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. 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.