what it's really like being on opioids for chronic pain

What it’s really like being on opioids for chronic pain

Amid the thoughtless new CDC guidelines designed to punish chronic pain patients on the basis that they are addicts I realized there needs to be more stories out there about what it is actually like to have an opioid prescription for chronic pain.

You can read my story here for some background context of my illness, but basically I went a long time searching for a diagnosis all while my health was getting worse and worse. Ironically I can base my difficulty in getting diagnosis and eventual decent into long term chronic pain on the CDC Lyme Disease guidelines. Doctors ignored me or brushed me off and told me I was depressed and as a result by the time I was diagnosed I was almost bedridden and my life had come to a complete standstill. I spent the next year after my diagnosis undergoing treatment for Lyme Disease with no pain medication of any kind. I was in agony and could barely function, but I was determined that I would not take pain medication. I had two young kids and I thought pain medication would make it too difficult to take care of them.

Things eventually came to a head because I was not sleeping and not functioning in any mental or physical capacity. I went to my doctor who at this point I had been seeing more than a year. I confessed  that I couldn’t do it anymore and I just needed to be able to sleep. I had already tried sleeping pills and they didn’t work because my pain levels were too high. I had tried yoga, meditation, massage, vitamins, alternative medicine, you name it I tried it. My doctor looked at my chart and told me that I had been her patient for some time and I hadn’t asked for anything before so she felt completely comfortable prescribing me one Hydrocodone per day.  At that time Hydrocodone was considered a schedule III drug, meaning I wasn’t treated like a criminal for taking it and I only had to go see my doctor every three months.  As soon as I started taking it I saw a huge reduction in my pain level and was able to start getting more sleep. I gradually improved as I stayed on the medicine. I was able to play more with my children, I started going out more with friends, I spent quality time with my spouse, started exercising, I cleaned my house more, and I started writing on my blog frequently. Hydrocodone didn’t take the pain away, but it lessened it enough for me to live somewhat of a life.

I started taking Hydrocodone in 2014. A few months later the DEA published its new rules placing a more restrictive classification on Hydrocodone products. They moved it to a schedule II drug along side other pain medications like OxyContin, Morphine, and Percocet. This was when I started being treated like a criminal. I was taking the same medicine in the same dosage that I had been from the beginning, but all of a sudden I had to go to the doctor every single month (my doctor is an hour away and when you have chronic pain it’s not painful at all to make that drive), I had to have a written prescription (nothing called into the pharmacy), I got harassed by the pharmacist every time I filled the prescription, and I started getting drug tested. The drug test costs 1800 dollars, only half of which my insurance covers because it is considered out of network. So now I have to pay for a drug test that was forced upon me because I might be an “addict” for taking one Hydrocodone a day.

Every day it gets harder and harder to be a chronic pain patient. The harassment from policy makers like the CDC is getting worse and worse and the support for people in pain has only gone down, not up. I now have a few choices. I could stop taking pain medication,  of which by the way I am taking in the same dosage that I started with two years ago (so maybe I’m not an addict?) However, this would most likely mean I would go back to being bedridden. I am currently working part time, I’m active in my children’s lives, I volunteer in my community, I can go out with my friends, I exercise, and I blog on a regular basis. If I stopped taking pain medication all of this would most likely be gone. So my other choice is to submit to harassment and pay ridiculous amount of money just so I can be allowed to function. I have to live in fear knowing that the CDC or the DEA or my doctor could take away my ability to function at any time they feel like it and there’s nothing I could do about it.

These “guidelines” affect people in pain more than they affect addicts. They affect sick people who don’t have any idea how to sell their drugs on the black market. They affect sick people who are in pain in the first place because of multiple doctors’ negligence and are now being punished for that negligence by being told that it’s all their fault. They affect sick people are now being told they just need to take Ibuprofen and do physical therapy and get over it. News flash CDC, do you really think we haven’t tried Ibuprofen? Also, I would love to do physical therapy but my insurance coverage is limited so unless you’re willing to pay for it, don’t suggest it.  So go ahead CDC, pat yourself on the back and tell yourself you’re doing something good here even though all you’re doing is punishing people in pain and ignoring the unrelated problem with the disease of addiction.  

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27 thoughts on “What it’s really like being on opioids for chronic pain

  1. Goodness I had no clue it was this bad for a one pill a day need. Clearly CDC & DEA people drafting this BS have not had chronic pain. It’s going to push more people to illegal drugs.

    1. That’s the ironic part. If people can’t get their pain treated by prescription medicine then they might be forced to turn to drugs. If medical marijuana was legal in my stat I would certainly give that a try, but since it’s not pain killers are my option of last resort.

  2. I sincerely wonder how many of the drug overdose deaths they cite are from people with chronic pain who are only seeking relief of their pain through intentional or unintentional overdosing.
    I know that some days the pain can be bad enough to make that decision a reality. I am sure these people are counted in the over dose deaths as I read that they include suicides. Yes I also believe that making life more and more difficult for chronic pain suffers to get medication is only going to drive up the illegal drug deaths more as the sufferers will have no option but seek illegal avenues to alleviate their pain. Telling a person who has been on opioid pain medication that they need to take an aspirin and call them in the morning is a bullshit response and more irresponsible than the over prescribers. Why are chronic pain sufferers put into a separate group and treated like some sort of pariah. We are not all drug seekers, addicts (in a way we are addicts, addicted to trying to be pain free) or resellers. We are a group of people who try to live our lives the best we can given the shitty card we have been dealt. We didn’t ask for this and don’t deserve to be treated with disrepect or derision.

    1. I have wondered the same. It’s ironic that taking away people’s way to minimize pain may actually increase suicides, but no one seems to think this through.

  3. My doctors in both Washington and California write me 3 scrips at a time carefully dating them 30 days apart. There are lines for both date written and date to be filled. It’s legal in both states though I don’t know about Texas. Talk to your doctor about it. At least you’d only have to him/her every 3 months. I take Oxymorphone ER at a low dose 3/day & have for the 7 years since I’ve been diagnosed. It’s starting not to be enough but I’m afraid to ask for more. Sigh. Good luck to you. Feel free to email me if you have questions or something.

    Mary Kay

    1. Do your doctors know that you get a prescription from another doctor. I just asked because if my doctor knew I was getting a prescription from another doctor she would fire me from her practice in the blink of an eyelash. Because that’s considered drug-seeking Behavior.

      1. I’m sorry – I was really unclear about that. I was living in Seattle when I first started taking opioids & have sinc moved to CA. So the the scrips were serial rather than concurrent.

  4. It really is awful just how tightly their regulating it these days. It makes it more difficult for legitimate patients who live with chronic pain to get the pain relief that they need in order to function. It seems like the significantly reduced quality of life and negative effects from untreated chronic pain would be enough to convince people that pain relief is necessary in this country. Especially when you look at the alarming number of people who are living with chronic pain every day.

    I agree with you re: medical marijuana. If I lived in a state that allowed it, I would probably be using it. My arthritis, scoliosis, fibromyalgia, and sciatica are such that my current medications control them pretty well, but I’m afraid that one day I may have to move or ask for something stronger in order to control the pain.

  5. Thank you for this article. I am hearing these same sentiments from EVERYONE that suffers with chronic pain since the new cdc guidelines. I was diagnosed with Fibro 16 years ago at age 20 but started having symptoms at age 14. I have several other chronic illnesses that leave me with no other medication options besides opioids (after taking NSAIDS for almost two decades my body said no more!). I hate having to rely on these medications just to function and take care of my kids. But I hate even more the stigma attached to it and the assumption that I must be an addict!

    I worked for years with substance abuse as a social worker but society doesn’t understand the difference between dependence and addiction. But they have no problem with alcohol! I finally found a medication regiment that was working fairly well for me, including the butrans patch, until one day five months ago when my GP told me – oops we can’t prescribe your pain meds anymore because of the DEA so good luck! And here’s a referral to an addiction clinic. I had a panic attack in the parking lot and called my husband sobbing. I went to my old rheumatologist who totally understood and trusted me but also couldn’t take me on because he can’t see me every month to hand write a script! So he referred me to a pain specialist and now it *looks* like I will get the meds I need…but I have to go in every four weeks like clockwork, submit to drug testing, and live in CONSTANT fear that one day they will just say no.

    The ironic thing is that they tell you the most important thing is to cut out stress from your life to ease pain – and I am more stressed than I’ve ever been! I feel victimized and marginalized by the government and society – something I’ve been lucky enough to not have experienced before. I don’t tell ANYONE that I take opioids for fear that they won’t trust me with their kids (I volunteer a lot). I wish we had a powerful chronic pain patient lobby that could educate these cruel and ignorant politicians. It also makes me “ragey” as you put it. But what can we do?

    1. I couldn’t agree more with everything you are saying here. I am terminally ill and have been for years. I also have been on chronic pain medications. I also the medical records to hack up my issue’s but it is difficult to find a Dr that’s not scarred of being fined or lossing their licence. They also say lower your stress levels buts that’s very difficult to do when you go month to month wondering what will happen this time when I see the Dr. Thank you for your input on this subject it’s nice to know I’m not alone in this matter.

  6. Thank you so much for your article. I completely understand the humiliation of being made to feel like a criminal or being made to feel weak for needing pain medication. I have suffered with chronic pelvic floor muscle pain for over 4 years. I have tried everything, Botox injections (not covered by my insurance, by the way,) nerve blocks, physical therapy, yoga, meditation, and a multitude of other treatments. I can only function with Percocet. I have taken 7.5 mg of Percocet a day for the past 3 years. I take 2.5 mg three times a day. I have only taken more for a couple of days after procedures that made my pain worse. Otherwise, I have been on the same dose the whole time. Every time I take that 2.5 mg, all those feelings of guilt and shame swarm through my head. I dread having to go to my doctor every month to get my prescription refilled. I feel like I’m a weak person, I feel like I’m doing something illegal. It’s just an awful feeling. Because I have to get a physical written prescription, not one that can be called into my pharmacy, I have to make sure to plan any trips (the very few I take, like helping my kids move into college) around the time I need to pick up my prescription. I understand that there’s an opioid addiction epidemic in the country, but some of us can’t live a productive life, with a semblance of normalcy and a bit of joy and happiness without opioids. We, chronic pain sufferers are being thrown under the bus. We are not weak, we are not criminals, we are just in pain every hour of every day.

  7. This is how dark and corrupt the Congress really is. They do not know any better and most of the people who do work for Congress have not used the brain for thinking in years and this is all they could come up with. I am fed up with it all!!! I have been on pain meds for my fibro, Hashimoto’s, fibro, degenerative disc disease, arthritis of the spine, stenosis, spondylosis etc and the list goes on…. for 20 yrs. tried surgery, injections, physical therapy, over the counter medications….now with a failed back surgery, I now have a spinal stimulator implant, with the pain so bad in my hips now, I can hardly even get up! and that is with Oxycontin and Hydrocodone….I am undertreated, dare I say anything about that though….I’m in NC, I wonder if medical marijuana is legal here…

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