The forgotten population in this opiate epidemic

by Liz Darnell

Note from Anne Moss: There is a population suffering a lot of pain and swept up in this opiate epidemic, made to feel like they are doctor shopping for prescription pain mediations when they are seeking relief from pain from chronic disease. Further, this population is being left on their own with few resources to help getting detoxed and finding alternate pain management strategies. So I’m presenting this side of the epidemic, too. 

Forced tapered again.

I was diagnosed with Transverse Myelitis and Syringomyelia in 2008, and MS in 2010. First pain management doctor I went to thought it would be a good idea to take me off  all medications at one time.

I spent a month in the fetal position.

The second pain management doc I went to was wonderful. Until the past year or so when he was pressured into taking patients off opioids. He tapered me once and I did well.

Then all of a sudden I was told “long-term narcotics and opioids have been proven to be bad for you. You must come off.” And so the withdrawal began, again. I was coming off of Dilaudid which I had been on for many years. Here is an excerpt from my journal from days two and three.

My body has felt all kinds of pain and incredible hunger for something to stop it. I stare at the pill bottle and want the chronic pain to die. I mean, after all, he wrote me an extra prescription. Oh wait, I tore that up in anger. I won’t grab that pill as I would have to start over.

I spend a lot of time in the rest room. I am feeling cold on the outside and feeling searing pain, shaking and overheating on the inside. My anxiety level is off the charts. I am grinding my teeth. Time moves so slowly and my mind is racing. I literally rock back and forth all day.

This is just the beginning. Can I accomplish this? My will is strong, but is my body?

I’m not addicted, it was prescribed. We can call it anything we want, but the withdrawal is still the same. I have had a great relationship with my pain management  doctor. He promised to diminish my pain, and he did. Now, my pain has been forced back into reality and I feel abandoned.

I have taken it upon myself to taper myself off the other meds I was/am taking. I would rather do it myself than have them ripped from me all at once and suffer unbearable pain in addition to what I already suffer from.

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8 thoughts on “The forgotten population in this opiate epidemic”

  1. Tammy, you are absolutely right. Pain mgmt is to help manage some of the pain. Not all. When it’s taken away, it’s “back to bed” and a miserable way to live. Right now I am petrified as the pain is returning and I don’t want to find ways to self medicate. I’m not sure what I am going to do but I will be pro active. I’m letting my neurologist know if this and even my family practitioner. If they won’t help…we’ll i just don’t know. Chronic pain patients are being put in a terrible, horrifying position with no merit. I hope you are doing well and I sincerely appreciate your thoughts and thoughtfulness! ❤️

  2. Anne, Tammy, Liz, me, to all of us who have been effected by the “opioid epidemic”. I feel we need to recognize the difference between “addiction” and “dependence”. Pain patients, like myself, will go through withdrawal after pain medication is withdrawn but will not experience the uncontrollable drug seeking behavior that identifies addition. Of course some pain patients may become addicted, but many, like myself, would love to go without the opioids as they come with unfortunate side effects that I could sincerely do without. I would have to taper off as my body is dependent on the drug but, as I do not get the “high” from opioids that make them so attractive to some, I would not seek them out illegally. But, here is the rub, living with constant, life altering pain is, in all truth, hardly living at all. Forcing legitimate pain patients to do without their drugs will only add to the suicide rate. If only 3% of opioid overdoses last year were legitimate pain patients under the care of a pain specialist how can the rate of suicides not greatly surpass that if patients are deprived of their medication? As it is the bar gets higher and the hoops get smaller every time new restrictions are put on beleaguered pain doctors and demonized patients, punishing those who are at the bottom of the totem pole of the “opioid epidemic”. The poor soul afflicted by horrible, unending pain, such pain that renders holding a child or loving a husband out of the question… serious depression comes hard on the heels of pain like that. I in no way wish to lessen the trials of others. I only raise my voice in the hope that it may be heard and that a legion of bereft pain patients does not add to the number of internet hits for “How to Hang Yourself.”

    1. There really are some thoughtful comments here on this topic. You guys have helped me and others understand the other victims of this epidemic and shed light on the issue. I’m so glad I asked Liz to write this and she agreed to put herself out there to do it. You bring up a good point about the suicide rate. Those who suffer chronic pain are at higher risk for suicide. Studies have shown that.

  3. Thank you Tammy for your thoughts and understanding. I would also love to hear from a doctor or a pharmacist. Would be very interesting as many pain med docs are running scared. I am continuing my journey of coming off one thing at a time. It is not pleasant but I feel at this point it is necessary for me. Thank you again for posting and thank you Anne for allowing me to share.

  4. Anne thank you for being brave enough to present this side of the ‘problem’. Thank you Liz for being vulnerable enough and real enough to share with the world that not everyone is a drug addict trying to write and fill stolen prescriptions.

    Thank you for Reminding the Public that Most people on these medications were put on this because of a chronic condition and no other physical therapy, medications or anything else could relieve it. And because a doctor put them on these medications. Then suddenly one after another are ‘evil’ in the eyes of the government and patients are pulled off and forced to ‘deal’ with it. It is so unfairly represented and I so appreciate your approach and real telling of this side.

    It does anger me (if you could not tell) that those who are on the medications are presented as the ‘bad guy’ and made to ‘feel’ like drug addicts. To the point of calling their pharmacies each month prior to filling to see if they can even get the medication in stock and if not having to call around to all other pharmacies. Insurances are also part of the blame here as they no longer want to pay fully in many cases and this leaves pharmacies to either lie to the patient and say they can no longer get it in stock (because legally they cannot ‘turn them away’) or forcing the patient to make ‘back room deals’ of paying the difference (also not allowable) of hundreds of dollars just to get their correctly prescribed medications. This subject has many facets to it and would be interesting to explore from a doctor’s view (pain management), pharmacy and even insurance view – wouldn’t it? Patients are no longer in as much control over their care in this Country. It is unfortunate and I hope that articles like this one can help to make a difference in some way. If nothing else than educate those who have no idea why people have to take them and then the experience they are forced into by being pulled off of them. Thank you again for publishing this article.

    1. Tammy – I know it’s frustrating to be painted something you are not and I appreciate your commenting. You may not be aware of this but using the term “drug addict” is a derogatory term since they, too, suffer from a chronic illness albeit one that is different and effects their behavior negatively. Not to ‘word sham’e you because it’s a common term and given the stigma and treatment of that population, it’s widespread. So I’m just asking that maybe we phrase it as someone suffering from addiction or substance use disorder (SUD).

      I try to fairly represent all sides of both the opiate and suicide epidemic here so I hope you don’t mind my encouraging mutual respect. I know those of us who’ve lost someone to this epidemic are not always kind or respectful to chronic pain sufferers, either, insinuating that you just need to “tough it out” when we’ve not lived a day in your shoes of never ending chronic pain. That’s why I chose to offer the other point of view. Because I think chronic pain deeply effects quality of life and we seriously need to find solutions of managing both expectations and the pain.

      1. Anne – thank you for your ‘loving education’, as I certainly did not intend to offend. I know that addiction is a chronic condition as well and appreciate the reminder. My use of the term, actually magnifies, for us both, why the ‘term’ is so poorly used in our society and IS a derogatory term. I simply meant to paint a ‘word picture’ of how negatively the doctors, pharmacies and insurance companies are beginning to treat chronic sufferers by ‘labeling’ them in these terms as well. How ironic, isn’t it, as they were (in most cases) the ones who initiated the treatment & came up with the very solution they are now ripping away from many chronic sufferers. Often without any alternative treatment.

        I appreciate your bravery and willingness to bare the ‘real’ you all while helping to save the lives of others. And yet while in your pain of grief (which I cannot even imagine), you willingly share the ‘other side’ of the crisis as well. In doing so, you help to reveal how patients – who are properly prescribed – continue to get pulled of them.

        I completely relate to Liz and her description of the days she spent in bed rocking – unless you have been in that place you cannot imagine it. I spent months, mostly in the fetal position, (prior to receiving help), while not being able to allow my children to touch me (they were only 3, 7 & 9 at that time), because just a touch sent more pain coursing through open nerve endings throughout my body. I would have spent most of my life in bed this way if not for a doctor a finding the right mixture of medications to bring some relief. You see, even most being treated by a Pain Management Doctors are not ‘pain free’, but simply ‘managed’. ‘Managed’ enough that they can be ‘functional’ most of the time. This means that very often, many still have pain throughout the day into the night, but are ‘managing’ and ‘tough it out’ the rest of the time.

        Thank you again for your sensitivity to a subject so close & painful for yourself, but willingness to give another opinion a voice. I appreciate it and know many others do as well.

        1. Thank you so much for that explanation. I know you had no intention of insulting others and i understand the contest in which you were speaking. You have helped me and others further understand this crisis as it relates to chronic pain sufferers. People read the comments as much as they read the posts. Please do share. I want others to be more thoughtful And educated on all victims of this crisis.

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