It seems like nearly every week.. I get a request to “like” another FaceBook page concerning some chronic pain or disease where chronic pain is a major part of the disease state. IMO, it is getting to be like a piece being removed from a puzzle of a picture of the real basic issues of the chronic pain community. As every piece is removed.. the “picture” becomes less and less definite of what it is suppose to represent.
It is like being a noisy restaurant/bar.. everyone is talking…but .. it is nothing but a ROAR… it is difficult to hear/understand the people at your table.. let alone what is being said by anyone else in the facility.
The DEA/CDC/PROP and others are speaking with a nearly unified/clear voice and they get others to regurgitate what they have said. While the chronic pain community is “talking ” from many points of view – about the same subject – but it may sound just like a ROAR to anyone listening.
To probably make things worse… the chronic pain community to a certain degree piles on with the anti-opiate groups about how BAD those who have been labeled as addicts… These people are just like those in the chronic pain community.. they suffer from the chronic mental health disease of addictive personality disorder. BOTH GROUPS are suffering from chronic diseases.
Our society believes that addicts are criminals … by the very fact that they have a mental health disease and is the chronic pain community doing more harm to those in that community by not speaking with a united/clear voice and by not point out not only are they not getting proper therapy but so are those who our society has labeled as addicts.
The common denominator is that both groups use opiates to help manage their disease states and thus those in power are using that very similarity to manipulate both groups… and to a certain degree getting the chronic pain community to help them, by condemning those that self-medicate their mental health issues with opiates.. to silence the demons in their head and/or monkeys on their backs.
Those 3-6 million chronic substance abusers are not going to stand up for themselves… they are too busy trying to get their next fix… and their ILLEGAL lifestyle. They do not want to stand out because it will probably just get them incarcerated and thrown into cold turkey withdrawal.
There are a few thousand of those trying to control the 106 million + with chronic diseases that use opiates.. it is sort of a Oligopoly where the few control the many.
IMO.. the chronic pain community doesn’t need more voices speaking from different platforms…. a disjointed voice… I think that the old saying goes “united we stand.. divided we fall”.. should apply to the chronic pain community
Filed under: General Problems
Amen Steve, that could have been our wonderful governments plan all along, to keep us devided and disorganized. Until the day we unite and organize the DEA and CDC will continue to gain all the ground in their war against quality of life. So many of us turn to you for answers because it’s been you doing the talking.
What would you suggest we do to stop the chaos and get a plan of attack? I’m willing to put time and effort into this defense of our right to live with less pain and I’m sure that there are many more like me out there. All we need is a General to plan the attack.
[…] Are we losing pieces of the “solution puzzle ” ? […]
Very true, RSD_Lady! It’s way past partying and fun for these people shortly after it started. They’re certainly not criminals and cutting our medications will also not help them any more than jail will.
When I see leaders in the pain community commenting this way, it’s so obvious to me why we’re getting nowhere on this side of the fence. We cannot win our war if we don’t present a united front. If our egos rule the day, it’s never going to happen. Hatred for people who are also sick and suffering is also not beneficial for ANYONE!
This was a very well stated piece. I have always refused to denigrate those human beings who suffer with addiction. So many times I’ve heard if it wasn’t for those damn drug addicts we would be getting on medication without any problems at all. Those filthy druggies and on and on and on. If addiction is truly a disease as it is now classified in the medical literature, we are the only country on earth locking people off because they have a disease. If you ask anyone who abuses heroin or opiates they will be the first to tell you that they are sick and tired of just trying to obtain drugs if you ask anyone who abuses heroin or opiates they will be the first to tell you that they’re sick and tired of just trying to obtain drugs to feel normal and not feel sick. Of course in the honeymoon days of abusing heroin or pain medication the person will feel good, euphoria and feel that all is right in the world. However, once the person becomes tolerant of the substance, it produces very little euphoria and it simply keeps them out of withdrawal. So when I would see these posts bashing those people who suffer from the disease of addiction I tried to gently educate them that it is a disease and the government would still be playing these little games because there’s something else driving the anti opiate movement. Can you guess what that is? MONEY.
It’s not a contest as to who suffers the most. The fact is addiction is a disease and those facing it need treatment, understanding and respect. There’s another group, chronic pain patients, who are forever linked with the first group, for no good reason. This group also deserves treatments, understanding and respect.
I have had pain advocates tell me they think all drug addicts should die, including my 27 year old niece, Casey. That was Casey’s age when she overdosed on heroin. Another administrator of a large pain support group said all drug dealers and addicts should die, but he was sorry about my niece. What???
Another pain advocate told me they, “Would go further in the pain community than I ever will.” I had no idea this was what the point was. I have missed the boat between activism and truly caring about the cause. Apparently, the objective is to get your name on videos, articles, groups, I don’t even know. I have no interest in this method of advocacy.
I just want everone to get adequate treatment without the government interferring. TELL ME WHAT WE NEED TO DO, I WILL DO WHATEVER I CAN. No ego trips, no names in flashing lights, just working TOGETHER to actually save ourselves.
Kim Miller PAIN ADVOCATE
YES YES YES. And it should not be that bloody hard to do! But EGO is a strong force!
Kim see my reply to your post below.
I appreciate your opinion, Kim, but I have to disagree with one thing:
“There’s another group, chronic pain patients, who are forever linked with the first group, for no good reason. ”
There is a good reason for this link, although most pain patients won’t admit it. I can’t imagine that I’m the only pain patient who didn’t always take her medications as directed. I can’t imagine that I’m the only pain patient who went to desperate measures to find pain relief. I’m not proud of what I did when I was desperate, but I can look back on it and say for a certainty that there is a very good reason pain patients and those who suffer from addition are linked.
On the other hand, I believe most desperate measures by pain patients are because we are addicted to pain RELIEF, not the drugs. If I was able to get a 25% reduction in the constant pain with the dosages I was on, then trying to find another 5% or 10% is just logical.
I think we know that treating pain with drugs only does not always work. I mean, wouldn’t it be nice if pain patients could afford a massage every day? If all pain patients had access to water therapy?
painkills2, the link between these two, I should have explained better as to what I was referring. I was actually meaning the connection where they take away chronic pain patients’ medications, and this causes addiction to go away. I feel there is no link at all between these two actions. Drug test me, pill count me (which automatically includes an additional drug test), make me visit the doctor every month, and there will STILL be just as many opioid addicts. This is why I said they were linked for no good reason.
They may not be getting it from the same place now, but nothing’s changed in the end except the outrageous amount of money chronic pain patients pay for doctor appointments and drug tests, the amount of time and extra pain involved in a pain patient having to go to the doctor so many times and drag a piece of paper to a pharmacist, sometimes in separate trips. The addiction scenario drags on, different drugs, maybe, but they still must have it.
As for pain patients automatically adjusting their own doses, each person must do what they need to do, but implications involving grouping the actions of an entire set of people is in some ways how we got lumped into this mess. I do not feel that is a fair assumption that MOST pain patients misuse their medications, but I’m certain you are correct that some do. This is likely a result of undertreated pain due to the overreaching laws and outlandish guidelines medical providers feel forced to make their patients endure.
You’re absolutely right. I have since changed my opinions on this and agree with you. Thanks for your honest feedback!
Hi Kim, thanks for your comment. It’s not easy to tell the truth about the experience of living with constant pain, just like it’s not easy to talk about addiction. I may not be proud of my past, but I am proud to have survived it. 🙂
Anyone who has any type of chronic illness, whether it be about pain or not, needs to be respected, including those who have to deal with addiction. For some, addiction is far more painful than any disease that creates physical pain. For those who have both addiction issues and physical pain I feel for tremendously.
I appreciate this post, Steve. As you know, I’ve been trying to get other chronic pain patients to understand that those who suffer from addiction are in as much pain as we are. If you don’t agree, please read this:
https://painkills2.wordpress.com/2016/01/30/hunger-pains/
Am feeling your frustration. We know the problems. We know the causes. We have solutions. We speak of rectifying wrongs but those that can put changes in place don’t listen. Those affected continue on with their daily struggle. I agree that without a united voice and an agenda for change the change will not come. This is true for many societal issues. One example, The Occupy Wallstreet movement gained momentum world wide but fizzled and died. Those with great intentions to better the 99% had no clear voice or specific agenda and the effort failed. Perhaps in today world we are to busy surviving our own day to day existence to care enough to speak in mass? It’s easy to quit but the strong and righteous will prevail. Keep up your hard work.
And yes Steve tour lost the story
Steve,
Prayers for all chronic pain patients. And all the ones that love them. The truth is, as you well know, there is nothing a doctor can prescribe in any strength or amount that will alleviate suffering. I have zero answers. Do you? Just don’t know where you are going with your endless angry posts against drug access. Put it all out there. We want to know. We want answers, if you are saying more narcotics help, and resistance isn’t an issue print it. Personally as a chronic pain patient and a pharmacist, I am troubled by your comments. Priscilla
Do you mean eliminate suffering when you use the word alleviate suffering. Of course pain medication will not eliminate suffering but let me inform you that it can take me from a level 8 pain to a level 4 pain. This allows me to take a shower and prepare food for my son. Any real chronic pain patient knows this. I have sincere doubts that you have chronic debilitating pain.
sounds like a true mess. OH MY