35-Year-Old Wife and Mother Describes Her “Addiction” to CDC

35-Year-Old Wife and Mother Describes Her “Addiction” to CDC

When the Centers for Disease Control and Prevention opened up a public comment period on its controversial Opioid Guidelines, urged our readers to comment and even gave some suggestions about HOW to comment.

We also asked that you share your comments and that we might publish some of them.

35-year-old Christiane Parsons of Clifton Heights, Pennsylvania is one of those and her comments are worthy of sharing.

“I can barely stand to have my children touch my left hand, arm, shoulder, and neck. I am a wife who cannot deal with the pain from my husband’s touch. You see I was diagnosed with CRPS/RSD in March of 2015, but I have been dealing with the enormous amount of pain, swelling so bad my skin wants to break open, and that feeling of bones being so cold that it burns from the inside out for much longer.

ADDICTION

My primary care doctor didn’t even know what CRPS/RSD was. Do you want to know what I am addicted to? I am addicted to the sound of my children laughing. I am addicted to doing whatever I can to make my life normal as it can be. I am addicted to making sure my husband and kids know that regardless of how much pain I am constantly in, that I love them with everything in me.

Yes, I am on pain killers but I am not addicted to them. In fact, the pain killers I am on barely work to help my pain. My pain keeps me up at night long after everyone else has gone to sleep if I sleep at all at least until exhaustion kicks in. People with CRPS / RSD experience more pain than anyone else according to the McGill Pain Scale. People with the same condition that I have commit suicide because at some point pain killers do little to help.

Yes, people that are addicted to pain killers need help, but they are NOT the majority of people who use pain medication. They are an important group of people without a doubt but they are no more important than those of us suffering from very serious medical conditions that cause enormous amount of pain. People who are addicted should not dictate my use of pain medication.

What amazes me is that people who haven’t the slightest idea about the kind of pain people suffer from have automatically determined that we are all abusing the pain killers. I and most others like me are not addicted to or are abusing the pain killers. We deserve to have our voices heard loud and clear by those pretending to care about us and our conditions.

What I am addicted to is something that not even the full strength of the US government can stop. And that is the love of my husband and children. It is their laughter that keeps me getting out of bed to fight another day. It is their refusal to let me lie down and die that keeps me getting up each morning and going on with life.

I have been an EMT for 15 years. I have treated drug addicts as my patients. Even most drug addicts don’t want to be addicts. They want to get and stay clean. They want for these medications to not take their lives over. Drug addicts as well deserve to be treated as humans who need help but taking medications off the market that have been proven effective will not solve the problem. True addicts will just find a replacement and that replacement could be even deadlier.

What then?”

Editor’s Note: CDC recently opened its Draft Guidelines for a second public comment after mounting criticism by advocacy groups, as we reported. If you wish to comment, and we hope you do, you must submit your comments no later than January 13, 2016. Here’s a link to the comment section.

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Authored by: Ed Coghlan

There are 17 comments for this article
  1. scott michaels at 10:00 am

    you are so right. the sad thing is, that the powers that be care more about the knuckleheads that decided ro abuse and use our live saving medicine for a high. I have yet to meet a chronic pain patient that is in pain RELIEVERS for years have any issues. We take our meds as directed because they are too important to us. they allow us to enjoy our loved one and have some type of productive life. We wish it got us loaded but it doesnt. CDC GET A CLUE. STOP PANDERING TO THE JUNKIES OF THE WORLD

  2. Geo Sims at 9:25 am

    Thank you for your comment. The link has been updated; however, the comment period closed on January 13, 2016.

  3. Carrie at 2:46 am

    The link only take you to a site where you can leave comments, but if you DON’T KNOW what TITLE the subject is given, it’s nearly impossible to find where to go to leave your comments.
    Could we PLEASE GET INFO ON WHERE TO GO TO COMMENT ON THE ISSUES

  4. Scott michaels at 7:13 pm

    to Darlene
    Sorry I meant to say 20 million take their medication as directed not 2 people. 20million people do the right thing and.we should not suffer because a few thousand addicts couldnt ow directions.
    Im so tired of hearing about people that lost someone to drug use. EVERYBODY KNOWS SOMEBODY. YOU DONT BLAME THE DRUGS YOU BLAME THE PERSON. IF THAT WERE THE CASE THIS COUNTRY SHOULD.STOP SELLING.ALCOHOL, CIGARETTES AND CHOCOLATE ICECREAM

  5. Darlene at 5:29 pm

    Seriously Scott Michaels, you think that you and one other person are the only ones who take their meds as directed? This is the same problem that people with RSD get questioned about our pain because people think it’s only because we want pain meds. I would so welcome another way to deal with my pain because pain meds do help but not like I would like them to.

  6. Celeste Cooper at 9:17 am

    Well said Christiane. TY Ed for continuing to include such important information. Here is my comment placed on the docket at http://www.regulations.gov/ As someone else said in the comments, please leave your comments at the provided link or it won’t be counted. We desperately need the patient voice to be heard.

    Your Comment Tracking Number: 1jz-8mt9-vz3d

    I believe the CDC and many others have confused addiction/abuse and tolerance. Opioids are usually the treatment of last resort. Other medication options available have far wider reaching consequences, yet we never here about those or related deaths. Why is the CDC suggesting any restrictions of opioids to patients who need them to function? Pill mill doctors should be dealt with through other channels. Those who are addicted should have access to free treatment that is not based on their ability to pay. Both communities of people deserve to be treated humanely, so why are you wasting time and money when it would be better served to improve health and function. There are no long-term studies to prove that opioids do not work for treatment of chronic pain. Not all patients require escalated doses of opioids and those that do, can be and should be educated according to individual needs, but it is the patient and physician that need to make these decisions based on the patients individual needs, not some cookie cutter biased approach. Stop judging people simply because they have an untreated condition that causes chronic pain. Hindering their access to care they know provides relief will not treat the addict, only family support and available treatments known to work will curb the drug abuse conundrum. Someone from every aspect of pain care should be included to make any policies regarding patient care, including the patient.

  7. Cindy Perlin at 9:01 pm

    Christiane, I don’t think that anyone should be abruptly taken off their opioids or denied medication that is helping them until there is a better solution for their pain problem. That is medical malpractice. However, since you say that the opioids “barely work” for your pain, I do have some suggestions that have been shown to be helpful for CRPS sufferers. A raw food diet provides critical enzymes that promote healing and it is also anti-inflammatory. If you can’t go all raw, incorporate as many raw foods as possible into your diet, especially fruits and vegetables. Hand temperature biofeedback promotes relaxation, which increases circulation to the peripheral tissues and promotes healing. Low level laser therapy promotes cell healing by increasing cell permeability allowing more oxygen, ATP (cellular energy carrier) and nutrition to enter the cells and more toxins to be excreted, resulting in accelerated healing. If you incorporate one or more of these therapies (the more the better) you might find that you feel much better and can decrease your use of opioids. I know someone who cured her CRPS with a raw foods diet alone. If you’d like more information on these therapies you can read my book, The Truth About Chronic Pain Treatments: The Best and Worst Strategies for Healing Chronic Pain, available on Amazon.

  8. Kristine (Krissy) at 5:56 pm

    Scott – good work! Would you share your flyer online so others of us could use it and form it as we would need to take to our doctors? Don’t use a PDF though. Write to Ed on the NPR website and see if he would set up a link. I would do what I can. Like you, I did too much today and I’m back in bed in agony. At least it’s time to put on a fresh Fentanyl patch (when I can get out of bed again),

    Thanks,
    Krissy

  9. B Waitt at 3:58 pm

    Thank you Ed and Christiane Parsons ! ty NPR for keeping us abreast of all this information-I did notice that there are lots of people commenting on these articles adding the CDC docket # info with their comment- WE NEED you to comment on the regulations . gov site please- It does no good to waste your energy/time doing it the wrong way- PLEASE DO IT THE RIGHT WAY. thanks all

  10. Scott michaels at 3:40 pm

    I agree, the problem for me is my pain rarely allows me to get out much and Schools out TIL MID Jan.
    i have gone to 3 pain management facilities and handed out about 100 fliers.
    the problem is unless you read this stuff nobody knows this is even happening!
    WE NEED and DESERVE AIR TIME LIKE PROP GOT.
    WHEN I SPOKE TO PEOPLE 90% HAD NO CLUE.
    I HOPE SOMEONE OUT THERE CAN HELP US GET OUR VOICES HEARD. ITS NOT LIKE THE CDC WENT PUBLIC AND TOLD THE WORLD HOW THEY LIED TO US AND NOW EVRYONE HAS AN OPPORTUNITY TO GIVE THEIR OPINION
    UNFORTUNATELY I TRIED TO DO MORE THEN I SHOULD HAVE YESTERDAY. I AM PAYING THE PRICE. EVEN WITH MY MEDICINE I CANT GET OUT OF BED. THESE ARE THE TIMES I SHOULD HE ABLE TO TAKE AN EXTRA PILL, BUT I CANT BECAUSE KAISER COULD CALL ANY TE FOR A PILL COUNT AND IF U DONT HAVE THE EXACT AMOUNT THEY WILL CUT ME OFF. WHAT HAPPENED TO THIS COUNTRY!

  11. Kristine (Krissy) at 2:11 pm

    Scott Michaels, you gave me a thought. Maybe the NPR could do some kind of story on what is happening on college campuses and on the streets. Get some quotes from young people who know the in’s and out’s of the drug trade (a little). Especially if we all share an article like that on FB, there might be some interesting comments and points we could bring up to the CDC.

  12. Medea Karr FNP at 12:51 pm

    Beautiful. The CDC and politicians need to hear more stories like this to put the opioid issue into perspective. Thank you for sharing your story, and for staying strong despite the constant torture of CRPS pain.

  13. Becky at 10:57 am

    I totally agree with your thoughts hun. This morning I read an article 11 overdoses in 2 weeks from illegal, fake prescription opioids. See what the CDC is causing? Drug dealers cartels are making fake opioids killing even more. Restricting these medications from legit pain patients is not going to solve this problem! Open your eyes, PROP, and CDC!

  14. Heather at 10:36 am

    Fantastic! I would love to see more responses. This gives me something to build on and to think about. I’m taking great care in preparing to submit a comment, myself. Having pain and fatigue means I can’t think as clearly and as easily as I used to, so please do keep sharing stories and responses. I’ve actually taken notes from this one on points that also apply to my situation. I especially agree with the line “People who are addicted should not dictate my use of pain medication.”

    Christiane, I’m sending warm wishes from Pittsburgh, PA. I’m sorry you’re having to live with chronic pain but thank you for lending the chronic pain community your voice in this issue. This was a well thought out response and I feel it will be persuasive.

  15. Kristine (Krissy) at 10:32 am

    Christiane, I am so glad you are sharing your story. I don’t have CRPS, but I do have several problems that cause me to live in chronic pain. I have a great friend with CRPS and I am learning more about it and trying to reach out to some of the support sites and FB pages.

    I am so sorry you have to live like you do, but so happy you have a wonderful family.

    Good luck, my dear and happy holidays!

  16. Scott michaels at 10:16 am

    very nicely said. we are just 2 of 30 million people that take our pain medicine as directed. we should not have to alter are already hard existance because some people decided to use this medication as a way to get high. The CDC JUST DOESNT REALIZE HOW MANY PEOPLE, ESPECIALLY INJURED WAT VETERANS AND YOUNG PEOPLE WILL JUST TURN TO HEROIN. I WAS DISCUSSING THIS WHOLE SITUATION TO MY NEPHEW IN COLLEGE. HE SAID NOBODY WANTS PAIN PILLS. THIS BIG THING IS POT, COKE, ECSTASY AND HEROIN. ANY OF THOSE DRUGS CAN BE FOUND ON THE USC AND PROBABLY EVERY OTHER CAMPUS IN THE COUNTRY.
    HE ASLO SAID ” IT WAS ONCE EASY TO GET PAIN PILLS THEY WERE EVERYWHERE 4 YEARS AGO. NOW THEYRE TOO HARD TO GET AND HEROIN IS A LOT CHEAPER AND EVERYWHERE. HE SAID HEROIN IS THE REAL PROBLEM.