventually attributed to my gallbladder, which had become so “rotten” (gangrenous) I had developed a fistula: the cause of the draining from my navel.
    Had gallbladder removed (surgeon said he couldn’t believe I hadn’t become SEPTIC since it was the worst/sickest gallbladder he’d ever seen. Besides the pancreatitis, it had also damaged my liver.
    As you might imagine, I was very ANGRY my GI symptoms had been DISMISSED: The E.R. had read my tox-screen and just ASSUMED I was drug-seeking. “Give her Dilaudid and send her home…”
    Recovering from my gallbladder surgery, I made a decision I WOULD NOT seek anymore opioid treatment; I knew I was going to hurt while recovering, so I thought “just bare with it, and take over the counter sleep aids for the opioid withdrawal symptoms. I did it. After my “rotten” gallbladder was gone, I had less and less pain. Don’t get me wrong; I STILL have chronic pain from back, but I know my physical limitations, and I COPE. By the way, I USED to be a Black-Diamond skier, kite-surfer, and enjoyed lots of enjoyable physical activities. My life was INDEED better when I could take an opioid analgesic to get some respite at times, but now, at age 60, and with the BIAS toward chronic pain patients (as evidenced by my E.R. visit…) I’m afraid if I developed signs of an MI (while on any opioids), I would once again get a Tox-screen and be sent away, and possibly die.
    Chronic pain changes the brain… A sense of hopelessness becomes the norm. I HEAR the author. I understand.
    What I DON’T understand is the lack of compassion for chronic pain patients by denying them the opioids which could make their lives “better”. This “war on opioids” will, in my opinion, lead to seeking black-market relief from questionable (read: dangerous) sources, suicides from hopelessness, and dependence on illegal drugs.
    And all the while, ANYONE can go buy as much ALCOHOL as they want, get into brawls, car-accidents, and develop liver disease.
    So OBVIOUS something is WRONG with this picture. I take Tylenol and get massages, which help more than ANY of the epidural steroid injections, facet-injections, and the HUGE copays which come with both. It’s all a heartless, paranoid SHAM, in my opinion…
    P.S. The pancreatitis left me with a chronic cyst in my pancreas. I used to get “tumor-markers” checked for it every 6 months. I don’t anymore…
    I have no faith or hope of receiving anything to alleviate pain, and so, like the author, I may someday have to take the situation “into my own hands”…

  43. Danny at 5:46 am

    Ditto!! This exceptionally well-written article is my life & outlook, almost word-for-word. Here are the few, minor differences between Ms. Byczkowski and me: 1) I’m 56-years old versus 60; 2) My life of intractable pain began 26+ years ago – she writes 20+ years (see how insignificant the differences are?!); 3) Her pain is the result of a genetic disorder, while mine is the result of a severe electrical accident (I use usually use “electrocuted” because it did technically kill me, but those closest to me are uncomfortable with that word); 4) Finally, I was fortunate enough to have parents who could financially assist their 29-33 year old son with the tremendous expenses associated with a) searching for a cure, which took me from my home in Georgia to Atlanta, the Mayo Clinic in Jacksonville, FL, and the U. of Chicago, where the world’s leading experts on electrical injury are located and b) the absurd costs incurred by 2 law firms pursuing a lawsuit against the manufacturer of the malfunctioning pump that actually caused the accident – the lawyers took 45% of the resulting settlement, which was nowhere close to, say, the woman who got $1M from McDonald’s for hot coffee.

    Had my accident occurred 5 years later, that settlement most likely would’ve been 10× the amount. See, starting in 1991 (w/ the accident) and ending in 1995 (w/ the settlement), a great number of developments occurred that could’ve altered things. A couple of examples: the common use of a thing called the Internet in most every home and the finalization of the study of electrical injury at the U. of Chicago, which happened 1 year later, in 1996. All this is to point out that I, eventually, was able to pay back to my parents every penny that was spent from the day of the accident to the writing of my signature on the legal settlement papers.

    The ultimate, and by far most important point of all this is that this article is practically a word-for-word description of my life of intractable pain and its likely end. We intractable pain sufferers all have much more in common than the things that differentiate us. Thanks, Angelika! I thank you for writing “my” story. And thank you for putting into words what I fear most will cause the end of it. It’s a life of pain and agony. And it’s nothing compared to what it once was. But it is mine, ultimately. I hate that others have the power to affect how & when it ends.

  44. Bob S at 5:38 am

    There is no evidence that genocide-loving, life-hating, money-grabbing greedy politicians can be persuaded to care about their neighbors who are ill. Hatred of life can only be expressed in terms of hatred.

    The nut who shot a Congressman last week, pretended to care about people, by participating in a political drive to force people to be poorer, then claiming that this revenge scheme would somehow help those who already are too poor. Since he didn’t particularly care if he lived or died, his foolish opinion was of no value to a discussion of how to enrich the lives of everyone in the community.

    We see the same foolishness, wrapped in the disguise of concern for the alleged dangers of opioid use, coming from the lying mouths of those who want pain patients to die.

    If they truly gave a rip about making pain care safer, they would study biochemistry and biophysics ceaselessly, day and night, seeking inventions that reverse painful diseases like Ehlers-Danlos.

    Instead, they offer us death as a so-called final solution to our problems. Since they, themselves, view death as a solution, their foolish thinking is irrelevant. Wise people must openly and bravely state, that any fool who wants people to die of a disease, has no business telling those of us who want to live, just how we are to go about the business of living longer and better.

    The United States Constitution is not a suicide pact.

    The First Amendment guarantees a right not to pay a tax for exercising speech, nor to have to get a government license before speaking. That’s the true meaning of Free Speech.

    There is no legal right to babble foolishness at people and demand to be respected as if one’s foolish and harmful words, contain useful wisdom. Every fool who wants pain patients to die, deserves to be insulted in the strongest possible terms, for the foolishness of the beliefs they express to us.

  45. Bruce at 3:39 am

    Another uplifting article. Getting to the point where I don’t want to hear any of this anymore unless there’s some sort of answer attached to it. We get it. We’re going to have to kill ourselves. Especially since the head of the pain clinic I go to threatened to discharge me unless I submit to getting my bank account drained the same way you did with useless procedures revealing nothing.

  46. Denise Bault at 3:27 am

    Wonderfully well written article! Unfortunately, the subject matter is true and oh so sad!

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