Thank you posting this Tuck and thank you for keeping us informed. It is so frustrating! We have enough people in our business already. And, our own medical care is our own personal business. At least it used to be. That is being taken away from us not little by little but so very fast.
My husband read this and was appalled. He said, you have got to be kidding, now the CDC is involved with something that has nothing to do with them?
Our pain treatment should be between us and our Drs. We so desperately need to get back to that but it just seems to be getting worse and worse.
It makes me wonder what's going to happen next. Are they going to start denying women in labor pain medications because women used to give birth naturally and women today should just endure the excruciating pain? I know that sounds crazy but I never would have thought in a million years that people that need pain treatment are being denied and that we would lose the one on one relationship we used to have with our Drs.
I think it was you that said, we can go to jail for letting our pets suffer but we human beings are left to suffer needlessly.
All of these new laws are so senseless. All it's doing is causing more problems. Chronic pain patients are left untreated, under treated, anxious and very scared. Not 100% of us, but one person is too many. We're losing more and more people to suicide because they just can not live with the pain. Or, some of them are going to the streets and buying who knows what. Addicts will get drugs anyway they can and many of them are buying more street drugs. You know all of this. You've taught me a lot but we may have knew members here that don't know and should be made aware of this so they can fight too. Sign petitions and talk to your Drs. Inform your family and friends so they can help with this fight too.
I'm sorry Tuck. We've gotten to know each other pretty well and you know it's hard for me to keep my feelings to myself. Especially when so many people are suffering needlessly.
I'll let you know if I hear anything more about this and I know you will let us know if you hear any more. Thank you again for keeping us informed.
I'll be watching to see if the CDC changes their guidelines.
If anyone hears/reads something more please update us.
Never apologize for venting your feelings here. It's one pf the reasons we are here. I vent too.
You're right. Our pets, and animals seem to obtain more compassion than we do. Ppl in chronic pain are made to feel like second class citizens at best. Often we are treated like criminals.
Our honesty is challenged at every turn - no matter how long we have followed all the rules we are subject to UDS and pill counts at the drop of a hat. That's even acceptable but when physician's cannot correctly read some of the UDS - we suffer by immediate dismissals. There are no second chances - you are not given the benefit of the doubt. You're out - left to withdraw on your own! There was a time that wasn't even legal.
I understand the physician's need to protect himself. He/She too has lots of hoops to jump through. It's not an easy road for them. That said they have had a knee jerk, overzealous response - thanks to our government.
Where are our rights? We have none, regardless of what we've been told. We are held as prisoners to governmental whims and bad policies.
We have a terrible drug problem in this country. Something needs to be done about it. However making innocent ppl suffer with undue and unrelenting pain is not the way to solve the rampant drug problems this country faces. Remember statistics prove that chronic pain patients that become addicts is somewhere around 4% - yet we are being punished. Prison or jail is not the answer, accept for drug dealers. Now the CDC gets involved. Really?
I hope everyone will contact their state and federal representatives. It's not popular to back us - but we have the numbers to change that - if we will take action. We have some astute medical practitioners, pharmacists and organizations fighting the fight. I hope this pendulum will swing back to fairness. Sorry for the vent. It's just a frustrating environment.
Keep the faith and everyone do what you can. We'll get through this together. I have to believe this will shake out in the end.
Thank you so much for this information. I agree with you and Remar. My husband is a pain patient, he has to jump through so many hoops just to get his medication it is ridiculous and expensive. His alternative solution is to to lay in intractable pain in back, knees, neck from falling off a roof doing construction and other accidents in his youth.
I think it is embarrassing that people can not live free of pain. The people in the streets have no problems getting drugs but real pain patients have to sign contracts, get tested, only go to one pharmacist, one doctor, etc etc. God forbid you go to the dentist for a root canal and take something they give you.
Sorry just frustrated
So true Tuck. I was just going over a pain contract online. My primary Dr informed me yesterday that her office will no longer be treating chronic pain patients. This has been my worse fear for 22 months since my pain started getting worse. I hate to loose her! I knew it was going to happen at some point though. The first clinic I called would not see me because I have no insurance. Hmm, my vet will see my pets and they have no insurance. My Dr did give me the names of 5 pain Drs so I was online checking out the second one and reading their contract. It is crazy! I can not believe the very intimate things they ask. And then there are the things they expect you to do. If they call you for a pill count or urine test you have to do it within 24 hours or be let go. What if a snow storm happens, what if we have the flu? Just reading that contract made me sick. They have all these rules for us but what about them? How can they possibly know how we feel and what are pain is like unless they have been there? I hope everything swings back too. My Dr told me yesterday that she sees that happening. I said, really? I do my research every single day and things are only getting worse. CPP are suffering, they are being let go from their Drs because urine tests are only 95% accurate. We're loosing CPP's to suicide because they are not being treated or they're being under treated. I can no longer have a personal relationship with you as my pain Dr. Someone I completely trust and you completely trust me. How dare that be taken away from us! She knew I was very upset and she understood why. She said that it was not her decision to do this, that there are 3 other Drs in her office and she was basically out voted.
I'm so upset that we CPP's have to live in fear every single day. All I can hope for myself is that I do find a really good caring pain Dr. I may have to see several before I decide on one. This means a great deal of money and time and there are so many of us that are going through this very same thing.
Tuck, you are my dear friend so I already know your struggles. It's so unfair that you're pain is being under treated. It just breaks my heart.
Dee, I'm so very sorry to hear about your husband. He should not have to go through all of that just to get what he needs. None of us have made the choice to have this pain. If we could make it go away we would all do it in a heartbeat. Oh, and another thing I'm getting tired of hearing from Drs is this, do not expect to ever have a pain level of 0. It is very possible for many of us to have no pain with the right treatments. It's like the Drs are saying, feel lucky that you're getting any degree of pain relief.
I'm so glad we have this forum! After yesterday I needed to come here to vent. Thank you girls for letting me do just that.
A place to find petitions is change org. I hope I'm allowed to post this. Just look around for chronic pain petitions and read them well before signing them.
I was going to start a new thread but couldn't find the ask a question on this new version.
Anyway did anyone watch or hear about "DR OZ " Today? Well he is on board with new restrictions and worse for chronic pain patients. He had GENERAL SURGEON on his show today. Had someone going dr shopping to get pain meds and how easyit was to get them. Personally I felt like going thru TV. My experience has been jumping thru hoops than act of Congress to get them than pharmacist treats you like a junkie! !! Anyway maybe he's been on board with this I don't know, nor do I watch him normally. I feel with his power and following this could be extremely worse for all of us. GEEZ! Did anyone else watch this or knew about his involvement, if so what do you think?
Anyway thanks for reading my vents.
Hi, after reading your journal and doing some searching I found this survey, thought you might be interested. The first time I had back surgery 12/23/13; I was treated terribly was not given pain meds, it was awful. This last time the people could not have been kinder, I did not wake up screaming in pain. I can't imagine what chronic intractable pain feels like and I bet the people at the CDC have no clue either. No one should be be curled up in a ball in pain. That is not living. Thank you for this thread and your journal.
Thanks for sharing the results of the survey conducted by the Pain News Network. I did see that survey and I think I participated. It reflects how many of us Chronic Pain Patients feel.
The Pain News Network is one of the few organizations that actually fight for the rights of us to obtain proper pain management - in all forms. Most organizations have ceased to exist - I believe that's largely due to the Opiate-Phobia that has been generated by the media and DEA than gobbled up by the uneducated public. There's more to it then that - but the aforementioned appear to be the initial ball rollers.
There are still a smattering of compassionate, opiate therapy educated medical providers that truly understand chronic pain and how to treat it. Sadly those numbers are dwindling.
Unfortunately some - maybe many in the medical community don't comprehend that when treatments and procedures fail or aren't even a valid choice - opiate therapy often provides a safe and effect alternative. When opiates are prescribed and taken responsibly they can make a huge difference in one's quality of life. Proper pain management can take a person out of bed and make them not just a functioning - but often a productive member of society.
My research reading tells me that due to this change in opiate therapy, suicide is on the rise in the chronic pain population. Way too often these suicides in our population is hidden by labeling them as an "overdose."
We can't even be heard when we chose to end our life Plz don't get me wrong - suicide is never the answer. That said, as one that has lived with chronic pain for many years I do understand how fatigued, frustrated and defeated you can become in the climate. When tomorrow only seems to bring another day of unrelenting, irretractable pain - what is there to looked forward to? For me it's hope and the determination to make a difference for those that will come after me. Some days I can't manage more than a few paragraphs here - some days I can't even manage that but I know there are others that can't even manage that one paragraph a week! We must fight - the best we can - for them.
It's a very sad situation - one that I don't see improving in the near future. Doing nothing to change this is not an option for me. I hope it won't be an option for others that read my words. if you are reading my words and are concerned with this current state of affairs then ......
......Contact your local, state and federal elected officials, join or begin a petition - respond to surveys - do what ever you can to make your voice heard for adequate pain management for all chronic - and acute pain patients.
Yes I said acute pain. I'm hearing more and more stories from friends, family and acquaintances that relate their surgical experience - or serious injuries to one of an agonizing painful period. No opiates after the first or second day post-op - no opiates for fractures, even those that are open reductions - no opiates for severely torn ligaments and no opiates, no opiates - the list goes on. You don't have to be a chronic pain patient for this new opiate-phobic climate to effect you.
There's more to say - or explain but as usual I've rambled. ;0) Excuse me. I'm passionate about this apparent lack of caring displayed by the government - (trickled down to our medical providers) in what they have inaccurately termed, The War on Drugs.
Thank you Tuck, I really appreciate your enthusiasm on the subject. It is dear to my heart because of the awful pain my husband went through when one doctor disappeared and I had to find another one. hard to watch a loved one go through pain.
I am confused about the doctor on Dr Oz saying it is easy to go doctor shopping. Doctors now have the ability to go in to a program place your name and birthdate in the system and check to see what prescriptions you are on. I thought it was US wide. Maybe it is just in my area and surrounding states?
When I went to a new doctor, before I filled out any paperwork they had all of my prescriptions in front of them.
So this doctor that was on Dr Oz is behind the times
Thank you again Tuck, Dee
You've asked a good question. Thank you.
No Dr Oz is not behind times - he's actually a bit ahead of time. This ability to check your RXs nationwide is not yet nationwide. It's a goal and it is getting better but it is not all encompassing.
In FL for example, they have the ability to check one's RXs state-wide and check a few neighboring states, not even all neighboring states. It is a goal for every state to be on board but it's not yet happened. Not all states are reporting nation-wide. I'm told the software is very costly and the process is a daunting undertaking.
I for one will be glad when all states report and when all states have the ability to check our RXs. I have nothing to hide - as most of us don't.
"Doctor Shopping" is actually illegal in many states - even if you are not seeking opiates. I think that's more than ridiculous. If I don't like a particular physician and look for another - and than something occurs that I have to leave that 2nd - or I simply don't have a good relationship with him/her and now am forced to find a third, that can be viewed as illegal Doctor Shopping.
This Doctor Shopping law was initiated to stop ppl from obtaining opiates from multiple providers. I get it - and for that reason I agree. However, in my opinion the law - as with most laws - ended up infringing on a person's rights. We've lost the ability to find that "right" provider. We gotta get it right the first change - or at least the second. You could be "stuck" with someone that you are totally uncomfortable with - and may not even be interested in you - or in my case may not be interested in treating my complex medical status.
I appreciate your interest in this arena. I wish more ppl were interested and up-to-date. Many don't care until it effects them - and than it's too late. The laws have been passed and there's little recourse. But I'm rambling again!
I'm a little late on reading the recent comments. I did not see the Dr Oz show. He does carry a lot of weight and doing a show like this right now was not a good thing for us. What wold he do if he were in an accident or his back started failing and he was denied pain medications? What if was a member of his own family, would he say, the pain can't be that bad so no pain meds for you? I highly doubt it.
Tuck, you are so right. It's a fact that we CPP's do so much better when we're on the right kind of treatment. If we're in excruciating pain most of us can only lay in bed or on the couch because we're not able to do anything. Every part of our lives are effected. I know that without my medication I can't do any housework, go grocery shopping, visit family and friends. All I can do is lay in bed and cry. There are so many of us that go through this because we're not being treated or we're being under treated.
Yes, people with acute pain are being denied opiates too. My nephew broke 2 of his ribs. I was the one who took him to the hospital. He was in so much pain! They did give him a script for a few Tramadol. Many of us know this med does next to nothing for pain. I did ask if he could get something different because he had taken Tramadol for dental surgery before and it did nothing for his pain. They refused. How could they let a young man with two broken ribs go through that kind of pain? It's inhumane and it is indeed happening more and more.
I do care, I would care even if I were not a CPP myself because I believe no one should have to suffer needlessly. I do sign every petition I can find and had hoped to start one myself.
I don't see how it could be easy to Dr shop. My PCP will no longer be prescribing meds, something I already mentioned. When I called the first Dr she recommended they wanted to know a lot of information and that included who recommended me. They wanted to know my name, birth date, what my medical condition was and my Social security number. I did not give that to them and said if I were to become their patient then I would give it to them. You just don't give that number out over the phone to someone you don't know. Anyway, I see things really changing with Dr shopping. I do agree with Tuck and I think it's so unfair if you're stuck with a Dr you don't like. We hire them to take care of health so if they're not doing that job then we should be able to check out other Drs.
Your stories are heartbreaking and many times it's hard for me to get through a post without crying. No one should have to be in so much pain and know that when they wake up the next day the pain will be there again. We have the medications and ability to keep most every persons pain levels way down. I just can't believe that we have people who know nothing about chronic pain telling us that we will do just fine on a certain amount of meds. Many of us are supposed to do alright on 2 to 4 pills per day when we all know we're lucky to get 2 to 3 hours worth of pain relief out of that pill. We spend most of the day in excruciating pain.
I've written a very long comment, again. Sorry about that. This is all so frustrating and so unfair to any CPP.
Thank you so much again for keeping us updated Tuck. I know how hard it is on you to do this work because of your pain so it's even more appreciated then you could ever know.
Thanks for your input and comments Remar. As usually you are insightful. My heart goes out to you for the CP than you must endure and the issues you have faced trying to locate a PMP. It's just unfair.
Sadly Dr. Oz is following the new trend brought about by Pill Mills, Abusers and Sellers. The DEA, FDA and now the CDC have waged war on CPP (Chronic Pain Patients). They say it's the "War on Drugs" - but it's far from that. Suffering is up, way up in the general population to say nothing of we CPPs.
Indeed a friend of mine's dog had a surgical procedure several weeks ago. When we were chatting she said she had to give her dog another pain pill cause he was hurting and couldn't function well yet. I couldn't believe my ears when I heard that three weeks out this dog was still getting opiate "pain pills" - three weeks out!!! That is more than a human is allowed today. Does that make any sense??
Don't get me wrong - I think animals should not have to su
Sorry - some how my last comment posted I finished.
I was saying...... Animals should not have to suffer either. My point is that vets are allowed to control our pets pain better than physicians are allowed to treat we human's pain.
I am hopeful - I have to hope - than in a few years this pendulum will swing back. Medical practitioners will once again be allowed to use good judgement in treating their patient's pain.
And that's it for now. I'm getting off my soap box. :o)
Just my thoughts! Praying if you have pain - acute or chronic - that it is well managed.
Tuck, I understood exactly what you meant. I'm a huge animal lover myself and have several pets. There's nothing I wouldn't do for them. But, you are so right, our pets can be on pain meds for as long as they need to be.
I found the Dr Oz episode but have not watched it yet. I have limited megabites during the day so I'll have to watch it at night. People were able to make comments and I did just that. I think since he did this show on how bad pain meds can be it's only fair that he does a show with chronic pain patients and what we go through every single day.
I was able to find a couple more petitions yesterday so I signed them. Remind me if I sent you the website, If I haven't done that yet I will.
You're so right, there is more and more suffering in the chronic pain community. This is inhumane. I hope things will swing back the other way but right now it's not looking good.