Open Letter to Senator McCaskill From A Chronic Pain Patient

Open Letter to Senator McCaskill From A Chronic Pain Patient

By Terri Longtin.

Missouri Senator Claire McCaskill released a report this month alleging that from 2012 to 2017, leading manufacturers of opioids gave $9 million to pain treatment advocacy groups. At the end of our story on it, we asked readers what they would tell Senator McCaskill. We received many thoughtful responses, but this one from Terry Longtin, who lives just outside Detroit resonated.

Dear Senator McCaskill,

I have had chronic, widespread pain for over ten years. I saw every kind of doctor imaginable, looking for answers as to why I feel so horrible 24 hours per day. I had never requested any kind of pain medication because I never wanted to take any pills, I was anti-medication you might say.

Finally, it was suggested by my rheumatologist to see a pain management doctor, he also told me that more than likely I have an autoimmune disorder called CRPS, complex regional pain syndrome brought on by 18 major surgeries on my legs, a twice broken back, numerous broken arms, hands, fingers, toes, dislocations of the shoulder (multiple), dislocated elbow, lots of strained and sprained joints, a quad tendon rupture, broken ribs.

Terri Longtin

I also have degenerative disc disease, I have Raynaud’s disease, I have Morton’s neuromas, trigger fingers, tendinitis in my arm, and osteoarthritis in 90 % of my joints. I take Nifedipine for the Raynaud’s, which eliminated all of the symptoms, I take Symbyox and Wellbutrin for depression and anxiety, which works great, I take Ritalin for ADHD, which works well, I take Flomax at night for an enlarged prostate, I also take Lunesta (sleep aid), at night because pain keeps me awake.

My pain management doctor tried 4 separate back procedures which did nothing. Over a period of 10 years he prescribed many different types and quantities of pain medication, approximately 5 years ago my pain medication prescribed was five 15mg of oxycodone immediate release and three 40mg oxycontin extended release, so with all of the doctors and psychiatrists, they finally got all aspects of my life very successfully managed. My moods were good and consistent, no extreme highs or lows, my widespread body pain was mostly kept at a level of 4 on a scale from 1 to ten, which was great, I finally was a high functioning, happy person for the first time in my life.

Now with all of the incorrect, skewed, one sided, paranoid statistics out there regarding the “so called” opioid epidemic, my pain management doctor has been lowering my pain medication every time I see him. He claims that the DEA is forcing him to lower everyone’s meds. So now I am not a high functioning, happy person. I feel pretty horrible 24 hours per day. It’s an absolute crime what’s going on in the chronic pain world and many, many people are really suffering needlessly. There is so much REAL information available if someone were to take the time to look. I belong to a forum called The National Pain Report and they are the greatest advocates out there, but it’s not even close to being helpful for chronic pain patients. We need support from senators and congressman, but somebody is going to go out on a limb and investigate the REAL statistics and the true story as to what is really happening. My pain management doctor told me there is only one exception to prescribing opioids for pain, and that is cancer.

Here’s the funny thing, there’s a chart that doctors use for rating pain called the McGill Pain index, the condition in the number one spot on the index, above cancer is CRPS, which, amongst all of my other miseries, is the condition I have been diagnosed with, there’s NO pain worse than this condition, even knowing and acknowledging my condition(s), he refuses to treat me in a manner that is apropos and my life is just squashed and there’s nothing I can do about it. Here’s a statistic for you, LESS than 1% of ALL opioid overdoses are from people with legitimate prescriptions for pain. I have a right to receive medical treatment for my condition(s), my rights as a citizen are being trampled. So please, be our voice, our advocate, take the time and investigate it yourself, you’ll see what I say is 100% truthful. Thank you for your time and please help us before suicide rates for chronic pain patients go through the roof.

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Authored by: Terri Longtin

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Ann

I live in MD and my caring, highly regarded, and highly educated pain management physician had his office raided by the DEA and FBI, confiscating all patient charts and anything else they could take. However, they left his license to write prescriptions intact, and he attempted to treat his patients who stood beside him, believing in his innocence. Then, 3 weeks later the DEA showed up unannounced, demanding him to hand in his license as well as all the PA ‘s working under his authority, thereby leaving 2,000 patients without medication, some who ran out of medication that day and nowhere to turn. When patients asked the DEA agents what they should do, knowing within a short period of time that the pangs of withdrawal were surely going to start and only get worse, the DEA answered:. “go to the ER” or “call your family doctor”! If the DEA and other beauracrats are so concerned about loss of life from opiates, why did they send 2,000 patients to the Lions, knowing (or should have known) that going cold turkey off of drugs such as Fentanyl Patches and Morphine ( just to name a few) could surely lead to death. We were also given the phone number of the Dept. Of Social Services but what we needed was time. Time to plan our
next step, whether it be finding a new pain management doctor; time for our doctor to write prescriptions while we attempted to find a new doctor, or time to enter a rehab facility or at least time to get psychiatric counseling if anyone was suicidal. At least our doctor could tell us what was happening, write prescriptions to keep our pain at bay while trying to navigate through the streets in MD., while trying to find the new doctor, and at least give us enough time to get to a hospital ER before starting withdrawal. Our clinic was run that our medications ran out on the day of our next appointment. We were given no extra in case of emergency. Most patients had to fill their prescriptions on the way home.

Why is chronic unrelenting pain, diagnosed many times by 2-3 doctor’s, at which time you are referred to a Pain Specialist, who begins treatment, and eventually finds the medications that agree with you, any different than other chronic diagnoses, such as diabetes, heart disease, emphysema, etc. Once pain gets to the point of being uncontrolled and the person not able to have any form of normal lifestyle, many people have lost spouses, friends, jobs, and very importantly, their will to live in their current degree of pain.

Alice

Warning: you might do well to start weaning off your dose even if its already been cut to half. To avoid going cold turkey when feds start closing clinics right and left beginning July 1. I’ve been told this by my own doctor.

Alice

Whatever you send out comes back to you times three. So we know the ppl behind this barbaric push to deny sick ppl the medication they require will soon fall ill to the same condition. They, or someone very close to them. Times three? That’s rough. I will feel for them, although they don’t give one rats behind about me.

Terri Longtin, thank you for relating your pain journey and the dilemmas imposed on your doctors by misdirected public policy on opioids. You have a :LOT of company.

One favor if I may ask: what was the source of the 1% figure that you quote concerning patients prescribed opioids, versus addicts who overdose? As a writer and patient advocate, I need to use the most accurate data I can find when I publish on your behalf and that of others in pain communities.

Kelley

Can we start tweeting on the president pages?

Larry Feldman

The major problem in asking for a reasoned appeal to Sen McCaskill is that, while she impugns chronic pain advocacy groups as being on the hook to Big Pharma, she has accepted $300,000 from one of the major law firms suing Purdue over the ‘opiod crisis’.

Diane Sullivan

i’m a chronic pain patient that never abused, one pharmacy one doctor didn’t even know what was going on. I have a 17-year-old daughter I’m 59 years old. Arm can’t be fixed head of trauma unit at CPMC for surgeries over 20 years now on broken , Nerves entangled in operable. No one will help me. I have a 17-year-old. Suicide is going to go out because the pain medicines I’m down to three and then you can’t get up anymore to even try to get anything illegal there’s nothing left to. How can this happen in America ? Why are you punishing not that it matters but I have my own insurance that I pay for my prescriptions my pharmacy knows me for 15 years I just need a prescription. Cliff to the people that are using it why don’t we have that died because of them why?

Kim

It’s so meaningful to read all your posts. We r all suffering from the CDC guidelines & people’s ignorance of using pain meds responsibly. We can’t give up! One person started the campaign for these regulations & more people joined in. Being so sick myself , I understand it’s not easy to write or want to deal with this issue . I don’t go on Facebook or alot of other sites ,due to, not feeling well. But please, write government officials & others, I will. We have to help each other & stand as one!! We can win!! Any ideas of who we can all write I’m in, I’m slow, but in. Lol. We must have faith.😁

Kelli Davidson

Doctors should be able to make the decision on a case by case basis..
I would gladly submit information needed to help the the doctor be able to justify my need…I have the Medical documents to back my need up…

Kelli Davidson

Absolutely! It is wrong what is happening to “We the People”….yes we belong to this same referenced group…we are entitled to “pursue happiness”…WE CAN’T when we are denied medicine we need!

Why do you hear constantly that 80% of heroin users start with Rx meds,but then you read the N.I.D.A. reports and they say less than 4% of ppl who abuse Rx meds go onto heroin use within 5 yrs.I DONT GET IT!

Lisa Hess

I don’t know how to “tweet” on Twitter, but it seems that the President of the United States hasn’t a clue of what real life like to be a real US citizen who’s constitutional rights are taken away everyday! He only knows what he wants to think he knows and then tweets about it. Can someone Tweet him and point him in our direction to the National Pain Society, The National Pain Report, the ATIP group and any other group dealing with our daily lives and maybe he’ll look at one of them. We are citizens of the “Land of the Free” yet, he and his government are putting our lives and our own prisons within our own bodies. He needs a swift kick in the ass, but it looks like he prefers Twitter over everything else, so those who can “Tweet”, send him to this site and all our articles, comments and complaints. Maybe he’ll learn something by listening to the people who know, understand and live with Chronic Pain instead of listening to a bunch of government officials who haven’t got medical degrees and have no idea what life is like in the real world of those who need our medications so we can live a life of freedom for which our US Constitution was originally built upon. Our rights are being stripped which is totally against the rights for those dealing with the Americans with Disabilities Act and it has to stop! I’ve been in bed for 2 months now because my intractable pain has gotten worse to the point that I wake up everyday with pain levels between 8-10 and the amount of medication I am on, no longer helps when my pain level is that high. I can’t walk without help, climb stairs without help, sometimes get in and out of bed without help and most embarrassing is needing help getting clean and off the toilet. The DEA, CDC and all other’s fighting against us, should try living one day like we do and their tunes will change very quickly. Of course, that’s just a pipe dream of mine. Most sincerely!

Joy

I agree. Congress and the Oval office both need to reach out and learn and understand what Chronic Pain Is, Does, and how the right medication affects it and what quality of life truly means.

Alice

I’ve done a lot of reading the past few days. I have a few things to add. One, I read this:
The DEA took legal action against 88 doctors in 2011 and 479 in 2016. Two, I read that the CDC group that is putting these guidelines into effect aren’t even sure that Opioids help ppl W chronic pain!! Did you hear that? This is madness. My opinion on one reason they may have come to that conclusion is this: patients who say they have a 6 or 7 or 8 or even 10! Pain level when they have their doctor visit. The doctor I’m with now took over my previous doctor of fifteen years practice. He dismissed everyone who stated their pain level was above 5. I know bc a lady I worked with who went to same clinic got a letter dismissing her, after first visit W this new doctor, bc she had claimed a pain level of 6. So they’re deciding if pain is like this with Opioid meds that it’s not helping. Just my guess. It’s going to go from bad to worse before it’s over I’m afraid.

Jeannah

Who will be tracking the number of suicides or number of people who have to stop working and being productive members of society because of this misguided war on human beings in chronic pain? Will we see stories on nightly news of these statistics? Thanks to the brave folks who tell their stories here daily and to the National Pain Reports efforts in advocacy for us!

Rocky

Wonderful and succinct article. Well written and lays out very clear the author’s pain. Such a sad commentary on how our government has lost all caring and compassion for the less fortunate.

After all we have become a large group of Americans who no longer contribute to our government. We have become expendable, we cost too much to treat adequately. The government does not understand we will now be costing them eve more now because of this very misguided war. So very sad.

I don’t know how long we have to wait for some GOOD news for pain sufferers. Year after year now, it’s been only BAD news. This horrible nightmare we are all hearing about and living through must surely hit critical mass…..things have GOT to swing back the other way. I write letters, make calls, post stuff…it’s been years now, that we have been abused by everyone. This has to get better.

Heather Vantress

National Don’t Punish Pain Rally is April 7th in Evety State at 12pm EST, I know that’s a hard time frame for those of us on the East Side. But we got to show numbers. News coverage and senators and congressman will be there too.

There is a exclusion that needs to be added to the CDC guidelines and that’s intractable pain:
Intractable pain is severe unbearable 24/7 pain that causes one to have greatly reduced activity level or are bed ridden.

These are the cases that are getting abandoned by thier Dr.

We’re the Chronicly ill

Please stand with us

@Dont Punish Pain Rally in Facebook

Alice

Omg!!! How can this be happening? My thoughts are so scattered right now from reading all these horror stories. I had the world by the tail until one evening in 1995 I leaned over to turn TV off and I went down. Long story short three surgeries later I was actually in more pain than I started with. It was a nightmare for four years, when I finally got in with a caring doctor who experimented until the right meds made it possible for me to work another 15 years for my same company. I can’t walk without pain meds now. Severe neuropathy in right leg as well as severe back pain. I’m carrying a metal rid and screws for the rest of my life. Which won’t be for much longer. I have no choice but to commit suicide. Meds are half now and Im not handling it well. Doctors are closing all around. It will be like prohibition. They’ll realize it was a mistake and ease off the pain patients in ten years. But oh the tragedies that will be left in its wake.

Scott Dickeson

You nailed the problem perfectly! I’m in the exact same boat and have written my senators and not a word of reply. I sent a letter to McCain on a topic I know he supports and a received a response letter two weeks later. They won’t touch the issue we suffer from so quit wasting your time. Time is better spent getting these senators thrown out and find someone else that supports us!

jill slovacek

I agree, we need to stand up.. opps, bad example for some maybe,,, we need to do whatever we can! Raise our voices! Make appointments with our family,friends,caregivers and go and see OUR elected officials. Go to the local offices and sit down eye to eye. One after another. I know it is a hardship. I do not drive any longer, but it CAN be done!

Kim

Thanks 4 sharing u r story. I also wrote 2 government officials. My MD also is cutting back on my pain meds due to the pressure of the CDC. My MD basically said, if it comes down to me suffering in bed all day or him having 2 take the time 2 fight with the CDC regarding prescribing pain meds, I will b suffering. People said, I was wasting my time writing 2 government officials. But I disagree ,if we all ban together & find advocates 2 help us we can change things. If we complain & don’t write or reach out to people who can change things , nothing will ever b done. Thanks, I hope u r story will inspire others to speak out.

Dearest Terry,
Thank you is such a small word for such a large act of kindness on behalf of all of us. I have to wonder if all of those who are involved in this injustice they’ve created, read every single story from the National Pain Report would change their hearts or their minds. Of course it would take more than a week, it would take years to read all of our stories. I feel if they did such it would most certainly change things as well as put things in perspective for them from our point of view, not a drug addicts. Nevertheless thank you so much again! May God bless you always.
With many prayers and lots of faith for yourself as well as the rest of us.

SHIRLEY Davis

I too am a chronic pain individual who attends a pain clinic and has been reduced to one half of my meds. I expect to be in a wheel chair not long from now without proper meds. After two back surgeries, I was left with peripheral neuropathy in both legs. I cry with pain everyday. I have tried everything the Mayo Clinic in Jacksonville, Fl. suggested. I even had the spinal stimulator implant to keep from taking opioids, but it made my pain worse. I agree that animals now have better treatment than humans .Please Senator McCaskill take this to the proper channels.

Alice Carroll

Amen, Terry. Thanks for the excellent piece.

SALLY BLESSING

I thank Terri for his research and for writing. I wish there was some magic person to write to that could help us fellow pain sufferers. I have been a pain management patient for 13 years I have tried every pain medication possible and the only one that gave me any kind of relief not 100% but at least 60% relief was Fentanyl, I was started on it 10 years ago and as my tolerance grew and my pain worsened after more surgery and more surgery my pain management doctor of 12 Years kept increasing my fentanyl pain patches.

On February 6th of 2018 I go into his office and he tells me it is law now, unfortunately I have to decrease your medication by 3/4 and also we have to increase the duration in which your patches have to last I know you have always warn them for 48 hours but the government now says they have to be every 72 hours, my doctor said it’s nothing personal this is across the board it doesn’t matter how long you’ve been on your medication or your weight or your tolerance or your pain everybody is being cut down drastically and I am very sorry.

In tears, I looked at him and said well I guess I have no choice my pain has gotten worse over the last 4 months but you have to do what you have to do so now what happens to me????
After being on the same dose of fentanyl for 2 years now every 48 hours you’re now drastically dropping my dosage and duration of the patches by 3/4 so not only do I have the severe pain but now I have to go through withdrawal because some bureaucrat in Washington says that I’m not worth being taken care of.

Animals are treated more humanely then a lot of pain management patients of today and it is wrong when I was on fentanyl, I was in bed about 70% of the time but I was still able to get out and go to the doctor’s office or go to the grocery store but now thanks to the new regulations I am bedridden in my hospital bed 24/7 365 it is excruciating just to get up and go to the bathroom and to make matters worse since I am not completely off Fentanyl I will be taken completely off of it within the next two weeks. Is my doctor trying to kill me or what? To go from 175 micrograms every 48 hours to zero micrograms in 3 weeks time is inhumane I am being treated worse then an animal whose being beaten.

I never asked to be on these medications I went through three surgeries to have a neurostimulator implant it which all backfired. They made things worse. PLEASE HELP ME/US…

HAZZY

IM WITH YOU TERRY, IM IN CONSTANT PAIN 24X7 AND MY PAIN MEDS HAVE BEEN CUT, IM 65, IM NOT GOING TO OVERDOSE. I WANT TO LIVE PAINLESS

Hayden

It is very obvious that Terri has pain generating conditions. I fully understand being able to be active after disabling, continuous painful personal issues developed. I got 23 years of enabled activity through adequate, appropriate pain management before about a year ago. At 59 years old now, I am finished in the world of self providing, self preservation. I was in fact…..granted a monthly check without having to earn it any longer but, the pain is worsened and continuous. It is a shame that we have to educate our lawmakers to introduce legisaltion, to be voted on by goups of peers and constituites that will stop the worsned pain for so many people. People that have well recorded information of the positive outcome of opioid medication use that was simply not taken into account before the sanctioning of everyones medication. Even with so very few patients that benefit from opioid medication use actually becoming addicted or graduating to an illicit drug such as heroin or any other substance can kill with one use.. WE simply need opioid medication to manage pain,that we never asked for, in a tailored amountl dispensed after the absolute need is verified through a system of medical professionalism. Medication that achieves a tolerable level of pain management that we never asked for. Some…regulation needs to be imposed of course to possibly stop those that would possibly make a business of opioid medication but, that wasalready being done while and ongoing before ant “opioid crisis” was declared. Our doctors, abosolutely handicappped now, to treat a stated by a Senator fromm my state that the number of patients number in the millions need medically neccessary treatment for continuous pain. The gate for worsened accident with opioid substances and not prescribed medication has been opened worse but, again our health regulatory agences, in our case the pain management with opioid medication regulation and “policy” is not accomplishing anything that new policy is supposed to curtail or prevent. Life is not good for the lifetime, continuous pain, management of patients for now. How ;ong does it take to realize a mistake?

Debbie

You’ve just told the story of millions of severe chronic pain citizens of the USA, including myself. As you stated, we are suffering NEEDLESSLY! Somewhere in this “opioid epidemic” narrative, we were completely forgotten. We…the chronic pain/illness patients…who carefully time our doses and use our medication responsibly. All we want is to be able to go about our lives with a tolerable level of pain. Having medication to assist us with that makes the difference between LIVING A LIFE, or staying in bed every day. When the suicide rate of pain patients denied care skyrockets, the blood will be on the government’s hands! My prayers are with you all.

David W Cole

Terry, Thank you
There are so many of us out here with similar stories to yours, I really hope she decides to read your letter. We all need to continue to right our Representatives, go on social media and fight back. I believe the Congressional meetings are over and we actually had pain management specialist another Advocates at those meetings. We should know within the next couple of months if Congress is going to do anything about this attack on Dr’s and their patients. Looks like our biggest fight is with the DEA and some State Licensing boards, as they’re the ones that’s putting the fear of being prosecuted in to Dr’s.

JaneF

What a well thought through responsive letter. I also suffer from CRPS, which affects a lot more bodily functions than just extreme pain, such as cold extremities, blood pressure, sleep, hot flashes, bodily jerking, depression and enjoying what so many people take for granted. I told my husband that after watching the show, “Addictions”, which tells the story of “weak-minded addicts that make bad decisions”, THEY are responsible for why true pain patients are having our lives taken away from us. We are not the problem, we just want a normal life.

Dave

I bet the senator and other well off people in society and their family members have no issues receiving proper pain treatment with opioid pain medications. Hit them where it hurts. At the polls.

nana

Dear Terry,

Very well worded. Thank you for taking the time to write this. I am sorry for your pain.

Senator, maybe we should just move the animal rights standards to the human standards. I maintain that animals are treated more humanely, more kindly than humans. Do you have any kind of acceptable answer as to why, in this day and age, that is the case?

Dee

Great story.I can tell Terri really did his homework on pain pills. I also think it is terrible that the people who suffer from real pain have to suffer. I also have have a very painful disease called Oral Linear IgA. It is attacking the moucous membrambes in my mouth and throat. I am in pain all the time and sometimes when I try to eat I just sit there and cry in pain. It really is not far for the people who have very real pain to have to suffer.

Fred Brown

Thank you, and again thanks for your openness, honesty, and letting someone who has the influence, and power to open the discussion.
It takes one person in Washington to help stop the madness, and insanity of what is going on in the world of pain management here in 2018.
A twenty year severe pain patient.
Fred Brown

Audrey L Liebl

Awesome! Sharing. 😊

Susan KOZUB

What he has far surpasses the pain that I feel everyday and I feel really bad for him. I’m on 3 oxy’s a day 10 mg and my pain doctor said he’s going to be taking me down to this summer and I have rheumatoid arthritis and herniated discs and on sciatica and I can’t even imagine. It’s the only thing that helps me go to work. someone needs to do something.