No Pain Medication Allowed!

Hello.

It has been almost five months in my journey with no pain medication. How’s that working? Well, I’m still here. Many others are not. Their pain too great. Suicide rates are on the rise…

What is a flare like WITH the availability of a rescue pain medication, often called; The Evil Opioid?

A painful flare can be somewhat controlled and frequently curtailed with pain medication. The worst pain, treating it with an opioid, will last for two, possibly three days. At least for me. (Everyone is different). Pain medication allows you to get out of bed and function, appearing almost normal to friends and family. You will still be bedridden at the onset of a flare, but eventually, after a day or two of rescue medications, you will be able to carefully get up. You can join in life activities again with your pain levels decreased due to the opioid you take that was prescribed for you by your medical doctor. As your flare subsides, you taper off your rescue pain medication and prepare for the next excruciating episode. You are somewhat rested, mentally in a decent place, and the intense pain has subsided. You are ready to fight the next flare.

But.

What is a flare like WithOUT the availability of rescue pain medication (the evil opioid)?

This is a relatively common flare experience from what I’ve been told by others and what I, myself, go through;

The pain begins to go from the normal uncomfortable pain to the terrifying, body crushing pain. The intense pain that takes your breath away. There is no out. You know you’ll be in this amount of pain temporarily, but for how long can you take this extreme amount of pain? You are bed-bound but can’t sleep. If you attempt to get out of bed during this flare, you will more than likely lose your balance and take a tumble. You will probably pass out. (Yes, frequently I pass out from the intense flare pain.) You will be nauseous, you won’t be able to take deep breaths, you will cry. You wish you could just die. You take muscle relaxers, Tylenol, and Ibuprofen. Dumbs you down but doesn’t take away the pain. You take other over the counter medications you pray will help. You may try to use alcohol to self-medicate. The fog rolls in… you are experiencing cognitive difficulties now. Fibro Fog. You can’t put a sentence together, you get lost going from one room to the next. You are entirely unable to help yourself in any capacity. You may be on your way to the emergency room. (I don’t go anymore because I was called a ‘drug seeker.’) Finally, after one week or two… possibly more, the crushing pain ceases and regular pain returns. The fog lifts. You are physically exhausted, mentally spent, and dreading the next painful flare because it will come again. It always does…

But! You are opioid-free!

I haven’t been a medication abusing addict, ever. I’ve used opioids for twenty years, as directed, but what the hell do I know? I’m just an adult, chronic pain, patient. I read medication labels and follow those directions. (Yes, there are directions on every bottle, and they are quite simple to follow.) Now, I have had my access taken from me. Some individuals don’t follow the directions on the label. They take more than directed and/or steal them from those that have this medication prescribed for their pain. These abusers have ruined my right to access readily available pain management medication. I’ve been denied the fundamental right to medicine that provides me comfort, reducing the extreme pain I experience because of my diagnosis.

What’s the big deal?

So, I’m not going to die from severe pain just because I do not have access to pain management medications. This is basically a quality of life issue. Not having access drastically reduces my quality of life! These pain management medications are available! It’s like saying there are antibiotics you need to fight the flu, but you aren’t going to receive any because there are those who misuse this medication. There are too many people taking these antibiotics irresponsibly; therefore, you must suffer through the flu for as long as it takes. Realistically you get the flu once a year. What if you got it every month? Does that seem like a sound decision to deny you access to a medication that would curtail the severity? What would your quality of life be like? It would suck. That, my friends, is the big deal!

Does this make sense to anyone? We do not have an opioid problem in this country! We have an addiction problem!!! (Addicts also need the right kind of help with their disease.) The next time you hear about the ‘opioid epidemic,’ please speak up and set the record straight! 

img_0456~Kim

41 comments

  1. This is so unfair, Kim. A drug seeker? You gotta be kidding me.
    I’ve had splitting headaches lately. All I did was walk into a drug mart and pick a pain med. Simple as that. No questions. No frowns. None needed. I’m a grown up. I and I alone decide. Period.
    So sorry you have to deal with this. Like you don’t already have enough shit.

    Liked by 4 people

    1. So MANY are currently dealing with this denied access! It is incredibly humiliating. Yes, I was discussed between nurses and satisfied with their observation, called a drug seeker. That, also, very humiliating. Especially because you are in so much pain by the time you reach the ER you cannot fight back or even have a decent conversation. At some point in time it was put into my record, ‘chronic opioid user’ and that secured my fate at the ER. Many states in the US have gone opioid free… It just doesn’t make sense when these drugs are there, made for pain management, yet I, like so many are denied access because others misuse them. The result. One maybe two good weeks with normal pain a month. I’m missing out on a lot of life… I’m mad but more so, just incredibly sad. xo

      Liked by 4 people

  2. I’m so sorry that you and others in pain have to experience this! When I broke my foot they said tylenol, I said kiss my ass (maybe I’m a drug seeker too?) ASSHOLES! You have found positive things that make a small dent in your pain (distraction), what they don’t understand is that many others are going to find “not good” ways to alleviate their pain

    Liked by 1 person

    1. Correct! The kiss my ass part AND the other ways to alleviate pain! I’ve seen it, tried some of it… many choices are undesirable. Too many are seeking permanent freedom from pain. Not good, so very sad especially because the medications to help are available, safe even when taken as directed! This is bull shit. I’m tired.

      Liked by 1 person

  3. Kim, my God, I can’t believe this?!! I thought you had this figured out when you made the decision to become a Rolling Stone. What happened?? And STATES are becoming “Opioid Free”??? I haven’t heard of this nonsense, but that’s like signing someone’s death warrant to me. I absolutely could NOT survive without my prescribed pain meds. My pain is a 6-7 on average days with all of my other conditions on top of the Fibromyalgia. I would without a doubt, be one of the suicide statistics. What the hell is happening??? I am worried SICK about you my Sister and need to know how I can help. This IS NOT acceptable. It’s treatment being withheld for classified conditions. Patient neglect. Unethical treatment. MUST BE ADDRESSED!!!!!!

    Liked by 1 person

    1. I am ok. I did have this figured out before we got on the road… but then a Minnesota congressman lost his son to an overdose. Three months later new laws were passed. Now in Texas, not allowed to have any unless seen by a Texas doc, even then… probably not.. we travel to Arizona soon… I hope I can refill. Every state is questionable right now but whatever the law is in the state I’m visiting, I have to abide by. We would go to great lengths to get me some pain relief if absolutely no other choice. For now… I just ride out the flares. They are horrible. I have a few tricks up my sleeve…💜

      Liked by 1 person

      1. this is total and complete bullshit! i went to the hospital last year, on my birthday. I was in so much pain I could barely speak. I did not want to go but I didn’t think I could make it through the day………..they told me to take tylenol. really? I can’t walk on my own, turn my head, nothing. I was so upset and wished very bad things on being denied anything! People have NO idea what it is like to live in pain……….I am so very sorry this is happening to you.

        Liked by 1 person

        1. Until this stupid opioid ‘crisis’ is exposed for what it is, pain patients will continue to be denied medication that can improve their quality of life. I just don’t have the energy to fight right now… like many. We so often are only able to fight for survival. That’s where I am right now.

          Liked by 1 person

  4. Kim I couldn’t have said it better. Same thing happened to me. My Texas doctor retired for that reason. He said he didn’t feel he was able to treat his patients like he needed to due to the so called opioid crisis. Take care and gentle hugs my friend.

    Liked by 1 person

    1. My doc still prescribed me meds but for some reason she can’t in Texas. I have no idea what other states I’ll run into legal issues, too. One of my doctors recently quit. My GI doc. He just couldn’t deal with all the restriction. Sad but true. I’ll be just fine, my best to you Rebecca!💜

      Like

  5. Kim, please take good care of yourself and call me ANYTIME. This is no joke and definitely affects our outlook on being able to live a quality of life as well as the hopelessness of being part of a broken system. I am here. Always. This sucks so bad and I’m sorry you are caught in the middle of this bullshit!!
    Stay strong and keep writing about this. CALL ME!!! Love you so much lady.
    ~Tamara

    Liked by 1 person

  6. Hi Kim, I’ve recently seen a new pain team as we moved from the Midlands down South. They want to take me off ALL my medication as they say they can’t be working or I would have no pain and been on them over 20 years. They cannot offer me injections and suggest being told how to pace myself, which I thought I’d done for the last 20 years. Meanwhile they sent me for a Vit B blood test which has shown I’m very deficient and now waiting for bone scan so I understand your frustration. Oh and he put me on Turmeric straight away. Take care x

    Liked by 1 person

    1. Hi Bar! Whoa… are you in favor of this? Being taken off your medications? Do they understand Fibro? Turmeric is for inflammation. There is no inflammation with fibro. Are you arthritic? I’m beyond concerned and absolutely confused as to why??? You will never be pain free because you have Fibro! Good lord Bar, RUN! I’m really stunned!!!

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      1. The trouble is I’ve had four major spinal surgeries and then started with Fibro after one of the surgeries went wrong and I honestly feel that they all treat me differently. One with a spinal hat on ignoring the Fibro and others with the Fibro hat on ignoring the spinal problems so to be honest I’m at a loss. I’m going back after the scan as they said I then have to decide which way I want to go. I am arthritic as well so I just complicate things. Thanks xx

        Liked by 1 person

          1. Since our move I’m definitely in the right area for great Doctors so I’ve just got to go with the flow at the moment. I can’t believe I’ve not had a bone scan or Vit d check before so I do feel they are giving me a bit of an mot first. I am writing on how I’m getting on so you can see it on my blog. Thank you for your kind words. X

            Liked by 1 person

  7. I just… I really don’t know what to say. I’m so fucking angry. We get this chatter and fear mongering bullshit about the ‘opioid epidemic’ here in the UK, too. It’s what preventing me going on to pain medication for a long long time. Eventually I was about to break and I said yes, but ever since the worry has been that they’ll eventually say ‘okay, that’s enough, you’re on your own’. Give with one hand, take with the other. The problem of ‘chronic’ conditions seems to simple – they’re CHRONIC, long term, ongoing – and yet the medical world and politics don’t seem to GET IT. What, do they think it’s all in our heads? Stupid question, they likely do. Do they think chronic conditions magically get better? Denying access to medication that enables you to somewhat, slightly better manage the day to day isn’t just cruel. It’s wrong. So, so wrong. There’s a line between chronic conditions and needing this medication, and those who have needed it for an acute problem (like a broken arm) but have continued using it after the pain has gone. If our pain doesn’t go, our requirement for the medication doesn’t go. I really don’t know what to say, Kim. I feel there should be something you could do to fight this, you and so many others. Absolutely unacceptable.  I saw you mention B12 (they’ve fucked around with that in the UK for those of us with pernicious anaemia; I got into a fight with the nurse, doctor and receptionist – who thinks she’s a doctor after a few months working there – and the whole thing made me livid) ♥ xxxx

    Liked by 2 people

    1. I always say the pendulum will swing. Thing are going to go crazy for a bit. And the reports coming in say there are less reported overdose deaths … from opioids. There are also reports of increases in suicides, obviously for the same reason, lack of available opioids. It is time to begin to fight back… slowly, carefully, clearly. Until this fight is won, we have to survive. We can do this. One day at a time, one person at a time, knowledge is so very important. I hope the post I’ve written is shared far and wide. If not this one the next or the next… I don’t think anyone’s ready to listen yet, but soon they will. I believe that. If we educate. We can do that too. Yes? That’s my plan, my friend.😊💜

      Liked by 1 person

  8. Kim, oh my God, I am so sorry. This is something I fear, terribly. I use Tramadol daily, just to live. 5mg Oxy for flares and I’ve used same dose for 8 years. No increase. Marijuana and Tumeric don’t help me either, nor did Cymbalta.
    It’s all just untrue what they profess. And it’s crazy that when they calculate these so called numbers that they lump is in with illegally purchased heroin. Seriously?
    It’s all a political money grabbing ploy furthered by Dr. Andrew Kolodny who owns/manages a bunch of pain clinics and has stakes in Suboxone. The more he pushes the Opiod crisis, the more pain patients he gets in his clinics. And Suboxone is opioid derived (and people become dependent)!! Oh it’s infuriating!!! He’s created one crisis to supposedly overcome another nonexistent crisis all while he gets rich. ARGH.
    Anyhow. I’m so sorry this has become your reality. I hope you get some relief soon or get to a state where you can get your meds. I’ll be praying for you ❤️

    Liked by 1 person

    1. Thank you Stace! I wish I could say don’t worry, you’ll get the medication you need to live your best life. Obviously, that’s a promise I can’t keep. Until we lose enough chronically ill brothers and sisters… this ‘epidemic’ will continue to severely effect our lives. Our ability to obtain a quality of life we could live with the very real medications that we’ve safely used for years. Pain, severe pain we know so well crushes our ability to fight back. Fear we will be denied the readily available opioid medication that provides us reduced pain silences us. Out of all the symptoms we fight, medication denial should not be one of them. 💜

      Liked by 1 person

      1. Eloquently and correctly spoken, Kim. And sadly, that is exactly what will happen……We will continue to lose people. That, itself, demonstrates precisely the difference between CPPs and addicts. We’d take our lives over resorting to illegal street drugs. How much more proof does there need to be to demonstrate there’s a difference? So so unfair.

        Liked by 1 person

  9. Thank you for sharing. Your story sounds so much like my mom’s. I watched her from going from fully independent to bedridden and depend on me. Pain has become a crime under the current climate. Those that utilize these medications responsibility for legitimate pain conditions are being punished for the actions of abusers. I’ve been involved with the Don’t Punish Pain organization, which has organized rallies across the country on March 20th to bring attention to the plight of pain patients and fight for reasonable reform. In the meantime we continue to raise our voices.

    Liked by 1 person

    1. Wow! Jennie. So very sorry to hear about your moms untreated pain. The pain pills are within reach and work, safely. But. We are denied access, not for our ‘crime’ of being hit with chronic pain but for another’s abusive actions. I’m anxious to learn more about the Don’t Punish Pain organization! I will be Googling that for sure. Jennie, I do believe with holding medication that would be beneficial to a patient is a very basic human rights violation. The lengths we go to to curb our pain, after we are denied medication for pain, can be down right dangerous. What I’d give to not be bedridden! I walk a fine line these days to ensure I do not become a full time shut in! It’s very difficult, especially when in pain 24/7. Thanks so much for you comment Jennie! Best of luck on the 20th! I’ll be looking for information!😊

      Liked by 1 person

      1. I wholeheartedly agree. My heart goes out to you. Here is a link to all the scheduled rallies across the country: https://dontpunishpainrally.com/rallies-chart/
        The founder Claudia Merandi has been working to introduce a bill protecting pain patient rights in Rhode Island.
        https://patch.com/rhode-island/cranston/claudias-bill-puts-chronic-pain-spotlight
        Progress is slow, but this group is doing great work. The Facebook group is a great way to stay up-to-date with what they’re working on. If you don’t have Facebook just check the website for updates.

        Liked by 1 person

        1. Thank you!!! I will be sharing this information. I’m thrilled to follow! Thank you for advocating! I just followed your blog as well. We need superhero’s right now. I’m bedridden today, my hubby cares for me. All of you who advocate for pain patients rights are my hope for a return to manageable pain days. Sincerely, thank you Jennie!💫

          Liked by 2 people

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