My Story: Painted Into a Corner

My Story: Painted Into a Corner

By Konnie Parke

Konnie Parke

Konnie Parke

Scared, worried, anxious, and sleepless. These are only a few words which describe the emotions I’ve felt these past few days as I prepare to see my doctor, yet again, to ask to be put on low dose naltrexone (LDN).

And I think I’ve painted myself into the proverbial corner.

The pain is unrelenting. Why am I here?

The Demon Opiate

As an RN I have witnessed both professionally and personally the horrors of opiate addiction – the devastation to families, marriages and children. I am ashamed to say that after my experiences I was of the mindset that those who used opiates on a regular basis were “addicts”. Sure I had used opioids after my surgery and occasionally during 20 years of migraines, but never on a consistent basis. I hated the way they made me feel. I was terrified of them from the chaos experienced within my own family.

Then the broken leg, three years of surgeries, rehab and medical errors and finally, Complex Regional Pain Syndrome (CRPS) also known as Regional Sympathetic Dystrophy (RSD) of my left leg. Life as I had known it was at its end.

According to America RSD Hope “Complex Regional Pain Syndrome, CRPS, formerly known as RSD Reflex Sympathetic Dystrophy, is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System. The pain is characterized as constant, extremely intense, and out of proportion to the original injury.” Additionally, CRPS is ranked as the most painful form of chronic pain that exists today by the McGill Pain Index.

I underwent injections into my spinal cord. I refused anything stronger than a 5 mg. tab of oxycodone. I tried to work. I loved my job and was good at it. I would relent and take my little 5 mg. tab so I could manage through a day. I began to use a cane. I worked with my door closed because of frequent tears of pain. I had three heating pads wrapped around my leg so I could get blood to it. It was always mottled, blue and cold. I could no longer travel for my job and the strain of failure was lurking over my shoulder.

Still, I used the opiates sparingly and tried everything else that was thrown at me. Neurontin and gabapentin didn’t work, NSAIDS and Aspirin were a rare option because of previous stomach issues. I’m allergic to Acetaminophen. Cymbalta helped until I ran a fever of 104º and my urine turned dark. Tests revealed liver, kidney and colon inflammation. Even a spinal cord stimulator (SCS) did not help, nor did hours of massage therapy or the stem cell injection.

I came to understand the difference between addiction and dependence. I started taking the opiates as prescribed. I took them because they were my safest choice with the fewest side effects. I took them because they helped the pain, and my quality of life improved.

In October 2014 I walked into my PMP’s office to find a sign posted saying, “As of October 30, 2014 we will no longer prescribe oxycodone”. I was panicked! What would I do? When I saw my doctor he said, “Oh that does not pertain to you.” That was when I discovered the new scheduling and laws bound to restrict the of prescribing opioids.

Three months ago my dose was again increased for breakthrough pain. When I asked what else I could do, the Nurse Practitioner (NP) looked at me and said, “Trust me. I’ve been doing this for 20 years. I know what I’m doing.” Yes, she understood that opiates were the safest choice for me and she meant well. But HELL NO! I don’t trust a medical establishment infused with government regulation. I’ve dreaded the day when I would walk into their office and a “No Oxycodone Prescribed” sign did pertain to me.

This dread of suddenly being cut off from medications coupled with and my desire to try LDN led me to a decision I hope I will not regret. I’ve weaned myself from opiates. I did it preemptively and on my own terms.

Now, today as I await my doctor’s visit, I am recalling the past two months of sheer hell – the hell of weaning myself from opiates without advice and reliving the pain I had when first diagnosed. I don’t recommend it. I feel painted into a corner – and in my pain-filled corner I am questioning my decision. Will he prescribe LDN? Will it work? How long will I have to endure this pain? Have I set myself up for never being able to get opiates again if LDN doesn’t work? What was I thinking?

I’m waiting for the paint to dry. It seems like forever.

Konnie Parke is a 57 year old former registered nurse who suffers from CRPS. She has worked in various pediatric specialties and public health emergency preparedness. She lives in Utah.

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Authored by: Konnie Parke

There are 21 comments for this article
  1. Jean Price at 8:56 am

    Konnie…I’m a firm believer in the power of both spoken and unspoken communication. The implied message is often the loudest!! We have to be diligent about what our choice of words and our phrases may convey that wasn’t intended, especially in the current climate of persecution!! Your comment to me may have explained your feelings, but I’m can’t give you absolution to excuse it! I can chalk it up to a human mistake, but it’s very damning to those in pain who use this medication carefully and can live more fully because of it. I couldn’t quite tell if there was an apology in there or not, and if so….apology accepted/explanation noted! I just wish the article itself would have held this up in a clearer way. Unfortunately, the dangerous phrase still stands and the mindset still stands in so many who oppose our need and use of medication for pain treatment. I too have a nursing background. Yet I always viewed pain medication as an appropriate therapy, and a godsend to help people in pain! Yes, there have always been a few who tried to deceive the system to support their addictive cravings and they’ve caused disastrous impacts to others from their actions…yet the medication wasn’t at fault! It wasn’t then, and it isn’t now. Yet. when you don’t clarify this, it begs the question of why…why was it important to vilify it, and why do you not then clearly redeem it?! As nurses, we were taught to have a healthy respect for ALL medications, to know their benefits and potential harm. Many patients even thought taking pain medication was a sign of their weakness, and I think that attitude still lives, in patients and nurses. Nurses know that the amounts needed for pain relief vary greatly in patients, and pain must be clearly assessed prior to and following medication. All part of using a medication wisely and avoiding complications! I think people in pain also know this, and are highly educated about their diseases and their medications. So where’s the problem, if not in the mindset of this witch hunt that so many professional have rallied around?!! And to resolve this, we must be factual, unbiased, not use fear as an ally, and be willing to allow others the choices we might not make for ourselves. And we MUST be willing to separate the medication’s “role” from the actions of a few people who use them illegally and destructively. The only demons I see in this whole issue facing us are those of dishonesty and money driven agendas of denying something useful and substituting less effective, more expensive, often more dangerous and more invasive alternatives. We must not limit our resources by supporting this with our words or our actions!

  2. Sheldon at 7:45 am

    Horse or Human
    What if i was a prized race horse that retired because of pain that kept me from walking. Would i get pain meds if it meant i could race again? Probably so! If not and my handler had the meds i needed to be able to function and i knew it, and wouldnt give it to me, what would i do. Prob. Nothing, just suffer. What if you gave that horse a gun he could use. Do you think he would shoot his handler if it meant he could walk again with less suffering. I would say he would be looking for another handler. We as humans would either put the horse down or give it the meds. So when the human doesnt get the meds they need to walk and have part of their life back and cant be put down by another human, what does the human do with the gun? So i ask who is better off the horse that gets meds and if thats not good enough someone will put it down or the human that cant get its meds and there is noone to put him down. So lets say the only way out for the human is to put hisself down do u think that human wont make a statement about his life of suffering before he leaves. Where is the humanity and how many here would rather be the horse?

  3. Robert Ivan at 4:58 pm

    Stereotypes are what we fight along with dealing with our hour to hour survival. Regardless of how articulate you present your condition, no one who does not suffer from chronic pain can or will empathize with our condition. They have a preconceived attitude that we take opioids for fun. That we are really nothing short of some anorexic, dark circled, unshowered, unshaved (men) individuals with track marks on our arms looking for our next fix.
    How wonderful it would be to not be a slave to a small pill, or the stress and anxiety we suffer trying to have our physicians empathize with our condition.
    The CDC has bunched us up with the recreational addict and used the “One size fits all” edict. Personally I fight for moments of pain free time during a day.

  4. Terri at 3:09 pm

    I have chronic regional pain syndrome in my face. I have Ehlers Danlos Syndrome too. I have a pain addiction specialist who told me even with medications, I start out my day with a pain level of 5. My internist is great and prescribes my medications. I keep my pain guy to back him up. I am one of the few fortunate people who is not getting slammed by the CDC guidelines. I am a patient advocate and fighting for all our rights. I am so sorry with my whole heart that people are losing doctors. Hugs to you all!!

  5. Konnie Parke at 2:28 pm

    Jean. Before developing CRPS, I thought opiates were a demon and I am ashamed for it – but this opinion came from my life experiences until I developed CRPS. I’d taken care of babies withdrawing from them in the NICU. I’d seen them wreak havoc in my family.

    The heading was a reflection of my attitude prior to needing them, not to offend or mislead.

    So I ask all of you. Did you have an opinion about the use of opiates BEFORE the chronic pain started? For me, using my prior beliefs has given me a frame of reference from which to educate others who still hold them.

    I hope this helps clarify.
    Best to you Jean.

  6. Jean Price at 11:54 am

    Seriously, demon opiate? For some one in pain? When this comes from someone in pain I have to wonder…wouldn’t this be a great article to support the CDC’s stance, to help them….not us? Hmmm, I’ll have to ponder a while, and hope they don’t use it in one of their talks to congress!

  7. Geo Sims at 8:50 am

    Your prior post was approved and posted on it’s own merit.
    Threats are not necessary or appreciated – nor does it help your other comments get approved.
    While we reserve the right to review and approve comments, we are VERY liberal in approving comments on NationalPainReport.
    We are a small staff, and review comments as we’re able to.
    We thank you for your readership and understanding.

  8. Konnie Parke at 6:51 am

    Thank you for your responses to my first posting of this sort. It was an intimidating thing to do. It is hard reflect the whole picture in under 800 words.
    I hope to answer a few questions and make some clarifications with this follow up posting. First and foremost, I do not advocate weaning from medications without a health professional’s guidance.

    What I did not say was that in 2012, I was forced to take a disability from my beloved job. Also, the 5 mg. tabs of oxycodone did not hold the pain for long. As the CRPS progressed and the 24/7 pain wore me down, I needed increasing higher doses to keep the pain in check. I spent half of 2012 and all of 2013 in bed and in agony. Fentanyl was added. The SCS was placed. Still, I continued to have breakthrough pain about every 5-6 months. I felt like a dog chasing its tail.

    As a self-proclaimed “research nerd”, I started to educate my doctor on ketamine infusions and 2 yrs. ago introduced to him the use of LDN for CRPS and other conditions. I thought one or both of my docs would be excited – but the contrary. I received lectures from my PMP and my PCP as to why I should take my opiates. My PCP went on to list all of my painful medical conditions in addition to CRPS. Like many of you, I have back, old injuries, an autoimmune disease and I’ve had fibromyalgia since I was 28. I couldn’t believe what I was hearing. I knew I would get no “weaning” help from either doctor!

    The final straw came as described in my post – another dose increase from an NP because my PMP had me “managed” and didn’t see me anymore. Another blind eye turned to my research on LDN, and a “trust me” attached. I’m an RN for crying out loud! I felt like I was being patted on the head and being told to take my medicine like a good little girl. Shesh. I’m a pain patient, not stupid. It was humiliating. I’d had enough! I decided to wean. Perhaps it was fear or denial. Perhaps I was mad.

    Or perhaps I was being a little passive-aggressive.

    I’d determined that if my doctor was going to take me serious, I was going to have to DO something serious to get his attention. By weaning from opiates he would see my commitment to trying LDN and he might be taken seriously as I was.

    Now, how to do it. I tried an internet search on WebMD where I was inundated with sites advertising rehab centers. Other sites advising street drug users how to get by until they could get their next “fix”. RICHARD, I wish I would have had your book! I called my doc’s office. No reply. I called a pharmacist. They said “call your doctor”.

    So like DOUG, I started a slow wean. The fentanyl was the hardest. I was on 100 mcgs every 72 hours. I could not cut the patch so I went from all to nothing. I used the oxycodone to help with the weaning of fentanyl, then weaned from the oxycodone a little at a time over the next two months.

    I helped manage the pain through a biofeedback technique I’d found quite by accident called “Tapping”.

    And finally my sort-of scientific reasoning.
    Dr. Pradeep Chopra’s research… Keep reading. I’ll take the liberty of quoting from it.

    “The Central Nervous system (CNS) is made up of nerves and cells called glia. The glias make up about 80% of the CNS while the nerves make up about 20%. The function of the glia is to provide immune protection and host defense to the CNS. Under normal conditions the glia remain in an inactivate state. They become activated readily in response to infection or injury. The most important change that happens during inflammation of the brain and spinal cord (Central Nervous System) is activation of glia cells.

    When glia cells are activated they trigger the release of certain chemicals known as pro-inflammatory and neurotoxic factors. These factors include several cytokines … In painful conditions such as Complex regional pain) and neuropathic pain, damage to the peripheral nerves shifts the glia to an activated state within the spinal cord.

    …Glia are activated by trauma, injury, infection, opioids. When activated, glia release pro-inflammatory and neurotoxic factors (cytokines).”

    See the word opioids? Was there a possibility that taking opioids added to the release of cytokines? Was THIS why I was chasing my tail? If opioids activated cytokines, then by taking opioids, theoretically I was making my condition worse! (Those scientists out there – please be kind. I’m just explaining my reasoning.)

    Dr. Chopra’s research also states the following:
    “Drugs that block the effect of opioids (morphine) may help prevent activation of glia. Such drugs are naltrexone and naloxone. Low dose naltrexone (hence, LDN) may inhibit the activation of glia.”

    In essence, instead of activating more glia by taking opiates, I want to calm them down.
    Yes, ELLIE. Naltrexone otherwise known as Narcan, binds to the opiate receptors in our cells and reverses the effects of opiates. It has saved many lives.

    Taking LDN means having a pharmacist with extended education take a 50mg tablet, crushing it, mixing it with a filler and placing the powder in capsules to equal 4.5 mg. each.

    I’m fighting for my right to be an active participant in my own health care and not be lectured because I dare to go against the status quo. I realize that in Dr. Chopra’s article the word “may” is used a lot. But I was told the expensive, painful injections “may” help. I was told the Cymbalta “may” help – and I now have permanent liver damage. So I’m willing to take the chance. I’m willing to take the risk, especially if others may benefit from it.

    Oh BTW: after a very lively discussion with my doctor, I am on day 4 of my 4.5 mg LDN!

    Also BARB: I felt like ants were biting me for 3 weeks! Not fun. Hope the pump gives you some relief.

    JEANIE: Thank you for the clarification. I actually took Gralise, a slow release form of gabapentin. I should have been more careful.

    If I never again use an opiate I will advocate for those whose lives are improved by them. I’m outraged by what is happening to those in chronic pain! I was (and am) there. I know how it feels to have the relief provided by opiates and the pain of not having them. I will use them again if need arise and the LDN does not work.

  9. Angel at 6:09 am

    I have leukemia, chronic leukemia. I spent 14 years without a proper diagnosis. Fibro was what was diagnosed and I was blacklisted called an addict because of my persistent push for pain relief. It wasn’t until I went into labor and the doctor went to give me an epidural they found I had 4 breaks in my spine and 2 in my left hip. This was me walking around in severe pain called an addict my bones breaking from the inside. To this day pain control is still the most worrisome part of my care. Patients shouldn’t be in fear of their providers when they head to the doctor for care. I highly recommend medical marijuana to any and every patient who’s providers allow it’s use. In 1 month it’s given me much function back

  10. Maria Molaro at 1:40 am

    Post my comments or I’m coming after you too

  11. Maria Molaro at 1:33 am

    What can we do, as a community, to stop the madness of pain patients not being served properly…disregarded, and judged into a position of no options in the end. So many of us are at our wits end and more importantly, our pain end. Is there anything “we” can do as a group?…before more of us think the un-thinkable? I am amongst you in pain, in disregard, in disgusted people… I promised myself 1 more year of pain and the monthly cycle that entails. …I will try my best. What can we do as a whole community? Blog is not enough!

  12. Barb at 6:40 pm

    Let me tell you the same story but the real truth. My doctor did cut me off my pain meds one day cold turkey because of the US Government. I was on methadone, dilaudid,and 100mcg of Fentenyl patch every 3 days. I was sent home with 3 pages of pain management doctors names and a good luck!
    I not only had withdrawal symptoms but the worst pain in my life. Dr. in er wouldn’t give me pain medication because they thaught I was a druggy looking for a fix instead of a person that was in so much pain I wanted to die. I finally talked to my Dr that cold turkey me and he sent me to a specialist and got me in quickly and got me on 50 mcg of Fentenyl and 50 mg of dilauldid. I was still seeing bugs in bed, seeing things crawling on walls, but the worst thing, was the PAIN…and not the withdrawal symptoms. I’m not an addict. I am a CHRONIC PAIN SUFFERING PEON. PERIOD. Today, my spinal specialist will be doing surgery, then I will be on a Fentenyl pain pump by the end of the year. So people out there suffering, keep fighting for yourself, there is help you just have to keep looking to you find that right caring doctor. God bless.

  13. Jeanie Beal at 2:51 pm

    Interesting post. My only comment is that Neurotin is the brand name for gabapentin.

  14. M. at 10:14 am

    I have CRPS & my story is just like yours. I did have a neuro try low dose naltrexone on me about 4 years ago but he forgot to tell me all opiates had to be out of my system first. I was in such extreme pain after taking the LDN after only 24 hrs off opiates I thought I was truly dying. Ended up in the E.R. & there was no way they would understand my disease or the LDN treatment. Turns out I experienced “withdrawal pain times three” as my neurologist told me. I am now treated by a PC only. I have a terrible feeling she will stop my meds. CRPS untreated is living hell. I have told my mother if anything happens to me she should sue for wrongful death and intentional infliction of emotional distress. It’s time chronic pain patients were on the other side of the “fear” fence.

  15. Jill Jensen at 9:10 am

    Please provide an update after you have met with your doctor.

  16. Richard A. Lawhern, Ph.D. at 8:55 am

    Konnie — yours is a brave story. Could you add to it please? For people who feel that they want to wean themselves from opiates, can you recommend resources that can help? one book that I am aware of in a related area is by Dr. Peter Breggin, MD: “Psychiatric Drug Withdrawal – A Guide for Prescribers, Therapists, Patients and Their Families.” (Springer Publishing, 2013, available on Amazon)

    In a spirit of fair disclosure, I have corresponded occasionally with Dr. Breggin for a couple of years, and twice been invited onto his “Doctor Peter Breggin Hour” on the Progressive Radio Network. But I have no financial or professional interest in the book.

  17. Ellie at 8:40 am

    I am not that familiar withLDN were u going on it for pain, all I knw abt narcan is that it takes some opiates out of yur system & can restore breathing. Not sure why u wanted to go on it for pain. As far as being afraid of them discontinuing your opiate as u said u only took 5mg which is certainly not enough to cover your type of pain. Good luck but possibly fear got ahead of you. Let us know how things work out for you. I wish u a life of happiness without fear.

  18. Michelle at 8:22 am

    Sorry for your pain..one question though..if your “allergic” to acetonenophen, HOW did you take the percocet when the ingredients of percocet, are oxycodone AND acetaminophen???? Just try a new Dr hun. I’ve been dealing with RSD, Fibro and two herniated discs at l4l5 l5 s1 and the ONLY thing that’s worked are high dose around the clock opiate therapy. I no longer fret about the stigma associated with being on oxycontin…it is what it is and if its going to make my life a bit more comfortable with my pain levels down to a 3-4 then so be it! I wish you the BEST…..Gentle Hugs to you!

  19. MARTHA ARNTSON at 7:08 am

    Konnie, first of all I need to say this: Thank you for your wonderful article and you are such a beautiful woman! I too have “painted myself into a corner” so to speak, with my PM physicians. When they called me for a “random pill count” in March, a week before my regular scheduled monthly appointment, I brought what I had in my locked Med Bag. Not thinking about the 20 I keep put aside so that I never run out of it. When I came in the next week for my regular visit, my PM nurse immediately started to loudly reprimand me for the pill count from the week before. I was in shock. She went so far as to call the nurse in that counted my pills, and that I TOLD AT THAT TIME that I forgot to throw the 20+ into the locked bag. They both confronted me on this issue. I stated I told her I forgot them, she continued to harass me loudly and told me right then and there “I will not prescribe anymore percocet”. Done. She gave me a prescription for some different muscle relaxers, (which don’t help much) and upped the Butrans Patches to 20 mcg. They also don’t help that much. I was at a loss as to what to do. She accused me, she had me in tears, she basically wouldn’t even look at me. She never asked for my Butrans patch count at all. I’ve been seeing them for about 3 years, she claims it’s too long on Percocet. But, with all the stuff I’ve had to go through medically with other serious issues with my health, I could not have new MRI’s done (cardiac stent prevented those), a hysterectomy, multiple Vulva lesions leading to multiple very painful surgeries. Being that I tell all my doctors and surgeons that I am in a Pain Management Program, I am left to the whim of my Pain physician nurse to plan my pain control. That did not pan out at all for me. She never would increase the amount nor dose, even though I went through horrible pain with the hysterectomy. I see how you are being proactive with your pain also. I did the same. I researched now for 6 months what to do BEFORE they cut you off any medications such as percocet. Have you tried Suboxone? I have learned that that is just about the only solution to being cut off from opiates leading to withdrawal symptoms. I would love to go back to early 2015 and have the good relationship I had with my PM nurse. She WAS fantastic, caring and always willing to listen. NOW? A huge change in not only the practice I go to but HERSELF! She must be under the gun from the DEA/CDC new guidelines and feels her license (new as of 2014) would be under scrutiny, that is the only thing I can think of. I am taking charge of my medical conditions now, I will no longer be treated like a street junkie by someone who is not even taking the time to listen to my explanations of particular things I think are important between doctor (nurse) and patient. Let us all know how your visit goes? I will definitely be following you! Thanks again for the great post!

  20. Bob Schubring at 5:25 am

    What Konnie describes is a problem called Denial. We humans like to imagine that we are immune to illness and death. We mock people who show fear. There is nothing to fear but fear itself…was a famous Denialist line. The hard reality is that we CAN get sick and we WILL die. None of us ever escape that. Finding joy in life, requires us to accept our limitations and then adapt to them.

    So why do some folks mock the sick? What purpose is served, by pretending that Addicts simply made a bad choice?

    Addictionology, oddly, provides us insight. The very same trick of Denial, that the problem drinker uses, to stagger out to his auto and weave his way home or to jail by injuring somebody, is the process that’s at work, when we pretend that sick people aren’t really sick.

    The sort of meanness that leads otherwise-reasonable people, to force others to suffer more pain, is the same meanness that puts thousands of victims of drunk driving accidents in the grave and disables thousands more. Denying the possibility of sickness, gives us the thrill of imagining we are better than others. And it comes at a cost. Denying a truth, means living a falsehood.

    I thank Konnie for sharing her troubles. She’s discovered an unpleasant truth about medical professionals. Even some professionals engage in Denial. When they do, they harm people.

    The truth sometimes hurts. If we learn from the truth, the pain of learning it, stops.

    The pain of continuing a denial, goes on forever.

    It’s why I invite people to speak the truth and set themselves free.

  21. Doug at 4:49 am

    I really hope your choice of weaning yourself off of you low oxicodone to try LDN is successful. Like you I also hated the way that my hydrocodone/ opioid medications made me feel when I first started my long miserable journey into the world of chronic pain.

    My pain stems from multiple spinal injuries that eventually blossomed into CRPS, RSD, plus I diagnosed with fibromyalgia 6 years ago. All this combined with Diabetes and the nerve pain that’s associated with it makes my life a constant 24/7/365 filled with aching and stabbing pain. I fear every day that eventually the government will cause the denial of the medications that have been proven to work for me.

    My 10 mg 325 hydrocodone medications have been a stable part of my life for the past 5 years. At one time after my 5th failed surgery, I was prescribed 1 to 2 tablets every 4 hours or as needed. Of course, this was too much as far as I was concerned so the as needed ended up only being 1 tablet every 4 hours after my scars healed. Then after the inflammation eased, I again reduced my dosage to 1 every 6 to 8 hours and that’s what it is to this day.

    What I’m saying is that I voluntarily had my doctors lower my dosage without intervention from the government. Now once every 2 months I cut my dose in half for 7 to ten days. I do this so that I will not need to have it increased in the future but I have not yet been able to stop talking my medications all together. I am willing to suffer more sometimes but not constantly.

    Know as far as the opioid epidemic goes, I agree that there is a serious problem throughout the United States, and I believe that the chronic pain community is willing to help to solve or communicate the dangers of recreational use of opiate medications, I know that I would. But taking these medications away from the suffering is not the solution to this growing problem, education and treatment is.

    So many of us in the chronic pain community have been forced into retirement by our injuries and or diseases. A lot of us wish every day that we could still contribute to society. This is why I think that instead of causing more pain and suffering to people with chronic pain, I think that it would serve in the government’s favor to recruit those of us willing to help to consult with the addicted and help to educate the public on the dangers of misusing any controlled substance.