Right To Pain Relief- We’re Not ‘One Size Fits All’

My ‘good day’ at the fair!

FairPhotoMe1

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?

 

My Letter About Opioids

I was once physically active. I was in the military ready to fight for our country and give my life if need be. But I got sick. I’ve been sick since service and getting steadily worse over the last 19 years. The last 5 years have been brutal on me. My life was taken too young. I’m too young to have a handicap plate, says one doctor. I’m too young to have a wheelchair, I’m too young!! Well, disease doesn’t discriminate. Here I am watching my children lose their mother. All the activities I did for my son, I can not do for my daughter. “I want my momma back” says my daughter. She misses our play time, my attention, my cuddles. Don’t touch me, it hurts. I can’t go, I have a migraine. I’m sorry I didn’t cook dinner…again… I have lassitude and standing hurts. I’m sorry we can’t go, I can’t walk and it’s not wheelchair accessible. I’m sorry I can’t play that game with you, I have sensory issues right now and am in a flare up. I’m sorry I can’t take my son to all his special needs appointments, my driving is being hindered and my body is in too much pain to leave the house. I lay here, my upper body not wanting to support me being upright. My frame is a skeleton as my muscles atrophy and my weight is gone. I get partial paralysis when the temperatures drop so I can’t move real well. I live for every few hours when I can take that little pill to allow me to move for two more hours. I have come to rely upon that pill to get on my feet. I still can’t walk far or stand long, but I can do a little bit with that little pill. Imagine what I can do if I had a dose strong enough to knock back most of my pain. Imagine having a bit of my life back again so I can be there for my children and keep them out of trouble, giving them the attention they need as a parent. I don’t know what my future holds or how long I will live to see my kids grow up, but I would like to. I would like to without the pain that cripples me because I’m undermedicated. I have a high metabolism and a high starting tolerance. It’s just how my body was made. I’ve exhausted other resources and opioids work and work well for me. I don’t get high. I don’t get euphoric or even sleepy. I don’t understand how others can abuse them as they do nothing to my mind, only relieve the pain either a little or a lot depending on how much I’m given. I’m tired of being treated like a criminal or druggy for needing a med to survive just like a diabetic who is dependent upon insulin. I need my benzo to sleep as I’ve tried all the others and a safe alternative made me stop breathing. My body is different than others. My benzo stops the muscles that tighten and spasm and cause dystonia like symptoms. It’s the only thing that works as muscle relaxers have no effect on me. I don’t know why. It’s just how I’m made. I’ve taken them safely for years. I don’t take them at the same time and I’m smart with my meds. It’s my body and my right, right? When did others acquire the right to make medical decisions about MY body?
Here it is in a nut shell, I would be more than happy to sign whatever form giving consent to increase my meds to a dosage high enough to combat the pain and give me a quality of living risking death any day. I would rather have some semblance of a life and risk dying from my meds than to live here in agony and risk dying from being unable to tolerate the pain anymore. Where does that leave my kids? My family? I’m the glue that holds them together. I’m in palliate care though see a typical pain management center and yet I still don’t get enough meds to function. I’m not going to ever get better and I’m now watching my own child deal with my pain as it passed down to him as well. He’s a teenager. He’s tried tylenol and NSAIDS (He’s lucky he doesn’t have my mutation that doesn’t process NSAIDS), but they don’t work for his pain. I’m so scared for him. Will he ever get the opportunity to use what has worked so well for me at the right dose? He already doesn’t want to live. He lives for me right now. I can’t imagine what will happen to him when I’m gone. He has no hope for his future and I’m losing hope for mine.
Do you want a productive society? Truly? Like any meds there are risks. Like any med there are benefits. I should have the right to chose what I put into my body and stick with what works and use the appropriate amount for MY body to be productive, to give back, to help society rather than lay here crippled and watch my family fall apart because someone without chronic pain decided they wanted to make my medical decisions for me. I’ll take death and pain relief over this hell my life has become. I’m a veteran and I’m suffering and now my child is is suffering as well. Cannabis might be an option for some, but it is not an option for me. It should be legal for those it does help, but I chose my current med as I don’t get high and it really truly works when at the right dosage. I chose life. For now.

Yes!! I take Pain Meds!!!

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I recently read a very heartfelt blog in regards to pain management.  Her words could have echoed mine.  It seems that those who take pain medications have become villanised during the recent opioid ‘crisis’ sweeping through this nation.  As doctor’s slash prescriptions across the states and other’s stop supplying all together, where does this leave those who sit here in chronic pain land?

Did you know that studies show less than 6% will abuse their opioid prescription?  LESS than SIX percent!!!  Let that sink in.  I thought we were having a crisis here?  Ok, many people apparently die a day on opioids…  Please enlighten me as to how many of those death incurred were from following their doctors orders and not abusing their medications?  How many?  Why in the blue monkey hell does 94% of the population who take their medication as prescribed have to suffer for those who CHOSE to abuse their drugs?  If you blame addiction being the problem, then you don’t have a crime, you have a mental health crisis for those that do so.

Studies have also shown that those with TRUE chronic pain do NOT abuse their medication and many do not get high or sleepy when on them.  I’m one of those people.  I don’t get high on my pain meds, I get activated instead.  My doc informed that a small percentage of people get energetic on pain meds rather than sleepy which is why it is difficult to take them before bedtime and which is why I do NOT take pain meds at night.  I suffer till sleep takes over.

I’m also a rare patient indeed.  I have found my body to contain a rare double metabolic mutation on my CYP2C9 pathway that is responsible for metabolizing anti-inflammatories and blood thinning medications.  What does that mean?  I can’t take those drugs.  Less than 3% per one study and less than 1% in another study have that mutation.  It’s not well known.  I also happen to be allergic to Morphine, discovered that toroidal has no effect on me and I’ve exhausted pretty much all of the migraine medications available.  I also metabolize other medications differently and tend to have opposite reactions to drugs and extreme sensitivities to many others.  Meaning give me even the smallest dose of some drugs and they will send my system into overdrive with various horrible side effects that don’t tend to go away with time.  Other drugs you can pump me full of and they have no effect, like valium, a long acting benzodiazepine but  give me Xanax, a short acting one and it will make me really sleepy.  I was told that is not how it’s suppose to work, but hey, that’s how it works on ME.  Can you imagine going to the ER in pain?  Hey doc, I need this pain drug, that’s the one that works.  “I’m sorry, you need to leave, your drug seeking.”  I’ve had this experience.  You think maybe I just know what works for my body since it’s my body and I’ve lived in it for 39 years?

Never have I gone to the ER or the doctor asking medications for any reason other than as needed and intended.   I’ve taken opioid medications on and off over the last 17 years and not once have I abused them.  It wasn’t till my last flare when I was knocked off my axis and having to live in unending debilitating pain and muscle fatigue that I started using opioids full time.  But opioids don’t work for chronic pain says very few people in true chronic pain….  But the doctors seem to believe that.  What about the patients.  You can see article after article saying that these meds do not work for that and yet all the comments from real people say they do.  Opioids do NOT work for fibro.  Well, I have that too and it damn well reduces the pain enough for me to function so it works for ME!

TMI, but just to give you an idea of the reality of my life:  I suffer from: ME/CFS (Myalgic encephalomyelitis or Chronic fatigue SYNDROME), Fibromyalgia, Migraines, Chronic headaches, IBS-D, IBD (in remission), Interstitial Cystitis (A fun one), Tendonitis in many locations, esophageal spasms,  dysphasia, (constantly inhaling my own saliva and choking), GERD, Gastritis, significant ovulation pain that can drop me on my knees, painful periods, restless body….   Is that enough for you?  MOST of those cause me pain.  What I found is that opioid medications have helped ME with those conditions, almost all of them.  One drug for many problems. I’m also on a medication for nerve pain.  I have joint pain in almost all of my joints either all together or flaring up in various places throughout my body at different times.  And I haven’t even mentioned my hip pain. The most excruciating place on my body.  Imagine feeling like your groin bones are being twisted on and off all day long.  Imagine trying to walk when each step flares that pain up.  Imagine being in tears in bed at night because you can’t get comfortable due to the pain! No position helps unless I’m sitting criss cross apple sauce in my chair. And due to a failing medical community (in my opinion), I have yet to even be allowed an MRI to investigate it even though I’ve asked many times. Imagine having to buy your own cane as the pain is so bad.  I have bone pain.  I have nerve pain.  I have PAIN.  InvisibleIllnessElianaMeir Picture Created by : Eliana Meir

I also have fatigue.  Due to ME/CFS and fibro, I have fatigue.  Imagine going to a pain management doctor seeking pain meds for ME/CFS.  Most only know the name of Chronic fatigue syndrome and most of them that do, have very little knowledge of the condition as it is not typically taught in med school, very little money has been given for research for a condition that has effected a portion of people around the world.  As one pain doctor told me, “I would NEVER have put you on pain meds for chronic fatigue!”  I knew right then she was ignorant to my condition.  I’m not tired.  That is not the fatigue I suffer from.  The majority of those who hear those words, CFS, ASSUME I am overly tired and most likely lazy.  Let me give you a little idea of what I mean.  My muscles will feel like I have the flu without having the flu. Can you imaging having aching flu pain in your muscles all the time?  My muscles will fatigue so easily that if I push it, I will be paralyzed until my muscles have had enough time to recoup the energy it’s lacking.  It hurts.  Imagine holding your arms or legs out for hours at a time.  You know the quivering shaking painful feeling that builds up in the muscles the longer you hold them out there?  THAT is fatigue! So people can assume I sit here being lazy and ‘tired’ with my unknown condition and make judgements on me based on their own misinformed mind.  Muscle fatigue HURTS.  It will flare up just walking to my mail box.  Try going grocery shopping!  One time I was determined to trim a few branches (thin ones) that were growing and hitting our roof.  I sat on the roof with some tree trimmers, clipping the little branches until my fatigue was building up.  I was curious what would happen if I kept going.  Well, I learned.  I won’t do it again.  My arms became paralyzed.  I couldn’t use them. I couldn’t hold anything in my hands, I could lift them up, they flopped like a fish and I sat there on my chair (with help getting inside) for over an hour as the feeling gradually faded and I could use my arms again.  This, again, is muscle fatigue.  Now imagine that in your legs when you’re trying to go grocery shopping or any length of walking.  Now you know what I suffer.  I have a wheel chair for events that require a lot of walking as I wouldn’t be able to attend otherwise.  I am mostly housebound and when I’m not, I pay for those times I leave my home.  It can be paid for days while my muscles work to repair themselves.  Opioids have helped me with this.  They take away from the painful heavy feeling that comes on from use of my limbs.  I still have to pay for it, but it allows me to leave my home and attend my chores, cook dinner, vacuum, and just LIVE. I want to give a shout out to Jennifer Brea for being brave and bringing awareness to our condition by creating the documentary called Unrest! In limited theaters now and free on PBS in January.  I’m so proud of her!

So please tell ME how opioids don’t work for these kinds of things?  Do you live my life? You know what it’s like or how much better my life is managed when I have a medicine that actually does work for me?

The regulations that have come down in regards to opioids are not helping patients. In fact, it’s harming them. If they think the objective is to stop abuse, they need to know that they will only create more abuse by taking true pain sufferers off of the medications that reduce their pain.

If a person is going to abuse a drug, they will still abuse a drug even if it’s taken from them. They will just find something to replace it. Stopping true pain sufferers from having a medication that works for them will only create more pain and more addiction as they seek out alternative sources to stop the pain. This is my body. I have to live with it. Why can I not chose what to put in it? Why can I not have a say in my own healthcare? Why are people being left to suffer and told to see a shrink, that will help with the pain.

Not only do we deal with doctors judging us, but pharmacies as well. It’s not the first time I’ve been looked at like I’m doing something wrong. They too hold strong opinions without knowing your history. It’s a sad world when one finds something that works, and yet it has such a strong stigma attached to it. If I did NOT have my opioids, I would be living illegally or would be bed bound. I have two children to take care of. How am I suppose to do that from my bed, riddled in pain and suffering? I’m hearing the VA is stopping the use of opioids. Many got cut off cold turkey after long term use. One of those people from our group committed suicide. The pain is real. The support is lacking.

What studies are finding is that even though opioid use is down (I wonder why, hah) the crisis is getting worse.  People are left crippled in pain, others are turning to illegal drugs, thus making the situation worse, and even more alarming is the rise in suicides taking place due to the pain being too much for people to bare.  They are creating an even bigger crisis!  Doctor’s that DO want to help patients are being made to jump through hoops in order to do so.  They are on a watch list and as a patient, you can only pray that the hammer doesn’t come down on your doctor’s head leaving you existing like those who have already been cut off and drowning in pain.  Patients are being passed around from doctor to doctor as each tries to get the other to prescribe the pain relief needed but won’t do so themselves due to fear of this barbaric system.

Another major point is that opioids can cause physical dependence.  This is one of the reasons sited for stopping the use of opioids.  It will be a challenge getting off of those drugs in the future.  Some will build a tolerance to the drug and will need to continually increase it to achieve pain relief.  I agree that this is an issue.  But please tell me what alternative method of pain relief will NOT cause the very same issues they blame with opioids?  Do we not become dependent on Gabapentin, Lyrica, Cymbalta, and other anti-depressants they’re passing out like candy in hopes of relieving some pain?  Have you actually read the studies on those drugs?  Essentially, per one study on Gabapentin, 30% of patients achieve pain relief on this drug.  Typically going from a 7 to 8 level pain down to a 4 to 6 level pain with use.  Not many actually look at those numbers.  You may very well be in the 70% that has little to no relief.  Also true is that many have to continually increase the dosage to maintain pain relief.  And getting off of this drug!? Wow, the side effects of reducing the meds or even being on them are intense.  How is this different from opioids?  I was on Cymbalta and it did nothing for pain, in fact it was the WORST drug I have ever had to get off of.  I was enraged, full of anger, dizzy, felt drunk, nauseated, and suicidal even reducing this medication at the slowest possible rate I could.  It was ugly and I will never touch that drug again.  I tried gabapentin at one pill a day at 100mg.  Anyone taking Gaba will know that that is minuscule compared to the 3800mg most will end up taking.   One pill and I woke up with swollen eyes that were oozing liquid, dizziness, blurry vision, and chest pain.  Can you imagine had I taken a typical starting dose?

So my point is that we become dependent on most drugs given.  Your body adjusts to the chemicals it’s taken and getting off even the simplest drugs like Nexium will cause withdrawal in some form or another.  Our body has to readjust to the medications being taken away from our system.  So why I can’t I chose which drug I want to risk?  Why can’t I have a say in what I chose to put in my body?  Especially when I know what WORKS for me?

The stigma is real, the pain is real, and the problem is getting worse.  The pendulum has swung in the opposite direction and it’s far worse than it was before.  Because we are left suffering.  No quality of life.  I’ve made the decision that quality is much better than quantity.  It should be my RIGHT to chose that.  We should not be left to suffer.  What’s the point in asking a person’s pain level if they don’t care to correct it?  So here I sit, in pain as I wait for my next prescription, putting me back on my prior dosage after dropping to try something new that did not work for me.  So because of the laws, I can’t get relief now.  I have to wait two weeks for my next allowed time to fill so I can get the relief needed for my pain.  Today is my daughter’s birthday party.  I can only hope that my medication will get me through so I don’t have to suffer in front of others and I can enjoy her day as I count down to the day I can get a bit more relief again.

 

The link to Unrest:  https://www.unrest.film/

 

For now, I’m going to publish this.  I will pull up the studies and add them to my blog when the time allows as I need to now focus on my child and making her day as special as I can.  I will add them though.  They need to be seen.

 

https://medlineplus.gov/magazine/issues/spring11/articles/spring11pg9.html

http://europepmc.org/articles/PMC4026559

http://ajph.aphapublications.org/doi/10.2105/AJPH.2017.303906

https://www.researchgate.net/publication/262695649_The_damage_done_by_the_war_on_opioids_The_pendulum_has_swung_too_far