Chronic Pain Patient Reaction to CDC Guidelines

Chronic Pain Patient Reaction to CDC Guidelines

By Ed Coghlan

When the Centers for Disease Control announced the new guideline for opioid prescribing, many pain patients complained. Mostly, they wondered why doesn’t the CDC (and the rest of the federal government) listening to the issues facing chronic pain patients.

The National Pain Report asked the US Pain Foundation for a comment on the guideline. Rather than a comment from their leaders, they pointed us to the organization’s Facebook page, where pain patients were reacting, mostly negatively to the new guideline.

The Foundation posted on their Facebook page the following: “I hope everyone is proud of themselves for how they stood up to the CDC. Sadly in the end we were not listened to and they already made up their minds. Don’t give up because we are not. We will do what it takes to have patient voice heard. Give us your thoughts:”

Here is what some of them said:

 Christine Grable Lewis:  “I’m so tired of people who don’t have a clue about how we feel telling us that we don’t need pain medicine or it’s all in your head. If that was the case then there would no need for them to even make these types of pain medications.”

Nicole Delancey-Border: “The CDC says over-the-counter pain meds should be used first. I don’t know a single person that has pain that didn’t start there. Most people take fist full of OTC for years before they seek help. OTC pain meds are just as dangerous if not more so than other types of pain meds. I have a 19 yr. old with pain and no one will help her. She is going to die with all the OTC meds she takes. To be honest I don’t think it will come to that. She tells me once a week at least she will take her own life. And to think the gov. is worried about people in pain taking heroin. I don’t see the connection people who have pain if given what they need to control their pain will not seek street drugs.”

Roberta Henry: “I’m very disappointed in the CDC. The government has NO business telling doctors what they can and cannot prescribe for their patients. And, heroin should not be categorized in the 40+ deaths they claim take place daily from painkiller overdose. I say this in all seriousness…without painkillers it would absolutely be difficult for me to walk, to do the chores, and even to shower! I’ve been sending twitter messages to everyone I can think of regarding this issue, and have sent letters to my congressional representatives. I will continue to do that, but I’m not sure it will help.”

Alana Alexander: “It is time for a class action law suit against CDC and DEA. They are destroying our civil rights as Americans to access available medical treatment so we may live a life of freedom and be functional in society. This is a Medical Discrimination that passes cruel and inhuman punishment until you sue them they will not listen!”

Staci Lynn Dangerfield: “So frustrating.”

Here’s a link to the US Pain Foundation Facebook page: https://www.facebook.com/U.S.PainFoundation/?fref=nf

Here’s the National Pain Report story on the CDC guideline, check the comment section. (Click here)

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Authored by: Ed Coghlan

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Krissy

Hi Tim: I have some background in this from my own experiences. I’ve found that almost everyone who applies for disability gets turned down the first time, then has to do it again. If this is is still true, I would apply alone the first time. But you have to have a disability attorney after that. It is so much worth the fee (which you don’t pay until you get rewarded with your first check or bad-pay) because they know so much more than we do and I’ve heard it over and over again, never to try without an attorney. Granted, this was in 1999, so things may have changed, but a chat with an attorney will help. If you don’t want to go through the hassle of getting turned down then going to attorney, make sure you have a disability attorney who has a good, strong background. I believe they all charge about the same , but again, I’m going a ways back. (As we know, not much in government changes very fast!)

Good luck — talk with more people who have been through it.

For your work, you can go on to work but only make a certain amount of money. This is listed on the Medicare.gov site. So it is similar to when one becomes of age and takes his social security.

JackH

Hi Tim,

For me it was a long long process and I finally gave up because the state hired physicians who “proved” that I had no disability.

I am hoping that your process will be shorter.

To get an idea as to where you start you can go to your states web site and search for “Disability”.

For some states if is right on the home page.

Also, you should contact Social Security to begin that process on the Federal Level — search for the web address. They might be able to help you there too.

I advise you to talk to a social worker who will act as an advocate for you and be very careful to have your physician prepared to refute the state’s hired physicians if they do say you do not have a disability based on their exam and assessment.

In addition, there are great food banks and other assistance for some in communities that provide this. I would check that out and ask your doctor too.

I hope that this helps.

They have billions at the Federal

Tim Mason

I think all of us posting here have a great deal in common, failing skeletal, muscle and nerve function. I too, have seen a major changes in my ability to keep up with the physical demands of work. What used to be effortless showers, getting in and out of the car, standing on my feet at the lab benches and constantly getting up and down from my desk to go check on my analysis have become much more debilitating. My work day is now more like 7 hours on Monday and decreasing to 5 or 6 on Friday. My type of work, analytical chemistry, is not physically demanding and lifting tasks, stairs and many other activities were handed off to younger employees. My neurosurgeon wrote me a letter to take to my employer stating that I was to work “as tolerated”, no stairs, lifting, prolonged standing etc. I have only disclosed the contents of this letter to my immediate boss. I read that a worker did not have to disclose his exact health condition(s) but they obviously know about my surgeries. I am 58.5 years old and like others, I still have a great deal to offer younger college graduates just getting their feet wet or expanding their careers.
I have been told by my doctors that I quality for disability but I still need another hip replacement and enjoy the benefits of employment.
I struggle everyday to make it to my job and starting about noon, weakness and tingling leads me to staying seated as much as possible.
I have osteoarthritis and it affect my entire back, neck both hips and SI joint. I have started putting all my medical information into the social security website.
My question is this: How does a professional, whose brain is still functioning well, obtain disability benefits and still get paid for his contributions to his/her field of study?
Can BL or any others shed light on my question?

Krissy

Thanks, BL. I have RA in my hands too. And the elbow thing – it made me giggle. Sorry, not being mean here, just thinking of all the weird positions I’ve got into and then got stuck for awhile 🙂

Take care!

BL

Krissy, the neck problems can sneak up on you. Please be careful. I’ve also noticed that sometimes I have problems with one of my arms. Then I notice that I have been leaning on one of my elbows without realizing it. When I correct my position, the pain goes away in a few days.
I do a lot of reading. The typing is difficult because I have nerve damage in my upper extremeties and I also have Rheumatoid Arthriis in my hands. It still feels weird laying down and trying to type, but I can’t walk or stand well or for long. I am Thankful to be able to still do some work because I miss working. I enjoyed the work I did and the people I worked with, The work you have done sounds interesting.

I’m 62 now, and I have learned that being disabled and/or getting older doesn’t mean you have nothing to contribute, it just means that what you have to contribute is done differently that the way you did it before and differently that others may do it.

Take care of your wrist and yourself.

Krissy

Hi BL. I caught your reply to Jean. I am in the same position (no pun intended) in that I am on disability and work laying down. I often wondered how fast I type while laying. Sideways data entry — like anything else, you learn. I broke my wrist in two places about 2.5 months ago — that made it sideways one-handed typing. Not fast! My background is marketing communications, research, writing and art direction and owned my firm for 27 years, plus developed and owned an historical newspaper, and was a publicist and spokesperson in the emerging computer industry beginning in 1980. I really just wanted to mention the laying down and working thing. I’m amazed I don’t have any neck problems! Take care. (You too, Jean, take care!)

Krissy

BL

Jean Price, I have chronic severe pain and I am on disability now. Thanks to the pain meds, I am able to still work a little, but nothing like I use to. Most of the work I do if from home and I can do it on my laptop, laying down when I need to, which is often. I have a medical/legal background.

Jean Price

BL…just curious if you have persistent pain, too. Or if you are on disability since you seem to know a lot about these issues and medicines. If you’ve ever said, I must have missed that.

JackH

Hi Anon and Readers, Anon, I am saddened over your daughter’s struggle and resulting tragedy — it is so hard to lose a loved one especially when it is caused by something that might have been prevented. This is part of what we had hope would be addressed by the war on drugs but it has not made a difference. So many drug users do not seek help because of the rehap industry where the indoctrination can be very cruel. You are so right that prohibition did nothing and historically only has made those who are into illegal drug distribution very rich and powerful. I believe that you are correct that the main reason is for power. Why now though? I don’t get it. I’ve never seen this level of hype over opioids an narcotic pain medication with articles appearing almost every day. Legislation will never stop the sources from distributing their illegal drugs. I do not think legislation can control human beings behavior very well. It has never stopped the continued use of marijuana and drugs in this country with so many people sitting in jails. Chronic pain patients cannot be discarded because there are some poor practices by some physicians (very few as far as I know). However, I do not for one second believe that physicians are the source of this opioid problem compared to the huge amounts that I read are available on the street which is where people who don’t need these usually go versus getting sustainable supplies from physicians or ER. I have yet to see the actual figures on where the real source of these drugs are coming from and how many die from which source. This should be provided so we understand what is going on and physicians do not get hit as if they are the blame. As “Patricia McLaughlin” said above, pain is real. Most people have no desire to fake pain and just want to get on with their life. I sympathize with your condition and I believe you that you were careful to control your medications. You would have known if the amount you had was suddenly less that what you had on hand. You then would have been in more pain because the rest were gone — it would have been obvious. I have a gut feel here that something else is going on with the government’s involvement with pain medications and the CDCs, setting up all of these rules and have scared physicians that they will lose their license if they do not comply. I don’t blame the physicians for their reactions; they stand to lose their professions that they worked extremely hard for and paid hundreds of thousands of dollars for. I’ve had doctors try to get me to take THC which I do believe is not only safer but I have this stigma regarding its use since I’ve seen so many classmates who use this never progress. I realize that my fear is most… Read more »

Annon

Hi JackH,
Power. Most of the politicians who acknowledge that the “war on drugs” is a failure are the same ones saying that we should have a “war on opiates.” While it has become a majority opinion that we should end the war on drugs and, at minimum, marijuana prohibition, pain patients are a minority. The more beloved celebrities die from overdoses the more the general public is willing to give the government power to “stop” these things from happening. They have no problem sacrificing pain patients, patient-doctor confidentiality, etc., if they think less people will die from overdoses. They don’t mention the pain patients because most of us are solitary, or they make claims like “if you only knew how horrible it is to see a loved one’s life ruined, you’d support our side and give up your meds and sacrifice your quality of life.”
I am one of those people. I lost a family member to an overdose of illegally-obtained pain medication. If anyone ever told me that I don’t know what that feels like, I have to laugh. They assume. I’ve seen it ruin a life, I’ve seen it harm the lives of those who loved her, myself included.
But I do not believe I should be punished for someone else’s illegal choices. She did not get her pills from me, ever. She didn’t even know I had them, as far as I know. I never took them around her. Most of my family would agree that I should not have my quality of life lowered because of her choice.
But to a politician, it’s additional power over people’s lives when they say “I’ll let you do whatever you think will work to gain the illusion of safety!” It is an illusion. While trumpeting prohibition the actual causes of drug addiction and the safety of users is forgotten. Prohibition didn’t save her life; she had been told over and over again not to use at all. She stopped for about a year (as far as I know) and then took her old dose and died. Education solves this problem. Honesty solves this problem. If instead of “DON’T EVER DO IT EVER AGAIN!” she had been told, “Look, we’d all rather you stop and don’t do it again, BUT if you do make that choice, please don’t take your old dose, take a smaller dose or it may kill you.” But we can’t be honest, because honesty isn’t policy and doesn’t allow additional control over people’s lives. And as some people are pushing for us to hand over more and more of the healthcare decisions to the government, in exchange for them paying, the patient is no longer the customer and no longer the priority.
Our country loves prohibition, and the government does not care about those who are hurt in the process, even when it’s the very people they claim to be protecting.

BL

JackH, the new laws and guidelines were done to save lives and reduce the rise of addiction associated with opiates. I can assure you that the views of someone addicted to drugs or the family of someone who had died from an overdose weighs far more than that of chronic pain patients. The cost of deaths and overdoses far outweight chronic pain patients not being able to function without pain meds.

Another factor is that chronic pain patients have not been anywhere near as visable and vocal as ex addicts and the families of those that have overdosed. The reasons why this has happened does not matter because the result is the same.

Another factor is that there the percentage of chronic pain patients that say they can’t get adequate pain management is small compared to those that are receiving it. If half of those needing pain management were not receivng it, that number of people being consistently vocal and visable might have made an impact. If a chronic pain patient can’t get pain management because they have broken the rules or because they refuse to decrease their meds, they aren’t going to be listened to. The vast majority of those that have died were on high doses of opiates. The fact remains that drs cannot safely increase opiates past a certain point. It is far better for someone to adjust their life style and decrease their meds than to not have them at all. It is not easy and there are things that may have to be sacraficed, but that happens as we get older anyway. It is common when someone can’t function doing basic things like showering, getting dressed, preparing meals, etc that they have to go into a nursing home or someone has to be hired to come in and help them with these and other activities. If there was a sudden drastic increase in nursing home admissions soley due to a person not being able to functon due to chronic severe pain and a lack of pain management, that number might have made a difference. Same thing with the requests for someone to come into the home to assist these individuals. What one person considers not being able to function does not have the same meaning for someone else.

For those that say the drs are the problem, the drs are trying to correct the mistakes they made by listening to the pharmaceutical companies yrs ago.

JackH

Is there something else going on that the government is not telling us for the reasoning behind these laws that prevent us from receiving pain medication? If they are not listening to us I smell a rat and a negative plan that is withheld from us. Given all of the complaints and action there must be something going on.

Any clues?

Krissy

Tessa, I just read your comment and I feel so sad for you. You have been through way too much and I know how that makes life seem sometimes — like wondering why all this? And how did my life turn out this way? What is this pain with so many illnesses connected together, but that cannot be figured out by medical science?

I just wanted you to know that you have friends here and we care. We are all working to try to make a difference, and with your knowledge, I can see that you are also. I hope and pray things will get better for you…and everyone else in this life of pain and illness. Keep telling your story, and I hope you have some good support on Facebook groups as well as at home.

Your new friend,
Krissy

BL

Tessa. you need to file for disability. There is criteria for the impairments that you have mentioned. You do need good detailed medical records stating the details on how your impairments directly interfer with your ability to do activities of daily living. Have you discussed with your drs these details and read you rmedical records to verufy that it is written down ? Do you medical records contain the info listed at the link below for fibro ? If it was one of your drs that told you your conditions weren’t severe enough for SSA disability, you need to change drs. Do you know if you have enough work credits for SSDI ? If not, do you meet the financial criteria for SSI, if you are found disabled ?

Evaluation of Fibromyalgia-
https://www.ssa.gov/OP_Home/rulings/di/01/SSR2012-02-di-01.html

Tessa

First off, I did not go to my doctor asking for any type of pain medication 17 years ago, I asked for help with severe neck pain that i was referred from the er, to a neurologist, He did xrays and found i had bone spurs on my neck and had degenerative arthritis, that was the start waking up in severe pain where my head felt a hundred pounds and not being able to turn my head at all. Wearing a neck brace to sleep in and almost every day. I got put on several different medication like elavil and anti-inflammatory meds which helped. I had low back pain also but at that time heating pad did work pretty much with that and bed rest staring at a ceiling because i couldn’t sit up even with pillows. I got pregnant with my son and had migraines for many years, of course i had to come off of all those meds and was in such a fix i couldn’t take care of my family at all, so i called my obgyn and they put me on meds they said was safe for my unborn child which was fioricet for my migraines and hydrocodone. Later i was hospitalized with cervical cancer and refused to have my babies life terminated at 20 weeks. The team of doctors had me on bed rest because of the constant bleeding that kept happening. while in the hospital, for 2 months trying to save my babies life, they were giving me my medication in there, after my child was born, which they took him early and had to be put in nicu, for two weeks, when i went to the hospital after i had already been a mother for a 13 years as social worker came to visit my room and said i tested positive for opiots, which i didn’t even know the difference. I was told it was a narcotic medication, i told her that was impossible since i had been in the hospital all this time except for 2 hours i went home months prior, i had to be readmitted to the hospital. If i tested positive for anything it was because that hospital gave it to me, so i left the hospital and was extremely upset that they didn’t even read my chart just assumed i was some type of criminal. I had my husband pick my baby and me up from this hospital and never went back, took my child to the doctor the next day to make sure my child was okay and should have sued this hospital but I let it go. Besides the neck pain which i tried to work through with my job, i got put on hydrocodone and a muscle relaxer so i could continue to work, but the pain was getting worse, so i came off of the meds and went back on my daily doses of tylenol and bc powders and just stopped going to the… Read more »

Tim Mason

Cecil, We are living in an age of mass complacency. The moves made by the CDC and DEA were made through loop holes and lack of concern on the liberal side of the fence. No one really wants to do their job anymore. It is Obvious that the current administration in the White House only came there to destroy and take money in the process.
Every point you made seemed 110% valid to me.

Cecil

The government over-reach in this case will fuel problems for the Democratic Party for years to come. The fact that the CDC did this and in doing so was able to do an end-run around FDA and all of the normal legitimate stakeholders in the development and approval process for medications is unprecedented… but as other contributors have pointed out the DEA and CDC seem to have ulterior motivations. What contributions did the Federal Drug Administration’s Center on Drug Evaluation and Research (CDER) have in the process of decision making? The fact is that, we all can likely agree that there already was a frigid climate when it came to opioid medications and doctors who prescribed them (legitimately). Doctors were afraid the DEA would come in and arrest them for caring for patients and put them in jail after taking their licenses. Indeed, it happens frequently. Now the environment is such that we are so close to the edge when it comes to Anarchy as a casual response to governmental behaviors and actions over treating serious pain patients… that violence on the macro and micro levels appears inevitable. The suicide rate will go up as well as the crime rates. Of course the IRB or Institutional Review Board who approved the paper and so called research now has lost all credibility. Most any of us who, in the pursuit of our degrees, were required to write well for our dissertations knows intimately how wrong this paper is. The fact that One (1) paper is all it took to icing the cake of this biased decision speaks volumes for the president and his administration. Any Behavioral Analyst worth their salt would look at this, as well as the many other artifacts in the administrations historical timeline, and concur that there is cause for deep investigation. Why was the FDA’s IRB not used in the process? Perhaps is it doing to the manipulation of data at the highest levels that we see biased ‘clinical investigations throughout the sorry excuse for a professional paper? Certainly there is a strong case to be made when the contributors have an agenda. One possible punishment might be to strip all participants of their degrees and licenses for life. While that may seem absurd to some or even many… it would pale next to the suffering these persons have individually and organizationally done, with forethought and malice, to serious pain sufferers in the nation. On the other hand, maybe we should all go out and smoke marijuana and eat ‘edibles’ so that the investors in that market niche will become billionaire players overnight in the treatment of pain. Ultimately comparing our nation to Europe or other nations is a poor argument as our healthcare model is far drastically different from any other in the entire world. The timing of this drastic measure is also in question when comparing it to Obama Care and how poorly it is still ‘Rolling Out’. Many have commented on it here; why… Read more »

Tim Mason

My pain management doctor is a specialist. He has excellent credentials from UAB, has a degree in anesthesiology and pain management. He is not some quack that could not make it in mainstream medicine and chose pain as a practice. When another disc went out above a previous fusion my images indicated an extruded disc, nerve roots encased in scar tissue, etc. My neurosurgeon suggested some physical therapy and I reluctantly agreed. The facility he sent me to is well respected for spinal injuries. And yes, I got all the lectures about my “core” and how I needed to work on that. I was skeptical of this but they were right! I needed to stop bending at the waist and now I can “squat” to pick small thing up. I worked on my posture and I no longer twist at the waist but instead turn my whole body to speak to someone or do a task. I have no doubt that my willingness to try PT reflected indicated to my doctors that I was willing to have a go at it. They also have a hot tub and pool which I have found to be very helpful. My copays over 30 visits was about $600 dollars. That is like 15 weeks and payment plans were available to pay for this. The fitness center located in the same building costs $39 month with everything available. The equipment is designed so that even someone in a wheelchair can do upper body work. There is no intimidation by other members because 99% of the patrons are gray headed, in bad shape.
I have to give my doctor(s) the opportunity to treat me. I also get the occasional injection into a hip or shoulder. I have never said “well I have been on morphine for two years with Percocet and I want to go to Fentanyl”, or “I want something stronger.”
Where I live the abuse rate is highest in the nation, according to the statics.
I read an article once, and I am sure it is still out there, but it discussed why doctors are so irritated and how to let your doctor diagnose you, treat you and prescribe for you. I think if someone finds a good doctor, especially a pain doctor, and you need him/her, Treat them like they you would your mother or father and not your mother-in-law or father-in-law.
Once your relationship is compromised with your physician, you will need to look for another one.

Richard Oberg M.D.

Robert – how the CDC can peddle this nonsense without anyone in the media questioning anything is beyond belief. I’ve been asking the CDC about their statistical nonsense for two years now and getting a drone repeat of what’s already there – a case of complete insulated gov. unaccountability.

The CDC is playing the statistical game of ‘trajectory’. What that means is classical statistical misuse of percentages. It doesn’t matter if endemic problems like death/complications of alcohol or smoking far outweigh opioid issues if they’re relatively stable but extremely high. With prescription opioids they’re about half of auto accidents (the claim to the contrary is totally false and auto deaths have increased to boot), but since they began lower the percentage increase is much higher which is all anybody looks at. The absolute numbers are what’s important but all you’ll see in the media is ‘300% increase’ – same as 1 to 4. Would 3 more people be considered an issue compared to its statistical increase?

And frankly no, ‘pain management specialists’ aren’t necessarily the place to be and depend on where you live, what you have wrong, and what they do. Ours are ex-hospital based anesthesiologists who left hospital practice to set up their own interventional pain centers and there aren’t many of them. One here does bogus hyperbaric oxygen therapy and all sorts of goofy stuff insurance won’t cover and for good reason. Problem is, if you don’t have something amenable to that you’re often out of luck. Here they aren’t interested in scripting for pills and soon it’s going to envelope the entire country.

Addiction rates will also continue – as our state’s prescriptions have dropped 25% since our new state regs went into effect, the death rate continues to climb due to heroin. Once there are no more prescription opioids, I wonder if they’ll continue to blame them for heroin.

Odd that for such alleged highly addictive meds, the first decade of increasing use for chronic pain didn’t see any massive death/addiction problems which didn’t really manifest until the great recession of 2008 hit….. hmmmm.

It isn’t rocket science and Kolodny and Co. are capitalizing on it all because our media is no longer the fourth branch of government. That’s what’s killing us.

Tim Mason

I went for my bimonthly visit to my pain management doctor last week and nothing for me has changed. Reducing my medications or taking them away was not brought up. In fact, a muscle relaxer was added. A new MRI of my Lumbar was submitted by my neurosurgeon in January as well as a CT scan.
I simply as not seeing or hearing what everyone is talking about.

Criminal hypocrites! Tobacco kills over 500,000 per year. Alcohol takes 90,000 per year. The CDC claims that 14,000 to 16,000 to opiod overdose. Are they full of lies? Absolutely, but they make big tax revenue on the first two. With most opioids being generic, big Parma doesn’t make money. Only 2% of legally prescribed patients abuse their pain medication. They use it to have their constitutional right to Life, Liberty, and the pursuit of
Happiness. They want to take walks, go out with their spouses, cut the lawn and live the life of all those CDC hypocrites.

Tim Mason

Em, I have found that a Pain Management Physician is the place to be. This is all they deal with. What happens though is that you my start your treatment over at some medication at a low dose and go from there. This is in part due to Insurance requirements and to make certain the patient is not overly medicated. The patient comes every month to see how you are doing and to make sure the patient is taking the medication as prescribed and that no other pain medication or street drug has been consumed. The technician will do a CLIA waved test to make a quick determination about your specimen. This protects the doctor, the practice and the patient. Once established with a pain management facility, they will periodically send the urine off for a GC/MS/MS and there they can detect extremely small quantities of drug and drug metabolites and can determine how much of any drug a person has taken. This is the least invasive test they could do. They could take blood or even hair. A hair sample can determine drug intake back to three months and if the hair is long enough, a year is not uncommon. In my opinion, a urine specimen is not a lot to ask of someone. It keeps honest people honest and dishonest people out. Pain patients need this.
I have been treated by a pain specialist for over 8 years. I was asked to reduce my dosage of OxyContin prior to having a hip replaced. This was for my benefit. If I had went into surgery at the dosages I was on, the surgeon would have had a difficult time controlling my pain after surgery. This was one of the most painful surgeries I have ever had. Hip replacement made my two back surgeries seem like nothing.
Our pain will never go to Zero. My sisters and one of my daughters are nurses. My daughter works Trauma ICU and my little sister works on an Oncology floor. Oncology (cancer) they tell me is indescribably painful. My sister told me about an old doctor that was diagnosed with abdominal cancer. He had his hand in the “cookie jar” his entire career. A lifetime. They could not control his pain…at all.
I do not mind my doctor keeping my dosages as low as possible. I do get occasional intra articular injections in my natural hip, facet joints and vertebra.
If I keep my doses of narcotic dosages as low as possible, as long as I can, function on my job with pain level of 4-5 then I have had the best day possible and saving the heavy duty medication should I find myself in dire straights with cancer pain.

BL

Em Raven, you said that the cause of your pain has not been officially found. That is more than likely one of the problems. What medications did the pain management dr prescribe you ? Have you gotten a copy of your medical records and read them to see what your dr wrote about why he would no longer prescribe you tramadol or other pain medications ? Sometimes a dr writes things in the medical records that they don’t tell patients verbally.

Em Raven

It would do people like BL good to know that anything scheduled, yes including tramadol, is extremely frowned upon now and hard to get in many states, including mine, which is WI. I can’t even get it from my primary anymore (aside from otc it is all im on mind you) and got shuffled off to pain management after hearing for an hour about how I should be taken off it before my problem is fixed (or even officially found. Who knows what my degenerative scoliosis and loose joints alone have done and if it can be fixed.) Please speak for your own state/hospital/situation. All states and medical organizations vary and it usually by degrees of how bad they want you off the evil opiates and put on mind altering antidepressants, anti epileptics, and possibly in the future worse–anti psycnotics given off label.

BL

David Crawford, I’m not with an organization.

Christine Pohl, Tramadol can be called in and refills writtern on the paper prescription. Your dr can write up to three, 30 day prescriptions for a Schedule II at one office visit. Federal law states that Schedule II prescriptions can be sent electronically, if state law allow it and if the dr and the pharmacy both have approved software.

I am sorry the CDC needs to put themselves in our shoes. They need to have some more compassion and empathy. Just because you have people who abuse the drug those in chronic pain should not suffer.

Sure over the counter drugs would maybe work if we took the whole bottle and even then I doubt it. I think the OTC drugs are a farce because I don’t know anyone that they work for.

I am lucky in some ways my neuro and my go will prescribe Tramadol or Vicodin. But I can’t just go get it from the pharmacy. I have to go to the doc pick up the prescription (which I don’t drive) hubby does or Mom. I think it is a stupid arrangement. I think those who are chronically ill already that doctors should just be able to call it in. Instead of the whole call the doctors office, go there to just get a prescription then take it to the pharmacy. Then wait in pain because all that small running around has made your body just hate you.

David Crawford

To BL , What organization are you with ?

Well. I have personally seen the start of my own fight for treatment. Treatment that saved my life and has given me the ability to function for 8years (after trying every medicine for pain, before opioid therapy). I fell down a flight of stairs and only two weeks later heard the term hyperalgesia mentioned. I don’t have that, but did need a temporary increase in meds.

I feel punished or at best, categorized now in a group of patients who might need different treatment. Anxiety and depression were mentioned. Sigh…

I think about my son and how I’m his only parent. I get sad because i know that pain treatment is allowing me to be here. Where did doctors’ hearts go?

Ever Cuyler

The treatments listed as additional options to opioid therapy are expensive. Most people are unable to pay for these treatments, in addition they admit to having no real evidence that a majority of them are effective. I have personally had over 50 of them and still suffer daily with pain. Most pain doctors don’t take insurances like Medicaid in my area. I’m on Medicare and have personally paid over 30k for these costly alternatives to care. I have done them all. Feel this forces people into care that even the CDC admits can have extremely high chances of even worse symptoms, or additional disabilities.
I myself suffered horrible effects from steroid injections. A doctor gave me to many and shut my adrenal glands down. Let’s not forget it is a non regulated drug that left thousands with infectious and organ failure a few short years ago.
The CDC claims doctors caused the current explosion rates of addiction in our country. No they want us to put our health care treatment options in those same hands. We don’t have enough pain management doctors in this country to treat the high numbers of patients.
I was very disappointed in reading the guidelines. I find them setting patients up or a system of abuse. I found the numbers of overdoses padded and untrue. I myself know people who died of methadone treatment and where listed in the same class as opioid overdoses. They had an agenda and never took the patients into account. There Is a heroin issue, because it’s being mixed with fentanyl. What they are not saying is drug kingpins are making it. More often then not it’s not pharmaceutical grade.
They are forcing people who would never consider buying street drugs to do just that. Lastly the number of chronic pain deaths due to lack of pain management is on the rise. I fear we have just seen the very start of that. People need to encourage the ACLU to take up our cause. I feel like I’m living in a nightmare. Torture in America through extreme pain seems to have just been passed.

TIm Mason

http://www.biomedcentral.com/1741-7015/8/8
“Access to pain treatment as a human right” by Diederik Lohman, Rebecca Schleifer, Joseph J Amon (open access. unrestricted use permitted)
Copy and past link into browser.
excerpt: “The World Heath Organization recognizes the absolute necessity of opioid analgesics” Human rights watch.
A must read.

Richard Oberg M.D.

Jean – good question and it’s not rocket science. When the CDC deliberately puts misleading (ie: lying) on their website and then news outlets, etc. repeatedly quote them over and over without taking any time to basically READ what category the numbers are fumbled into to create the illusion that the sky is falling….. suggests no one’s home to care. After reading more about Frieden (CDC chief), Kolodny (addiction psychologist who is the executive director of PROP nonsense), and the rather obvious conflict of interest (they’re pals) that has given incredible power to create public policy around dubious assumptions and worse – what else needs to be said? Governors notorious for not having to take any IQ test for governing (nor other elected officials) like Shumlin of Vermont who said long acting hydrocodone is like oxycontin on steroids (refuted and imbecilic) are getting loud media voices. Seems he just noticed it’s a crisis… CRISIS in their state he’s only been governor since 2010 and took him until 1/2014 to announce it’s a CRISIS!!! Guess what? Their crisis is heroin which must be routinely given out by their pain management docs – or maybe he’s a little loud and screwy about what’s going on. And all this time I though our state of TN was the second highest per capita drug state but now everyone is – except you better look closely to see what anyone is talking about because it’s all deliberately misleading. Every state is raising it’s hand to get Obama’s addiction money and pain management is addiction management now – sorry you folks who have legitimate problems and have always followed the rules and these drugs helped – you don’t count anymore. Better to become an addict and everyone will sympathize with you since they’re going to be well funded. Funny how that works. Or maybe not.

Jean Price

How can they keep getting away with this lie they are perpetuating of the number of deaths daily from opioids…as if they are all prescription meds and all patient with pain who became addicted??? If that were true of people in pain who take opioids, don’t they think the doctors who treat them would have raised the alarm themselves? But it’s a lie…and for some reason, NO ONE with power is challenging this! I don’t understand at all. I believe the Pain Foundation should have given a blistering statement and then followed up with several patient comments!! Why didn’t they?? Speaking for ourselves hasn’t changed anything. We are seen as the addicts they are talking about, folks! Why would they listen to us?! As a day in River City, for sure!

Kristine (Krissy)

Tim: Look to Facebook for pages having to do with yourgmail. syndromes or diseases. There are tons, which act like forums, but are support groups. There are also those that report a lot of what the media is saying. Some groups are local — most are national or international.

BL

The National Pain Strategy Report is out and it seems to go hand in hand with the CDC Guidelines. Hopefully, no one thought that the National Pain Strategy would do anything to increase or protect chronic pain patients access to opioids.

“As the NIH press release said:

“Better pain care, achieved through implementation of the National Pain Strategy, is an essential element in the Secretary’s initiative to address the opioid epidemic. Access to care that appropriately assesses benefits and risks to people suffering from pain remains a priority that needs to be balanced with efforts to curb inappropriate opioid prescribing and use practices. The Strategy provides opportunities for reducing the need for and over-reliance on prescription opioid medications, including:
-Improving provider education on pain management practices and team-based care in which multiple treatment options are offered – moving away from an opioid-centric treatment paradigm.
-Improving patient self-management strategies, as well as patient access to quality, multidisciplinary care that does not depend solely on prescription medications, especially for vulnerable populations.
-Encouraging the evaluation of risks and benefits of current pain treatment regimens.
-Providing patients with educational tools to encourage safer use of prescription opioids.
-Conducting research to identify how best to provide the appropriate pain treatments to individual patients based on their unique medical conditions and preferences.””

National Pain Strategy-
http://iprcc.nih.gov/docs/HHSNational_Pain_Strategy.pdf

HAZZY

IVE TAKEN OTC’S FOR MANY YEARS AND IT DID NOT HELP, MY LIVER BECAME SHOT FROM OTC’S !!!! THE GOVERNMENT NEEDS TO GET THERE NOSES OUT OF THE DOCTORS BUSSINESS, MY LIVER HAS CAME BACK TO NORMAL LEVELS DUE TO NOT TAKING OTC’S, MY OPIOIDS HAVE HELP MY PAIN SO LEAVE US ALONE THAT ARE TAKING THERE MEDS AS PRESCRIBED !!!!

TIm Mason

Hi Krissy,
I was curious if there was a forum common to all who post here. I am a member of Spine-Health and some others.

Tim Mason
Kristine (Krissy)

Tim, that link is not found. Can you have it put in again. I read that article and want to bookmark it and would like to see others read it also. Thanks.

Jolee

Another very sad day for patients in pain. My pain started slowly. I did it all, chiropractic, massage, over the counter, tens units, injections, surgery. And exercise! I was an hour on the elliptical person. I toured Europe just two years ago. The very idea we go to the doctor for drugs the first visit is insulting. Now I live with Fibromyalgia, spinal stenosis and arthritis. I started on advils, I ate ten a day for years. Now even vicodian doesn’t work. I’m on percocet and oxi. I know people who died of overdoses… 3 in my own family. Don’t you think I know people overdose? In those cases there were circumstances. Tell us what they were. A number means nothing,. I’m in a great deal of stress over this recommendation. My doctors is going to retire. Big Pharma is behind this, no money in pain pills all gone generic. The drugs my rheumatologist wants me to take has warnings like sudden death.

BL

Jean Price, I apologize. The resource info is just FYI. I think that the more info we read and if we can see it stated in different ways, it is an advantage to us. I also think that some drs might be posting some of this in their offices in the future.

Dan Carpenter, try just walking for 5 minutes for a few days, then increase it to 7 minutes, then 10 minutes, etc. That way, you won’t overdo and not be able to do it again the next day or the day after. The mistake a lot people make is trying to do 20-30 minutes of walking to begin with. When you haven’t been able to get around well, just walking 20 minutes will exhaust you and you won’t do it again. If you build up very slowly and you do it consistently, you won’t get exhausted and your pain won’t go through the roof. It is hard to not do it for 20-30 minutes at least the first day. We have to remember that the regular instructions for exercising that say to do it for 30-45 minutes three times a week is aimed for people that are able to get around. They are usually working or taking care of their children and home. They don’t suffer from the health problems that those with chronic pain do. Anything that we do that we think of as exercise, we expect to see results quickly and we push ourselves in the beginning to see some resuts and that usually leads to us not doing it again or not doing it consistently. Always check with your drs first to be sure that your heart is ok to do any type of activity. You also have to wetch what you eat. It does not good to try and be active if you’re going to eat a bag of potato chips and dip on the weekends. We can eat the foods we love, we just have to remember everything in moderation. A few potato chips and a little dip once every week or two is ok, if we stop there and don’t finish the bag.

Samantha Kuehler, our weight has a direct impact on our pain. If we are overweight, our joints, muscles, nerves, bones, etc are put through much more than if we aren’t. If we are overweight, in makes our pain worse. Some drs don’t say anything about it and some do.

Jean Price

BL…I’m confused. Is your CDC reference material just FYI, or to support your weight loss and walking therapy recommendations? Just wondering.

Right on! I would LOVE to walk! I took a 3 block walk last month and was laid up in pain for 3 days. So I tried a very mild workout with my Wii game… Like golf. Laid up 3 more days. Exercise for pain patients is often a fond memory, or a hopeful dream.

Samantha Kuehler

i have nerve damage to my right sciatic nerve … this is permanent. nerves do not regenerate. once damaged, the damage is there forever. OTC pain meds DO NOT touch my pain. they don’t even come halfway close to controlling the pain i feel when this damaged nerve begins to act up. one and only one thing can control the pain i experience, prescribed pain meds.

i don’t LIKE to take them. i actually really hate it because i cannot function on the meds … but i have days where i must choose to either do without the meds and live in indescribable pain … or … to sleep the entire day away because of the meds. i do wish there was a third option, but right now, there’s not.

and the idea that my weight has ANYTHING to do with how my body processes the meds is totally wrong. the dose i am prescribed is 50mg of Tramadol as often as every 4 hours. i don’t even take half that much because if i did, i would NEVER be awake. no, i am not joking or exaggerating. my pills are cut in half and i take MAYBE half a pill 4 times a day on a REALLY bad day. so, the idea that a heavier person needs MORE meds to maintain pain control is entirely false.

my pain is real. it is not in my head. i am not imagining it. it actually exists. i defy anyone who has never had nerve damage to tell me different. you cannot tell me what i feel if you have NO idea what it feels like to have electric fire shoot down your leg from your hip to your toes or to feel like you’re being stabbed (a sharp piercing kind of pain) in the hip, leg or knee constantly, non-stop. if you don’t know what that feels like, keep your mouth shut about what you THINK will resolve my pain because you have less than no clue.

Tim Mason

Everyone,
On March 4th, 2016 Maia Szalavits, a journalist and author wrote an article in the Washington Post: “Five myths about Heroin” She has done a lot of research and discusses the CDC and their targeting of doctors with these guidelines.
It is a short article and a must read for chronic pain patients like us. The CDC would have been wise to listen to her facts about who, how many, and why people get addicted.
The states precisely what Melanie, Patricia and others know to be true.
Addicts mainly come from teenagers that ruin their brains at an early age. The risk factor for Opioid abuse is youth. Nothing else. And only 0.1 percent of chronic pain patients are truly addicts. The CDC would do well to read this. http://www.washingtonpost.com/opinions/five-myths-about-heroin/2016/03/04. The CDC obviously does not know what gnawing, deep aching and unrelenting pain feels like.

I am sorry if this quote is out of context as I don’t know how to reply to a prior post. Perhaps the monitor can place this post more appropriately. Recently someone mentioned that subsidies for health care premiums are taxable. I spoke with my agent who forwarded a Bloomberg article explaining that it was normally not taxable.

Here is the article: http://www.bloomberg.com/news/articles/2013-10-10/tax-realities-for-self-employed-who-get-obamacare-subsidies

Jean Price

BL…I’m not at all sure this is correct and may not be helpful for some who will feel judged. Some very thin people have pain, and some heavy people do not. Although weight can put more stress on knees and backs, many people don’t have the choice of an injury or problem happening when they are at a good weight. And taking weight off with pain can be really hard. As far as the walking…when each step hurts, when each small swing of your arm or joint movement in your feet is protesting…even when you’re showering or walking from room to room…how can you say anyone can walk every day? Walking around the house is very different than walking purposefully. It’s more likely to replicate repetitive motion and can bring more pain than walking the same distance in brief times around the house. What works for some doesn’t work for everyone, and although some people get a benefit from walking, to some it is pure torture. I think the weight issue and the walking is best left up to the individual. People know what they’re up against and they know if extra pounds or not walking might compound their issue…but they also know their limits to affect this.

BL

Patti, when weight is kept down and controlled so is pain. That means less pain meds. Some pain management drs won’t prescribe pain meds unless you keep your weight under control. Patients have to do their part. The days of just popping a pain pill and that is all we have to do is what got us in the situation we are in now. One of the goals is to keep the pain meds at the lowest possible dose. There are a lot of people that think they need opiates every time that they hurt. That is not the same thing as chronic severe pain. When a pain dr treats a chronic pain patient, they take into account physical reasons that may limit a patients ability to exercise. There is a difference in exercise/walking being difficult and a patient not being able to do it for physical reasons. Unless you’re confined to a wheelchair, you can start out walking 5 minutes for a few days and then increase it to 10 mininutes for a few days, then 15 minutes, etc. Exercise/walking not only helps with pain management, it also helps with other things like heart rate, sleep, appetite control, etc.

Kristine (Krissy)

I wrote this comment after an article showing families of fallen victims to addiction celebrating the CDC’s guidelines: “We all recognize that this legislation will not bring your loved ones back,” Attorney General Maura Healey said. “But I want you to know — and hope you find some measure of comfort knowing — that today there is legislation that is going to change the course for other families, for other individuals in the state.” Well, there is a big problem here. And I speak with all due respect for the families of those who have lost people to overdoses or mistakes. I ask you, will you come to the funerals of the people who die from the horrendous rising suicide rate by the community of millions who suffer in chronic pain everyday, as you celebrate in pride to change the laws that affect us? You may have just presented a milestone in your community while creating a disaster for another. I represent the people in chronic pain with many, many incurable diseases whose only relief is from opioids. And let me tell you why. For example, I have lived in pain for some 30 years, which started as a low-pain problem. So I was able to take aspirin, naproxen (the then Rx for what is now products like Aleve), low-dose Ibuprofen, gold pills, professional PT exercise therapy. chiropractic manipulation and beating the heck out of my body with exercise until I couldn’t walk because that was supposed to help. But my body kept breaking down and worsening — degenerative, progressive diseases with orthostatic intolerance. Finally I had to start taking some Vicodin (added to the regimen of OTC pills and supplements). It helped for a long time, which completely changed my way of living as I became a happier, more active person. But my body wore on and broke down more so that I landed on Percocet. I was very concerned that with (generic) Tylenol in those pills I was hurting my liver, and my liver tests were coming up abnormal. I asked the doctor to start giving my oxycodone so that I could eliminate the OTC Tylenol that was hurting my liver. Mind you, it was the FDA approved OTC product hurting my liver, not the oxycodone. I now take oxycodone with a Fentanyl patch and 800 mg of Rx Ibuprofen to control what is complete debilitating pain without it. There is no prognosis for me to get better, but only worse. My family members are very glad that my pain is (somewhat) under control, even though I have increasing mobility issues and my condition worsens and will continue to do so. Would you have me live in excruciating pain (that I wouldn’t be able to stand) because one of your loved ones died from an overdose or another issue with narcotics? Do you see a correlation between me (and the millions I speak for) and your situation? Do you even know that I take every single medication with… Read more »

Liz

I just called the CDC info line and filed a complaint, saying that they did not take actual pain patients into account with their guidelines.