News report on pain patients being denied medicines.

One of my local channels aired a story of legitimate chronic pain patients, like many of us here, who are having difficulty getting prescribed opioids and getting the prescriptions filled.

https://www.wtae.com/article/investigation-chronic-pain-patients-denied-life-saving-medicine-because-of-opioid-crackdown/27377991

What interested me most was patients saying they have tried marijuana and it didn't help them.

I can't get past being upset with my pain doc telling me I need to get off all my pain meds and then he'll give me a marijuana card.

Thanks for putting this on Alcie. I surely know what they are talking about also, as do many of the patients on this site.
The same unfairness is going on in our country although ours is to a lesser extent by the gov. It's mainly the people who get the drugs off the streets which are laced with other garbage which is causing over-doses or death. It's not fair to the people who have chronic diseases that cause unbearable pain but use their meds responsibly. As the people mentioned, the alternatives do not work for everyone, same as pharma meds.

Susie, we on the forum know this has been going on a long time. This is the first news station report I have seen showing to the public how bad it is for real pain patients now. I hope to hear from others that newspapers, magazines radio stations and other TV stations are reporting our side of the story, and that legislators and government officials will take us into account when they make and enforce laws.

msOuchie, You have it right. It's the illegal drugs that are one problem and the difference between what works for each person is not the same. I stopped Oxycontin because it wasn't doing anything and didn't even have withdrawal.

Darla, I can't seem to get it across to my PM that I need to try more of what does work or try something different. I can't get a word in edgewise about trying more testing, like a new MRI or at least try another shot for my pinched nerve in my neck that is causing pain in my neck, shoulder, trapezius, bicep and down to fingers. He's out of the room in 3 minutes. He used to spend more time. Maybe it's the increasing patient load forced on him by the hospital he works for. Or maybe it's pressure the hospital or the officials are putting on docs to reduce opioid prescriptions. He insists that an article he read about a study in Israel about thousands of pain patients proves that MJ works well on neuropathic pain. Pinched nerves are considered neuropathic pain, but they sure aren't in the same category as diabetic nerve pain, IMO.

I'm scared silly to schedule knee and shoulder surgery my orthopod says I need for fear that my PM won't let me have an increase in pain meds. I'm also terrified my PM is planning to cut me off the 2 Norco he lets me have, which is only enough from keeping me from screaming.

I can't go help my son in Georgia if I take MJ. It's illegal to buy it there or bring it in from out of state. It's also illegal to take it on airlines - just in case anyone cares.

Alcie, the so called "opioid crisis" is not just about opioids. It's how it affects the economy across the country. This is what was simmering on the stove long before the CDC & FDA stepped in. They did study after study, surveys, graph charts galore. They had been collecting information for several years to include age groups, length of time on a pain medication short/long term, time missed from work to people becoming disabled, people on state assisted programs. The bottom line was that if the trend continued upward as it had been showing with the use of narcotics, in 20 years our economy would be so greatly affected based on their studies it would tank.

I think its great your station ran this story, at the same time there are many different pain networks with drs involved reaching out to the CDC. So far, the CDC has thumbed their nose at them. I will most likely not live long enough to see any positive changes, I think you & I are close in age. This entire mess is too politically motivated.

MM is not legal in my state & the sale of CBD oil is also illegal. However, it is being sold out in open & the police are not going after the stores selling it. For MM cost is a big factor for most people even if they get benefit from it. In Florida it costs I believe $250 for the application & another $250 for the card. Then the cost of it is not cheap, meaning unless you have money you can't afford it.

It is the illegally obtained drugs that has made a problem for legitimate people. Look at all of the Fentanyl OD's. This is not Fentanyl patches that patients obtain at the pharmacy. This is Fentanyl in its purest form, dealers do not use a scale to measure out enough to keep it from killing a person. It's laced with who knows what. These OD's are junkies, but because Fentanyl is found on the tox report its called an opioid OD. Nearly every day either a celebrity or politician knows someone that died from an OD, it's always front page news. It's called choices people make.

I don't believe there are that many studies in the US showing the benefits of it, I could be wrong. I will stop here & get off of my podium, discussion of politics is not allowed, lol.

I got my numbers from a lady in Florida. Her PM dr allows his patients to switch. I know it was $500 for her if she decided to go that route. The card fee was $250, it stated that on her application this amount, & now that I think about it, it may have been her PM dr charging the other $250. This was last year. She said it took several months for the app to get processed before she would receive her card. She opted to ditch the idea because of the cost involved every month. She would have been spending more money per month than what she spent monthly for her medication. On the other hand, her PM dr was not pushing his patients to go this route, it was an option.

Everything comes down to money & profit. We have some friends that vacationed in Colorado last summer. They went into a shop to snoop around, had never seen anything like that before. First words out of their mouths were, who in the world can afford this stuff. The edibles were just as pricey as the other. They laughed & said it was an experience for sure walking in one of those shops.

It is becoming a very real thing. I just met with my PM doc today regarding my care, and two doctors she knows that are good PM docs are either being forced out of the practice or their license is being threatened recently, because the patients they see are some of the most severe PM cases out there... so they prescribe higher.

I am on Nucynta which has been working great, and has given me my life back, but we are now going to try adding in Belbuca (sticks to the interior of your cheek and dissolves) and see if I can replace my Nucynta with that. This is a PM doctor who has gotten all her patients off of traditional opioids and onto the safer ones... and she is now scared to even give the Nucynta. She estimates that schedule II meds won't be available anymore in the near future.

I am not sure that will happen, but it is legitimately scary to think about. I am a normal functioning person and have finally been able to work fulltime and take care of my family due to how great Nucynta has worked... yet, this is where we are headed.....

I hope and pray Belbuca works well for me.... and it very well might because I don't absorb the Nucynta too well as it is (due to half my small bowel being gone). Half the time, it seems like the Nucynta doesn't kick in because it moves through too quickly or not quick enough.

Susie, I wonder how many doctors will put their patients back on opiates. Also how many will go back to prescribing high doses to patients they tapered. I do not think recent statements by the CDC and FDA will make much, if any difference. Sure hope I am wrong.

Susie, even if you got something in writing. That does not mean the doctor would have to abide by it.


Our age and the fields we worked in. make us more skeptical than others. We know things often do not go the way they should. Common sense is not that common.

Jeez, it sounds like this office is he!! bent on everyone being on MM. When a receptionist tells a patient how great it is, that's not a good sign. Obviously, she has no idea what chronic pain is all about either.

about your medications not working. I know you have issues with various medications, however, what you have access to may be working more than you think. I know you suffer quite a bit even with medication. The only way you will ever know this is if you taper off of them. I think I would get on the computer & start scouting out a new PM dr to try & get your pcp to make a referral ASAP. Let us know how the appt goes tomorrow.

I am sorry to read about the other situation. Sometimes we have to do what we have to do is how I look at things.

Alcie...You go on because people need you. That has to be enough sometimes. The pot thing is ridiculous. Comparing apples to oranges and I think the PM people know it but have too much pressure to make the choice they make. I do not see that that is in the patient's best interest many times. I think the PM people have given a collective shrug.

Just because the waiting room is crowded doesn't mean they won't give you time (sometimes)...They back up at times because they spend time. Bring something written regarding your conditions/symptoms etc. Edit it to one page and give them a copy. It helps focus the appt and provide the PM person with something they can use if they will stay with the meds.

I am thinking about you and looking for your post saying it went well.

My pain doc called yesterday and asked me to come in before the other patients. His receptionist had written down what I had told her and he was concerned that I might be suicidal or something. No, I COULDN'T do that! It's just too wrong to hurt others!

He didn't want to hear anything about personal problems, and I respect that. Maybe after I see him next month I'll let him recommend a psychiatrist. Somebody to talk to.

I handed him back the two prescriptions for Oxycontin which didn't do anything. He suggested a lot of alternative meds, but I refuse methadone, have to look up Nucynta before I agree to it. I need to know the metabolites because some of them simply don't work - anything that goes to morphine for example. He assured me he wouldn't just dump me. I've been so scared!

He referred me to a very good neurosurgeon for my radiculopathy - pain from C-3 down shoulder, arm, to hand. I don't want to just cover up pain if some treatment is possible.

He gave me a prescription for one more hydrocodone a day, which will allow me to take a whole one in the morning instead of biting it in half to make it last. Just in time for me since I found a tractor to borrow for a couple of days.

I would be willing to try medical marijuana if it didn't mean having to give up pain meds when I need them, no big deal. I never get high or anything nice. I'm just terrified of being abruptly cut off and suffering intolerable pain and not being able to reverse back to meds. I read a new letter from the post-polio people saying that cannabis may help with neuropathic pain from post-polio syndrome. But more study is needed.

M&G - Yes, checked that. My will gives him the legal minimum 30% of our joint estate and nothing from my inheritance from my mom, which I kept separate from household finances, so it all goes to my sons, not him or his daughter or girlfriend. That's in the paperwork for the account. He's got plenty he doesn't share, but doesn't realize it's half mine. He's lucky I keep saving his life when he has medical emergencies and let him stay in the house. Last year on our 50th wedding anniversary I found his girlfriend sitting on his hospital bed and nearly divorced him. But he's sick and I'm not that mean.

Susie - You have a good idea. I could easily stop the Norco altogether for a while when I am not so stressed. Then I would know how much it helps. It does help. I can tell exactly when it kicks in and that taking a half doesn't do nearly as much as a whole 7.5mg. I can stop after I get the 40k gallon pool open, go to the family reunion, get the water treatment plant backwashed and the sewage treatment system bacteria working properly, and it stops raining so I don't have to mow every week, and I get the plants that I am growing for others in the greenhouse gone, and the gardens weeded. I can stop one pill at a time each week. I really don't expect withdrawal problems, just pain.

Sorry about the long post.

Alcie, if at some point you decide to taper down, please wait until you have gotten yourself in a better place emotionally. The issue about MM the past several months has turned you inside out, understandably so. I guess I am just old school, my philosophy has always been if it ain't broke don't fix it. You understand that old saying I am sure. Extra stress is something none of us need, it makes such a negative impact on our lives.

You mentioned needing someone to talk to, I have a suggestion. Consider seeing a good psychologist, I did this in 2004. I hit an all time low for me, saw my pcp & he put me on an antidepressant with the agreement I would talk to someone. He gave me a lady's name & phone number & said a few of my female patients see her & like her. I was not very receptive at first, usually I could just deal with it, that was my attitude. It was maybe the 3rd visit before I could truly relax. She was a smart lady, I wasn't her first patient that had the skepticism, lol. I stayed with her almost 2 years & went weekly. I actually started looking forward to our visits. She was a tremendous amount of help. Myself, I don't think I could have talked with a man, nor could I have related to a psychiatrist either. If you are interested, your pcp could make a referral, instead of waiting on the pain mgt dr.

Anyway, just wanted to post this tidbit to you.

Alcie - Yes, you would for sure replace the tramadol with the nucynta. If you have seen online, they typically call tramadol "Baby Nucynta" as they are very similar medicines, only nucynta affects the serotonin a bit less and affects the opioid receptors more. They were both created by the same company, so it makes sense. I take Nucynta with Savella, another SSRI (and am on 50 MG of the Savella), for the neuropathic and intestinal pain. I am also on Lexapro for depression/anxiety, so quite a bit that could cause seratonin syndrome... and so far have been OK. The pharmacists are great with educating me about these things and how they interact, and never make me feel guilty about all these meds I take. LOVE Meijer pharmacy. Seriously the best pharmacists!

Dilaudid is a great medicine, for when things are obstructing. It takes away the pain...the only thing that will work. Until my intestine resolves the obstruction, that is the only thing that works. But then I try to get back to the Nucynta again.

Belbuca hasn't really caused much in terms of respiratory depression for me, just a little bit of dizziness, but I am also on a very low dose. It still isn't able to work on it's own but it is definitely helping. Though today I have needed the Nucynta every four hours.... having a rough one but a very active day (which doesn't help things).

Sending thoughts your way, Alcie! I really hope you give Nucynta a try... it really is a great med with half the side effects and full pain relief. In my mind, it shouldn't be a schedule II... it should be a III or lower, as there are barely any side effects. I can actually function on it, even if I need higher doses... could never do that with oxy or even dilaudid when I am in the hospital.