My ‘good day’ at the fair!
I live with chronic pain. Intractable debilitating chronic pain. I have a disease that has no cure and no medication tailored to treat it. That means symptom management. Med’s for the sleep issues it causes, meds for the stomach issues it causes, meds for the muscle spasms, meds for my bladder, braces to support my joints, ice packs, heat pads, yes, essential oils, supplements, mobility devices and pain medication. Heck, I even bought a hot tub.
This disease has progression which means, over time, I will get worse.
I’m fortunate, with the current climate going on, that I have pain meds. But all the propaganda, and yes, it’s propaganda when lies are told, is destroying my RIGHT to treatment. Agencies are creating guidelines for which to treat and how to treat and yet where are the representatives on these panels for patients with chronic pain? We’re an entire class of patients who depend on the medications to function but we’re not truly represented. How can you have a panel of people create guidelines for everyone without having a representative for those who suffer? Not only should we have representation but also a handful of patients with experience and history on these medications to speak out on our behalf. We matter too.
Putting dosage limits harm patients. Why? Its not ‘one size fits all’ and that approach assumes that it is. Would there ever be dosage limits on SSRI’s, cholesterol medications, insulin, diuretics, ect? NO. They are all tailored to a patients unique needs. In my case, I have a high drug tolerance to certain medications as well as a fast metabolism for those same meds. That means I started out on a higher dose at much more frequent intervals. I’m being punished for how my body processes these medications. Of course, I’ve tried other options and have other methods that I utilize to help with my pain. But often, this is not enough.
I’ve been on the same stable dosage for years without escalating them. In the guidelines, it mentions CPP (Chronic Pain Patients) will be identified by those who have a stable dosage without escalation whereas addicts will doctor hop and have frequent escalation of meds. This is a problem. Often, we are misunderstood by doctors, discover we’re not the right fit, denied treatment, differences of opinions and other reasons for seeking out different doctors UNTIL we find the right fit. I went through two prior pain management doctors before finding the one for me. Am I a doctor hopper? Guidelines would suggest so. With so many doctors paying the price for the crack down on opioids, due largely to illegal street drug usage, many doctors are denying treatment and refuse to help patients in pain. This means, a whole other referral, another long wait for a new doctor and no care until we find someone who will treat us. This ‘looks’ like doctor shopping but I assure you it’s not. The guidelines need to change to reflect this.
Escalation of dosages and addict’s vs CPPs; It’s not uncommon for CPPs to need surgery for issues that arise, which means, more pain medication. It’s also not uncommon for some of us to need a dose titration upwards to relieve our pain. Guess what? Some of us progress. Some of do build a tolerance to the medication just like any other medication. So, in these cases, escalation would be appropriate just like SSRI’s are increased when symptom management is no longer managed. Yet, the guidelines only show dose escalation as an addict’s response. This is entirely false and harmful to CPPs.
I have bone inflammation in addition to many other painful conditions I suffer with. Imagine feeling your bones trying to expand when they’re not meant to do so. This is extremely painful. Walking and standing make this unbearable and contribute to the increase in pain. My condition has progressed. I have MRI’s to prove this. My pelvis feels absolutely shattered. Imagine trying to walk, sit and even lay down with pain this intense. And yet, I have to grit and bear it because my pain medication dosage is at the top of the ‘recommended’ limit. Instead, I was given testosterone cream…. Still waiting for relief.
It’s extremely terrifying knowing my condition will continue to progress and I will continue to deteriorate with very little possibility of added pain relief. I have NOT become tolerant of my medication. I only know this due to being on bed rest for over four months and having my symptoms abate enough to be mostly managed by my current dosage. But with activity, comes pain. That means trying to maintain my household along with a special needs kid, who also is showing my health symptoms, is not manageable. The longer I’m upright, the more my pain increases until I’m back on back and waiting for the flare up to calm back down. Vicious cycle my life has become. I can not function normally at the level of pain medication that I am at currently. I’ve also already learned that, even with pain relief, I MUST take it easy so as not to flare it up so badly that my body progresses much faster than I can handle. So what are my options?
I’ve already determined that at the right dosage, my medication WORKS. Not only does it help my pain but a bonus, my fatigue as well. Who knew? It also helps my IBS-D and other issues I suffer with. Too bad it doesn’t help with my sleep. They don’t make me sleepy or ‘high’ as many seem to think.
So how do we address patients like me? Where are the ‘guidelines’ for CPPs who DO need dose escalation? Who DO need higher than a set dosage limit when their body is different and can handle so much more? Again, we’re not ‘one size fits all.’ This is a medication just like any other. Addicts will abuse whatever they can get their hands on but why should patients pay the price for someone else’s transgressions? Any drug can be abused. We simply cannot control any and every product known to man that can be abused by some person or another. We cannot force people in pain to simply deal with their pain when other options have failed to address it.
Can you imagine having your child say to you, “I miss my old mommy, I want my mommy back.” “I want you to spend more time with me.” “You never do anything with me.” “It’s always no.” “You never feel good.” My son is older and deals with health issues himself so he understands. My daughter had a small part of my life before my flare up became disabling on an every day basis. She had pieces of me and moments with me that we actually together, spending quality time and simply being ‘mother and daughter’ as it should be. She was in kindergarten by the time I was crippled with everyday pain, unable to function like a normal human being. She didn’t get the school field trips with her mother, the volunteering in her classroom, the family events, like my son did.
My son was lucky. I may have battled issues chronically and out a few times a week, but I had normal days too. There was so much less canceling of events due to the unpredictability of my health. Now, I simply cannot plan at all. And for every good day I have that equals between three to six bad days to make up for it. So if I have two good days in a row, I’m laid up for a long while. That’s just for my ME/CFS. That doesn’t include my flare ups of bone inflammation that to this day, is untreated and undiagnosed beyond the radiology report of progressed unusual pattern of patchy inflammation. That pain will knock me down and wipe for out for weeks on end. I’m slowing learning my patterns and triggers. Day by day, moment by moment. Existing, but not living.
In a perfect world, I would have access to pain meds at whatever level is needed to function as close to normal as possible. Higher dosages during the flare ups and normal dosages during manageable times. I would have control over what I NEEDED and not have to worry about suffering through intense pain for weeks on end. It’s all about personal accountability. Personal responsibility. Instead, I have someone else who controls my life, who doesn’t live with the pain that I live with. Someone who will never truly understand my lack of functioning or I would never have to suffer in the way in which I do.
People are allowed to buy NSAIDs and Tylenol and dose as needed. Why can’t I have control over my own meds to do the same? Did you know I can get high off Tylenol? Weird, right? So many substances out there that a person can get high on. If they want to get high, they’ll find a way. So why should I suffer for other people’s irresponsibility? Isn’t it innocent until proven guilty? Unless I’ve personally given cause why should I be drug tested and treated like a criminal and beg for relief, only to be denied. Why should other people have that much control over my own life when they do not live in my shoes? And I am not trying to knock drug addicts, knowing that they’re battling their own issues.
Never would I have ever agreed with the idea to just legalize all drugs. But having lived with the amount of pain that I do, on a daily basis, and seeing the control that agencies want to have over me, it makes sense to me now. I support that idea. It’s worked for other countries. Just provide more rehab facilities, mental health facilities and get rid of the stigma that surrounds mental health patients and drug addicts.
Those are things we need to be doing, not concerning ourselves with controlling a drug and denying true access to those who need it. No, I am not an addict. No, I do not abuse my meds. But I do understand why patients are turning to illegal ones. I get it now. I haven’t done that but I do understand it wholeheartedly. It certainly changes your perspective on things, when you live with chronic pain and others completely controlling your life as if you’re a criminal and guilty of some crime, denying relief when needed and taking away my right to live and function in a way in which I need.
We need change. The current system is not working and we’re repeating the same mistakes over and over again. Maybe they didn’t realize how big of a push back they would get when they decided to demonize a drug that provides relief to so many. Why the lies in the first place? Why not raise awareness about the true statistics such as illicit fentanyl and other illicit drugs that are taking lives due to the lack of regulations and buying off the black market. Why add prescription medications into the numbers as a blanket statement instead of actually breaking down the numbers showing illicit drug use deaths and overdoses vs legitimate prescription opioid patients’ death and overdoses? Wouldn’t this highlight the true dangers of street drugs rather than scare half the country about a prescription drug so many are too afraid to use if it needed and doctors are too afraid to prescribe?
We’ve become demonized for using a medication that truly works and truly helps those in need. Talk to anyone who doesn’t use opioids (legally) and they’ll have a horror story about some relative that died or overdosed on illicit drugs failing to understand the difference between a regulated safe prescription when taken as directed vs buying an illegal drug off the street. All because of the hysteria created by the media and politicians siting incomplete facts and half truths. Maybe they’re ashamed of the truth. Stop the stigma.
And what about the suicides? Why is the media staying silent on this issue? Chronic severe pain can cause major mental health issues and when you’re suffering without relief that drives up the rate of depression and anxiety and worst of all, suicide. People being force tapered and denied treatment are turning to other options. It’s actually driving up the rate of illegal drug use. It’s also driving up that rate of suicide, a problem already too big for our nation. Where is the outrage? Where is the advocacy?
In addition, many of our veterans are taking the brunt of this treatment. They were some of the first to be force tapered and dropped as chronic pain patients. I know, because I’m a veteran and it’s been the talk in our groups for a while now. We suffer with a high rate of chronic pain due to the exposures our men and women face in service. We voluntarily put our lives on the line to protect and defend our country and this is how we’re treated in return?
Imagine if Insulin were in the spot light. Insulin can kill a patient, especially if they don’t have need for it or taken at the wrong dosage. Just recently, a doctor working at a VA hospital was using Insulin to kill patients. Should we ban Insulin? Should we force patients to go to a facility several times a day to have their medication monitored and administered? Imagine the outrage if Insulin were in the spot light and patients were forced to jump through hoops to get the drug they needed to function. Imagine if they were demonized for using this drug that can, in fact, kill. Imagine if they were treated like they were dirty for simply using that drug to function. That’s how, many of us CPPs are being left to feel; dirty.
Why are we not suing the makers of SSRI’s for the dangers associated with those drugs? No one told me the hell I would go through when tapering off of them. They too are given for chronic pain, off label. Certainly didn’t help me. We don’t talk about how dependent a person becomes on those drugs. No different from opioids taken as prescribed. We all become dependent on any drug taken long term. Period. So where are the lawsuits for targeting doctors and people with all the commercials catered to their products? For all the samples and sales pitches to the medical system. The payouts and perks when an office markets those drugs to patients, where is the outcry for this?
How many suicides due to SSRI’s, serotonin syndrome, deaths, personality changes, ect? How many children harmed? The list is endless but it’s not SSRI’s in the spot light. It’s opioids. Why? That’s a good question. This should never have had any effect on patients taking prescription drugs as prescribed. This should never have had any impact on people who need legal opioids for pain. Yes, there were pill mills. They’re being addressed. Yes, some may have been prescribing opioids too easily without exhausting other options. But this too, has been addressed years ago.
As a patient suffering with debilitating chronic pain that will worsen over time, I’m left without options. I’m harmed by the regulations in place that don’t address the real problem and assume patients are ‘one size fits all.’ I am a fast metabolizer and have a high tolerance for pain meds. I’ve exhausted other options and though I metabolize these medications quickly, they work and work well at the right dosage. Patients need the right to escalate their dosage as needed. Patients need the right to ‘doctor shop’ to find the right fit after dealing with a system of doctors who are refusing patient care. And I’m not trying to blame all doctors. Many are just as fed up as we are. We need to address those issues. We need to quit assuming patients are guilty and treating them like criminals for simply needing a drug that helps them function. This is wrong on so many levels.
We need to allow patients the right to access medications with personal responsibility. Just like a patient having access to NSAIDS, which are also dangerous, we need the right to have the amount needed as needed to address our pain. Ultimately, it’s our body and our responsibility. I have no problems signing a contract taking that responsibility onto myself. I should have the right to be in control of what I need when I need it. I’m not an addict so don’t treat me like one.
I jump through hoops to get my medication. I’m treated like a junky at pharmacies, ER’s and by people who believe in the stigma that our media and government has helped produce. This is a public nuisance to us CPPs. So where is our law suit?