CDC: All we want for Christmas is our two front Tweets

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Following months of controversy and complaints about lack of transparency, Centers for Disease Control and Prevention (CDC) has published an online draft of Guidelines for Prescribing Opioids for Chronic Pain.

According to the CDC, “This guideline provides recommendations for primary care providers who are prescribing opioids for chronic pain outside of active cancer treatment, palliative care, and end-of-life care”. 1 The draft guideline is available on the federal register and is open for comments until January 13th 2016. As of December 25th 2015, there are 957comments received by the CDC.

At first, the guideline was going to be published without outside comments. The American Medical Association (AMA) released a statement in October stating that this move is “disappointing, given the stature of the CDC as a public agency, the serious nature of the problem, and likely impact of the specific guidance that may be released”. 2 In turn, the CDC plans to consult with a stakeholder review group, only two of which represent patients, the American Chronic Pain Association and the American Cancer Society (ACS). Cancer Pain?  With so many patient focused pain support groups, why ACS? – The guidelines were written for noncancer pain as noted above.    

Several patient groups should have a voice in these guidelines.  There are support groups for fibromyalgia, arachnoiditis, medullary sponge disease, Ehlers-Danlos syndrome, various forms of arthritis, chronic back pain, and countless others.  In this blog, we ask that all of you come forward and provide the name of your group and links to your websites!

The Executive Director for Physicians for Responsible Opioid Prescribing (PROP) Dr. Andrew Kolodny, who is believed to have input on the CDC opioid guidelines, called opioids heroin pills in this C-SPAN  interview (see time stamps 23:00, 41:10, 40:21) and also stated that patients may not be able to trust doctors who prescribe them and many patients taking opioids for chronic pain mistakenly believe the drugs are helping them, when the vast majority of them are not doing well.3 While PROPagandists continue this rhetoric and criticize chronic opioid therapy for lack of supportive long-term evidence, they shamelessly use lack of evidence as evidence of absence.

Speaking of quality evidence, the CDC guidelines are based on evidence that is “low quality” or “very low quality” yet assigned strong recommendations to the statements.4 “Evidence cited to support the guidelines “is low to very low and that’s a problem”, said Sharon Hertz, the FDA’s director of the Division of Anesthesia, Analgesia and Addiction Products.5 As a matter of fact, all of the 12 recommendations are based case series (level 3 evidence) or expert opinion (level 4 evidence) yet listed as strong recommendations (grade A).  “This is a ridiculous recommendation from my perspective. Very low quality of evidence, yet a strong recommendation. How do you possibly do that?” stated Richard Ricciardi, PhD, of the Agency for Healthcare Research and Quality.6

The American Medical Association (AMA) released a statement in July 2015 stating “America’s patients who live with acute and chronic pain deserve compassionate, high-quality and personalized care and we will do everything we can to create a health care response that ensures they live longer, fuller and productive lives”. 7 However, these CDC guidelines prove otherwise, and if implemented, could have a dreadful impact on pain patients and their loved ones. In a survey of over 2,000 patients by Pain News Network, “over 90% said the guidelines were discriminatory and would be more harmful than helpful to pain patients”.8

If implemented, these guidelines could drastically reduce the prescribing of opioids for chronic and acute pain. The CDC guideline states that prescribers “should generally avoid increasing dosage to ≥90 MME/ day”.

Morphine 90mg equivalents based on what evidence?  And, whose equivalence recommendations do we use? In 2013, posted The Answer is Morphine 100mg Equivalent – Morphine Jeopardy where this was clarified.  In November 2015 an article was published in Pain Medicine that solidified the fact that there is no acceptable morphine equivalence, and if there were, it still wouldn’t account for individualized patient variability and drug interactions.9 We wonder if the psychiatrists aligned with PROP and those advisors on the CDC panel would use the same antidepressant at the exact same dose, with a ceiling cut-off for every patient.  And if a patient didn’t respond to that cut-off, if suicide from unresponsive antidepressant therapy would be an acceptable outcome – we don’t believe that is an acceptable outcome for pain and/or depression. It’s just not that simple.

“Who drafted these controversial opioid guidelines” was a question raised by many including The U.S. Congress.10 This was followed by a

Who are the villains?

Congressional letter to the CDC Director demanding full disclosure and transparency to identify the Core Expert Panel no later than January 5th 2016.  The letter stated “to date, the CDC has not identified the group’s 17 members”.  Of particular interest is that PROPagandists are quick to criticize Big Pharma and various well-respected clinicians who advise them as paid consultants.  The reason anyone even knows of their relationship with Big Pharma is because these renowned experts have been wholly transparent and are required by the Sunshine Act to disclose such potential conflicts – they are the honest ones with high integrity, not the villains that PROP followers would lead you to believe.  But, the very PROP folks that have criticized their honesty have been protecting their own dark secret conflicts within PROP and collaborating with the CDC.

The recommendations in the guidelines are mostly based on “expert” opinions, but it begs the question; who are the experts and what is their expertise?  Pain News Network disclosed on September 18, 2015 that out of “15 people in the Core Expert Group, only one of which is a physician with expertise in pain management”.11 There were also no patients on the panel. There is not a single practicing pharmacist on the Core Expert Group, a panel that is bantering around issues related to drugs. That’s sort of like talking about feet without a podiatrist or orthopedist specializing in foot surgery.

There are up to 100 million patients living with daily chronic pain who deserve “compassionate and high quality care” according to the AMA.7 Placing drastic limits on opioid prescribing is not the solution to the overdose pandemic, and could have a harsh impact on their wellbeing.

We need to promote safe opioid prescribing instead of incorrectly sensationalizing opioids as “heroin pills”, and labeling patients with legitimate pain as “drug addicts”.

We need to improve awareness opioid overdose risk instead of claiming that the risks outweigh the benefits of opioids. According to a recent study by Dasgupta’s and colleagues, of 2,182,374 patients prescribed opioids, 478 overdose deaths were reported (0.022% per year).12  Pretty incredible right?

According to yesterday’s PROP and the ‘Opioid Lobby’ post by Pat Anson, “Over 600 comments have been received since the comment period opened on December 14 and many of the recent ones apparently are from PROP supporters. They often parrot instructions made by Kolodny in his newsletter.”

If you are a patient reading this blog, we ask you to write a response from your heart to the CDC, not a canned prewritten cut and paste that comes from PROP as outlined in above. We ask that you encourage others to do so by any social media platform at your fingertips (ie. Twitter, Facebook, Google, LinkedIn) and to encourage your advocacy groups to do the same.   This is your chance to be heard!

Comment and provide the website of your support group and

Tweet Tweet!

Mena XmasA special thanks to coauthor Mena Raouf, a 2016 PharmD Candidate at the Albany College of Pharmacy and Health Sciences, with a concentration in Nephrology. Mena moved from Egypt 5 years ago to start pharmacy school and career in the U.S.  He hopes to complete PGY1 and PGY2 Pharmacy Residency and practice as a clinical pharmacist specialist. He completed an advanced practice rotation in pain management under the mentorship of Dr. Jeffrey Fudin.


  9. Rennick A, Atkinson TJ, Cimino NM, Strassels SA, McPherson ML, Fudin J. Variability in Opioid Equivalence Calculations. (2015) Pain Medicine.
  12. Dasgupta N, Funk MJ, Proescholdbell S. et al. Cohort Study of the Impact of High-dose Opioid Analgesics on Overdose Mortality. Pain Medicine 2015


19 thoughts on “CDC: All we want for Christmas is our two front Tweets

  1. I currently have Chronic Adhesive Arachnoiditis. The pain felt daily is overwhelming. The new guidelines proposed would affect my quality of like so greatly that I am concerned if my life would be worth living. I do take opiate medication for pain relief and even though I am not pain free it does enable me to be able to get out of bed most days and help me be able to participate with my family. I am a mother a wife and a grandmother. Even though my life has changed drastically, before being put on opiate pain medication there were many days I did not feel I could go on with life. I am now able to get the pain to a more tolerable level to smile again and care for myself a little better. Caring for my family that is limited is much better than not being able to care for them at all. Having to make trips to my doctor takes days to recover from the drive, the wait and extra energy to just get there. The pain from Adhesive Arachnoiditis is comparable to stage four cancer without the release of death. It effects other organs and has caused extreme widespread pain. Sleeping has no pattern due to pain and having to change positions regularly. It has caused fainting also vomiting from intense pain. My colon has been affected causing flares of colitis, urinary incontinence with sudden urges and leaking. Thank you for mentioning arachnoiditis in your article.

  2. We are the faces of AS and we are on American arthritis foundation website. I am face number 731. Charlene Bedford. Also several chronic pain groups, AS groups, auto-immune groups. I am 37 with 2 small children. I was diagnosed with Ankloysing Spondolitis 3 years ago. One day I couldn’t walk, several doctors and tests and boom a dx. Severe damage in SI joints, entire pelvis covered in arthritis, hips, shoulders, ankles….EXCRUCIATING PAIN 24 hours a day, 7 days a week, for 3 years now. At the end of my rooe then went to pain management. Treatments – 4 biologics have failed, injections have failed, DMARDs have failed, surgery is not an option too much damage.
    No more needles they can’t get them into the joint from the severe damage of arthritis. I was told I have the bones on 150 yr old from my pain Doctor. She never has seen anything like my X-rays. Well let me tell you, because of her and 200mg MME I AM ABLE TO FUNCTION, take care of my kids and go to work. WITHOUT THEM I WOULd HAVE TO KILL MYSELF BECAUSE THE PAIN IS WORSE THAN WHEN I WOKE UP ON THE OPERATING TABLE WHILE HAVING A BABY – CUT – OPEN. The anesthesia wore off and I woke up, cut open. This is worse than that. my back burns, stings, and feels like a knife is stabbing me 100 times an hour. I scream cry and lay ON 5 big ICE PACKS until the pain goes away from taking my pain pills. I go from a pain scale of 10 to 5 in 15 minutes and I carry on my day. I live in pain, but without them I couldn’t live at all. Maybe it was the epidural that punctured my spinal cord with my first son. No one knows, but I have to keep fighting for my boys. They are 10 & 7 years old and I am a single mother with no help from anyone available to me.
    I’m sorry with all due respect, how can someone. Be so heartless? ??????

  3. Thank you Thank you Thank you for including Ehlers Danlos! Even trying to find a doctor who even understands it is impossible, let alone get them to understand the pain associated with it. I’m 59 and fused L2-S1 and both SI joints. They tell me eventually L1 will fail too and then it’s T10 down. Yet not one of the surgeons or pain clinics EVER even mentioned EDS, even though everyone agreed I was extremely hyper mobile and my joints were not very stable. My PT also recognized the EDS as she’d done a practicum with children who had it. Unfortunately for me, by the time I found her I was pretty much fused – yet she says she still can’t understand how I still have so much movement. So of course that makes me automatically suspicious when I talk about my pain levels because I have so much movement. When I went into an urgent care clinic in so much pain I was crying, when I got the notes later under heading of Exaggerated Pain Behavior – it checked yes!

    In Montana it has become almost impossible to get any pain relief or even find a pharmacy to fill even when you have a LEGITIMATE script. Yet none of those doctors who won’t help me manage my pain, which if it was I could probably work some, won’t even be bothered to help me access SSDI.

    At 59, after working since I was 15, never used any public assistance programs, was an advocate for many marginalized groups for 30+ years feel like now I’m being kicked to the curb. Never in my life did I expect this kind of treatment.

    Please, everyone, make sure everyone in all your groups is responding to the CDC guidelines-this is a matter of life and death for many of us, death by suicide will go up.

  4. Let’s promote safe prescribing and more research into pain care. Let’s end the bias that pain patients face. I really do fear for the future of my grandson who has severe Marfan’s if these type of policies go through. He doesn’t need pain care now, but there ‘s a huge likelihood that he will in the future. In my immediate and extended family we have Ehler Danlos 3 with associated joint and disc issues and constantly changing pain, Marfan’s , Centralized Pain Syndrome, Hashimoto’s , Hypo-pituitary with Secondary Addison’s and Hypogonadism and Hypothyroidism, PCOS, Diabetic Neuropathy, Compression Fractures from Kyphosis, Post-Concussion Syndrome, Pudendal Neuralgia, Post West Nile Virus issues, Burning Mouth Syndrome, along with genetic CYP2D6 Ultra-rapid metabolizing (which requires a very skilled pain specialist and non-standard doses of medications). The family member with the Ultra Rapid metabolizing developed Centralized Pain Syndrome from under treatment of pain after a surgery and a few more injuries afterward. No one believed that he was still in pain with moderate level pain medicines. Not one pain doctor in our area even knew to test him for CYP2D6 metabolizing. He was told to just live with the pain by a pain doctor who did mostly shots, and ultimately almost died when his pituitary and adrenals crashed. From pain. Thankfully we found a specialist just in time who saved his life with proper medical care, including pain medications, and he is doing very well now under the care of his specialist in another state. Care like that should be available in every state from properly trained pain doctors.
    ALL of these syndromes that are in my family circle are painful, and are not preventable or curable. I never had any idea what pain patients go through until we needed pain care for our family member who developed Centralized Pain Syndrome. What an education!! The bias, the struggle to be believed, the insults , the trauma of watching helplessly as a loved one is in agonizing pain and not being able to do anything about it. No one should ever be in that position, especially the patient in pain!.
    Not everyone in our family circle who wants to be able to receive the compassionate, skilled, multi-faceted pain care they need is able to. The ones who have tried have all faced bias and ignorance from doctors. In the 21st century. Because of groups like PROP and wrong headed regressive thinking.
    Pain is the orphan disease.
    Thank goodness for the caring doctors who treat pain patients with dignity and respect. They are rare and wonderful human beings ! Thank you all!

  5. I’m permanently disabled. I have Chiari 1 Malformation (I had Chiari Decompression, brain surgery on September 11,2015. I suffer from fibromyalgia, RSD & nerve damage from a broken ankle, I’m a self cath due too urine retention, I had a cervical spinal fusion with hardware 12/21/12, I have degenerative join disease and my right knee is junk from the fracturing my left ankle twice in a year. I live in hell everyday. I have pain literally from head to toe! I goes days with out being able to get up only to use the bathroom or eat. My life will never be pain free. I’m on the lowest possible dose of Percocet 1 5mg 2x’s a day. I should b on a higher does to really help but I bite the bullet! The system don’t care. When I had my brain surgery in September I was given 7.5mg
    4x a day for a month then down to 2 a day then back on my regimen. I think I know what pain is! How dear they do this to people like myself! It’s so hard!

  6. I can’t even take many pain meds, as I am allergic. What I really want is real awareness and not to be looked down on by society in general. I can’t even get disability and I can barely clean my house. Pain is constant, even at rest! What takes a normal person 5% energy takes me 50 or sometimes even 100 . I can still move and do things but not for long and not much and on top of that I pay for it with lots of pain and not being able to do much of anything for days or even weeks at a time. Fibromyalgia has stolen my life and who I am. Work , activities with my family, hobbies all gone. And I just suffer through it saying I’m ok because there’s nothing anyone can do about it anyway. It does make me depressed but I try to stay positive and do what ever I can, with in my limitations. Despite that I’m seen as worthless lazy of not trying hard enough. I need disability care and help and I want a real cure.

    1. Can you hear Christina? “Fibromyalgia has stolen my life and who I am”. That sentence could be Fibromyalgia’s motto. It certainly is mine now! I was diagnosed with FM (Fibromyalgia) in 2007. I had been recovering from cervical surgery, when the pain became worse than prior to my surgery. Since then, FM is a daily prison warden, controlling my every activity. Opiods helped me with my necessary daily activities. I have subsequently decreased the dosage over the past 8 years….suffering from opiod induced constipation (OIC) this past summer convinced me to stop my regular regimen twice a day. I still take small doses as needed (PRN). I’m an RN (disabled, of course), who naturally works hand in hand with my Internal Medicine Physician to learn together about FM and its treatments. We’re now studying Marijuana. I won’t go through another episode of OIC, so I am now testing CBD (a part of marijuana). My Physician and I don’t quite have the dosage and times down yet, but we’re still working on it. The difficulty is finding reputable stores. My state has legalized it, but we’re in the early stages still. Our county has voted to prevent many of the opportunity’s marijuana stores can provide. For me, I now take CBD’S three times/day. I also use a topical cream.
      If not for my. Physician’s knowledgeable dosageing of. opiods for the past 8 1/2 years I believe that I might have committed suicide. My pain varied at times, but was everpresent. My Doctor worked with me always. I believe we should leave the dosaging in the hands of the doctors taking care of the patient. PERIOD. No one else knows me like my doctor. Getting a handle on the illegal trades occurring would be so much more timely than telling a doctor how to treat their patients! You’ll see more suicides and criminal drug sales from formerly “regular” patients who could no longer get pain relief.. Fibromyalgia still controls my life, please let my doctor and I set me free. Please let those studying FM call the shots.

    2. I also am part of a fibromyalgia support group. A person who has not lived with chronic pain has no idea of what it is like. Besides the chronic fatigue, neuopathy, and severe muscle contraction headaches that also go along with fibromyalgia the chronic pain cripples every part of your life. You no longer can participate in any activities you use to do. I am a Family Nurse Practitioner that has dealt with headaches all of my life but at least I could work at a job I truly loved. I would give anything to work again instead of sitting in a chair all day, taking naps once a day because I could not sleep the night before. I am lucky that I have a doctor that believes in the diagnosis of fibromyalgia. Their are so many doctors that think we are fakes and a little exercise would solve our problem. Just because there is no test to prove”fibromyalgia ” some doctors think we are just depressed. Sure we are depressed, anybody would be if they had chronic pain. If I could not get pain medication I am sure I would commit suicide some days when I hurt like I do today! Please consider all of the chronic diseases that cause severe pain and the compassion a physician is sworn to uphold the hypacritic oath to show compassion to all patients. I know there are a lot of people who take their need for drugs. I had to make a lot of decisions while practicing medicine as to the truth of real pain and fake. Usually you can figure out the real fakes and the real people who need help. Please be considerate of those with real chronic pain. Thank you for listening to me..

  7. Imagine if you will a pain so annoying, so interruptive and so utterly debilitating, can you imagine that pain, if you will try and feel my pain. let me describe for you what it is like to be active, smart, and giving, easy right?. now let me show you what Fibromyalgia is like for ME. I wake up ,after two hours of sleep. with throbbing pain in every joint in my body. fingers throb wrist aches, elbows ache, shoulders throb, neck stings and throbs with every beat of my heart. My head aches all the time from all the Pain, below, where my ribs are there is pain. with every breath I take it feels like my tissue is rubbing against a cactus, now, lets move down a bit to my Hips, if you can imagine having a Rail Road spike driven through your bi lat hips with every step you take, having your knees crack and throb with every movement, having your ankles feel like they are swollen and puffy, your toes (dang joints) throbbing with every step you take and not being able to wear most shoes because just moving your toes causes an acute burning sensation, not being able to receive Hugs or sometimes kisses from your spouse because even your skin hurts, wearing PJ most of the day, because your clothes may or may not fit that day ( with Fibromyalgia I can change sizes over night), never feeling up to company because your dog tired, or not writing down your appt’s because Fibromyalgia has a lovely side dish of Fibro fog. ah yes Fibro Fog, I can be in the middle of a sentence and poof it’s gone. I have no idea what I was just talking to you about. can you imagine that feeling or does that scare you? how about laying down to sleep because your so tired of insomnia and you’ve seen every re-run of every show on Tv. only to find out that your RLS (that’s what they call it ) will not let you be still long enough to fall to sleep. can you imagine that ? well with my RLS I have PAIN not just a wiggly, bug crawling sensation but Real Flippen Pain! with every movement my legs increase in pain exponentially to the nth degree. not only can I not lay still but I cant find a position to comfortably lye in longer than 2 minutes. then I’m up again walking the halls of the house trying so hard to be quite so others can rest. I sleep an average of 4 hours a night not consecutive hours but broken up hours through out the night. I have responsibilities. I cant just do nothing all day. even though I would love to sleep and that’s what is on my mind most of the waking period of every day. sweet, sweet sleep. I know if I can sleep then I can function at about 50% of what I used to function before My “Little Death” that’s what I call it. My Fibromyalgia, because it has changed me from a functioning Mother of Two, Wife and Nurse into a Zombie that can sometimes empty the dish washer or wash a load of clothes, only to find that my whole body throbs with a pain so acute yet chronic that I have to sit down and meditate just to calm my pain down. My Doctor gets upset with me for not exercising enough, or having to prescribe me “Narco” do you know what that feels like? the embarrassment that comes with the same ole pain having to tell the doctor that without the Narco I will not be able to function even at 50% It sounds like I’m an addict ! I get the “Look” you know the look, the one where the Doctor doesn’t believe a word your saying because no one can imagine a world with that much pain when you look like a “Normal” person. I have done without my medication for a two month period because, I too thought that I could get addicted, nope , that did not help. I only existed in a world of purgatory not getting anything accomplished. I was sent to a “Pain management” specialist. who had no idea about the “Pain” associated with Fibromyalgia. instead he took a lot of x-ray’s. Pain is not imagined, It is real! I’m not addicted to Narco I’m not addicted to anything except pain. I say this because It seems I cant live without it. I cant fly to visit my son’s or sit in a court room as a juror because I cant sit long enough to be pain free and pay attention. I cant take a Sunday drive with my Husband anymore because again I cant sit still that long. I have missed so much Church that my pastor thinks I have dropped out. grocery shopping takes at least three hours. I have to stop and rest often. don’t get me wrong, Please I can do some stuff I’m not lazy I’m a hard working honest person who was raised to do my best at what ever it is that I do. I will tell you I cant be a nurse anymore. that career takes a lot of processing of a lot of information quickly. can you imagine asking your nurse if your medications have been changed and if so what was changed and why it was changed and what the new medication does for you? and looking at that patient and having a fibro fog storm and not being able to answer any of those questions. or having to push medication cart down a long corridor and supervise Cna’s with instructions, or giving report to an oncoming nurse and having a fog moment. do you know what that feels like? of course not. if you knew then you would not be able to do your job right? so you see taking opioids a way from People with Pain is like taking away the little life they have left and condemning them to hell. if an Opioid helps folks function and exist in todays world as much as possible then don’t condemn us. we never asked for this horrible sentence called “Pain”

  8. I have suffered from fibromyalg for 17 years and chronic back back for about same and chronic neck/upper back pain for about 6 years. My fibromyalgia didn’t get extreme until 5 years ago. Ironically after I started having children and had been in a couple car accidents. I went as long as I could without medication, but it came to the point where I couldn’t get out of bed I would cry daily, couldn’t shower myself. I’m only 37, soon to be 38. I have very young children 6, 4 & 18 months my kids need me to function and for me to function I need to be on multiple medications
    I’m on percocet 10mg 4x daily or vicuprofen 7.5mg 4x daily. I also suffer from anxiety and insomnia. I take Cymbalta, topamax (I weaned off of lyrica) Lorazepam, ambien, Valium occasionally (of course when I’m on valium I’m not on Lorazepam) I take as prescribed. I do PT, I see a pain therapist, I workout (which is so hard, but I know we need to keep moving the longer we sit the worse we stiffen up) my muscles are so tight and knotted I get massage therapy and have myofascial release devices. So many of do try and do many other things and don’t strictly rely just on the meds, but also know that if we didn’t have the meds we wouldn’t be able to even have close to a somewhat normal life or somewhat of a social life
    I can’t imagine having all my meds taken away from me. Some days my pain is so severe the meds don’t even seem like they take the edge of so I can’t imagine with none. I also go to the chiropractor 3 times a week. I suffer from tmj and migraines

  9. As a sufferer of both Rheumatoid Arthritis and Ankylosing Spondylitis I must be able to access opioid pain medication. Years and years of alternative therapies have left me exhausted and in some cases (a surgery) worse than ever. Life is limited for me now, but I’d like to at least continue at the level I’m at presently. Without opioid treatment, I will surely be in a wheelchair, or bedridden. There is no cure for me in sight, but with opioids I can fix dinner and do a load of laundry, I don’t think that’s asking much. There are many of us, we need the consideration, because unfortunately we don’t have much of a chance at life without our opioid painkillers. Please give this your utmost and full attention, we are depending on you for the deepest consideration of our dilemma.

  10. I have suffered from fibromyalgia for eleven years. I have tried everything from physical therapy to a wide variety of medicine. I have been unable to work for 8 years. I do take a low dose of hydrocodone each day. A lot of days it is this medication that allows me to get out of bed. Some days I can’t even with the medicine. What I can tell you is that without the medicine, I don’t know if I could go on. I know there are many others like me. I am afraid that some of us might choose to end our lives rather than living with constant debilitating pain.

  11. As a patient, author, RN, and advocate, I support just about every advocacy group, but I am member of a citizens leadership group for chronic pain, which is under the initiative of the Center for Practical Bioethics called the Pain Action Alliance to Implement a National Strategy. One of the most important things we do in our patient group is to use of feelings of empowerment to make a change in the way pain is perceived, judged and treated.

    Calling all patients, do NOT miss this opportunity to be heard or forever hold your piece. Make your comment in the right place, not in rants across the internet, otherwise it will NOT be heard. Even if it is one sentence, it could make a difference for the millions of us who benefit, are able to function, because we take a opioid to help us manage our pain condition. I beg you, do NOT let others who do not walk in your shoes make decisions for you.

    Make getting that docket number your goal. You deserve it!

    In healing and hope, Celeste

    1. I don’t understand your sentence, “Make getting that docket number your goal.” I want to know how to do the RIGHT things to help those of us who take opioids for pain.

  12. Dear Dr.Fudin,
    I am one of the many people in our group with Medullary Sponge Kindey. It’s been 13 years since I had my first kidney stone. I have a compassionate doctor at U of M who cleans out my kidneys when I can no longer take the pain from my recurrent stones. I’ve have more than my share of surgeries and our goal is always to get me more comfortable in my daily living. I use opiod medication as part of managing my pain .I’ve been told by my nephrologist that MSK is one of those disorders where a change in diet, and increase of water and pain control was going to be my goals. I’ve actually been able improve my situation by constantly working on those 3 goals every single day of my life. If I don’t follow the program my pain increases. I can honestly say that I follow my program and I’m constantly tweaking it to improve my life. I have tried many different things in hopes of improving my situation. My goal was never to stay on opioid medication or anything medication, but my body dictates to me what the next move is. YES, there are a host of side effects from opioid treatment but I have found a way to have a quality of life while keeping my symptoms under reasonable control.
    This year, I was hospitalized 3 times. I have a $9,000 bill that I am working on paying. I’ve been warned that my bills will go to collection if I don’t get them paid in larger quantities. Last year my insurance premium alone cost as much as my husband and 3 children who still live at home. In short, MSK is financially draining us in every way. Now the CDC wants to mess with my pain management. plan. The stress alone is unbelievable. I have children who depend on me and a life to live. If I don’t have tools, MANY TOOLS, to help me live my life I will rot in my bed because of this agonizing poke in my groin and flank. Unless a person has experienced a kidney stone they can’t know what I live with. I have a supportive family and doctor who have been working with me for 13 years. I have my plan in place that I have had to make peace with and I would only ask to be treated with some compassion while I manage a disorder I was born with. There is no cure for MSK, I will have symptoms until the medical world figures out how to treat it. I absolutely cannot afford to persue other treatments (alternate trestments like neurofeedback) that may very well help me have a better quality of life. I have dreams I would like to put to action.
    Thank you for fighting along side of us Dr. Fudin!
    Hollie Navarre
    A part of MEDULLARY SPONGE KIDNEY (Mary Mastons group)
    Kidney Stones Suck
    Low Oxalate group.

  13. My.wife was diagnosed 5+ years ago with MSK at the age of 30. She was a elementary school teacher with a Masters degree and just had our 2nd and last child. Since then, her quality of life has taken a turn for the worse having had countless hospital stays, etc as a result of her condition. She had to quit teaching, give up her duties at church and go on disability. This is a woman that was full of life and energy. Fortunately, she has a primary care Dr that believes her and is doing her pain management. You can’t deal with normal pain management when it comes to kidney pain. She has been in tears due to ER doctors thinking she was just going to er for drugs. It has affected me and my children because my wife’s life for the most part is reduced to being in bed most of the time. I am ready to see Dr’s take this disease more seriously and put efforts into research. I also want to stop seeing patients with legitimate health needs penalized for those that do have chronic pain. Thank you.

    1. I am so sorry and sad you are having to suffer with this. I am also always in terrible pain and have experienced almost exactly what your wife has in terms of being full of life to barely existing in my room. I know I would never have survived without my husband and family. I am so grateful to have them and know how incredibly blessed I am to have them. I would do just about anything to change things and I feel so horribly guilty that they have to go through this with me. I hope you know how much people like you matter. Thank-you from one suffering wife and mother for standing with your wife. You are a hero.

  14. Thank you, Dr. Fudin, for mentioning my group and supporting us! Medullary Sponge Kidney is a little known disease that affects not only my life in a very negative way, but the lives of people all over the world. We are few in number, but too many of us are unable to find doctors and pharmacists that treat us in a compassionate and caring way, simply because they don’t understand the true complexities of the disease. Most have never even heard of it, and some that have don’t believe it’s real. Someone please tell my kidneys that, they obviously didn’t get that memo. Doctors already look at us as drug addicts, simply because they refuse to believe that having kidneys full of rocks can hurt. I can assure you, nothing is further from the truth. I’ve already made a comment on the CDC’s website, and am encouraging my group to as well. These new guidelines are going to make it even harder for us to get medications than it already is. They couldn’t come at a worse time, when we are finally starting to make a little progress in getting MSK recognized as the debilitating and excruciatingly painful disease it is. There are just a couple of doctors in the entire world that are taking our cause to heart, and we still have a long way to go. To go backwards during this time would be devastating. On behalf of our group, I can’t thank you enough for helping us fight.

    Mary Maston
    MSK Advocate

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