Take Our Hand – The US Pain Foundation

Take Our Hand – The US Pain Foundation

By Suzanne Stewart.

Many people ask me about the US Pain Foundation. They ask me “what does the US Pain Foundation do? What are they doing to help with the Opioid crisis?”  I thought I’d explain what they are doing and what kinds of things that I do, as an Ambassador for US Pain.

The US Pain Foundation does not seek notoriety—it works on making sure the pain community is aware of options they have in order to live better lives. If you visit USPainfoundation.org; you’ll see a myriad of resources to help.

Suzanne Stewart

I’d really like to inform you of some of the different projects that are going on within this non-profit organization–which is the largest patient advocacy group.

The US Pain Foundation is being very proactive for patients during this time of unrest and uncertainty.  They have devised a plan for patients. This plan can be printed out and used by patients during an emergent situation; such as being dropped from their pain physician or if they feel desperate and/or suicidal. Here’s more on that.

There has been a lot of discussion (much of it on the National Pain Report) about more people speaking with Congress and state officials and making the case for better care for the chronic pain community.

US Pain is one of 31 patient & professional organizations/groups that have submitted a letter to Congress. In December 2017, these groups sent a letter urging Congress not to repeal the Ensuring Patient Access & Effective Drug Enforcement Of 2016. If it is repealed, this would hurt protections for chronic pain patients. This law would stop the DEA from limiting controlled substance pain medication distribution in a transparent way; also lacking due process and/or safety!

The entire move to repeal was ignited by the “60 Minutes”story”EX-DEA agent:  Opioid Crisis-fueled by Drug Industry and Congress”, which was on TV in October 2017. The persons at US Pain, who deal with many of these kinds of issues, are:  Shaina Smith, the Director of state Advocacy & Alliance Development, and Cindy Steinberg, the National Director of state Advocacy.

“Legitimate patients with chronic pain are being forgotten,” said Paul Gileno president and founder of the US pain foundation. “The disease of addiction is taking over the disease of pain and everyone is forgetting about the Pain Patient.”

US Pain also has designed a new app called “Ouchie”, where you can keep a log of your pain journey.

US Pain’s Ellen Smith is helping with another alternative to Opioids, which is medical cannabis.  Ellen is a Board Member and she does webinars and teaches people about the correct use of medical marijuana. She and her husband were featured recently on National Pain Report.

I really urge you to check into the US Pain Foundation website.  We have Awareness programs, Educational programs, Support programs and fundraising programs. You are welcome to always ask me anything, but please know that the US Pain Foundation is there for all of us!

(These views are my own & not necessarily the views of the US Pain Foundation)

Suzanne has lived with a Systemic CRPS & several other chronic pain illnesses since a MVA in 2002. Prior to being disabled from chronic pain, she was an Interpreter for the Deaf at a hospital & worked with Deaf children. Since 2005, Suzanne’s been a patient Health advocate, support group leader & Mentor.  She continues doing these things today, but also does public speaking, awareness events and she’s a Writer/blogger & an Ambassador for the U.S. Pain Foundation. The statements and opinions that she provides are her own and should not be taken as the stance, position or viewpoint of the U.S. Pain Foundation. For entertainment she creates advocacy videos & uplifting ASL cover song videos on You tube and she writes in her own blog Tears Of Truth. You can follow her here: TearsofTruth.com

Authored by: Suzanne Stewart

There are 22 comments for this article
  1. S Cohen at 7:11 pm

    Dearest April,

    My heart breaks for you. In a sane society, doctors would be falling over themselves trying to make you as pain free as possible. But that’s not how things are done now. With all you have to contend with, why in the world should you have to think about those who seek out heroin? I’m so very sorry for all of us who are caught up in this web of despair.

  2. John at 12:27 pm

    Money…Money
    ..Money
    ..,Money thats the reason the pharmaceutical company want Money and more Money.They do not for cure for people with chronic pain .We have a black market drug sells in this country ,why not the WAR on illegal drugs. DEA agents hit the streets of USA
    Not the doctor office go where the criminals are
    .DEA agents stop the drugs coming in this country.U raid the poor doctor office the guy down the street laughing at you When the day come when find a cure for CANCER who will be able to afford it.Stock market will make MONEY
    .not caring about the people they can cure
    PHARMACEUTICAL company not made the cure they ne happy for their money.MAkE AMERICA GREAT AGAIN
    CORPORATION AMERICA..so us chronic pain people we are pawn shop people making money off us
    .Remember their is a WAR on OPIOIDS.so there a company right trying to take advantage of this The problem are not all PHARMACEUTICALS but the crooked omes like WELLS FARGO.To cut perople who use opioid medocine right .Make laxy CONGRESS work nothing but talk
    HELP THE PEOPLE WHO SONS AND DAUGHTER FIGHT AND DIE FOR THIS COUNTRY

  3. April Dunn at 8:27 am

    I have also found myself on the short end of the stick as well. I suffer daily from fibromyalgia, hip displacement, endometriosis, adhesions through out my whole body, muscle spasms and chronic back injury and pain. I was prescribed 120 tramadol (4 a day) to moderate my pain by my gp. Recently it was cut in half. Caresource will no longer pay for it. The reason I was given by my dr is that the state of Ohio is only allowing a limited number of qualifying conditions to have access to a month worth of meds, versus the 7 day “non chronic pain” prescription. What I don’t understand is how this stops the heroin from flowing the streets. When you rip away medication that allows one to function, you, black market drugs become your only option. Granted, the pharmacy industry needs to accept responsibility for the great opiate push in the late 90’s/early 2000’s, but care should be taken for chronic pain patients. It’s not the government’s right to tell my dr was she feels is right for my treatment, especially when I’ve exhausted all other pain management options such as OMT/Physical therapy, rotating Advil 800/Tylenol 4 times a day, Heat, cold, massage and so forth. I’m responsible with my meds and take them to simply have a quality of life worth living.. everyday is a struggle..

  4. Nancy at 6:56 am

    In regard to the question by F.S.T., can anyone answer that? This may be the best way to get attention and get something done. I am sorry to say that I don’t think the legislators are listening no matter how many letters we write.

  5. FormerPatriot at 6:42 am

    The FDA and the DEA and now CVS are practicing medicine without a license.

    Any competent physician should agree it is the worst kind of medical malpractice to prescribe treatment for a patient that he or she has never seen, yet this is exactly what the CDC and by its silence, the AMA, are doing when they force doctors to obey a blanket rule to reduce opioids for every chronic pain patient regardless of that patient’s history.

    Then again I am not a physician, so what do I know?

  6. Rita KIMBEL at 5:57 am

    Thank you, this is going to be a rough year, I’m going to need an advocate and advice for major changes in my pain management. It nice to see i have resources hear and can pick up information from others that I wouldn’t be able to get otherwise. I live very rural in PA. and can’t find local support and I have been reading Pain Report daily. Thanks again for what your doing Suzanne your info is helping me and I appreciate what you do.

  7. Nancy at 7:05 pm

    I have just recently subscribed to the National Pain Report. I am finding it to be very informative and insightful. I have a family member who suffers from chronic pain. After seeing doctor after doctor, we have finally found a Pain Specialist who
    Is helping. However, the insurance company is now refusing to pay for the medication as a result of the CDC guidelines. I am working on an appeal that continues to get more and more complex. Can anyone suggest a contact for me to get advice and assist in the writing of the Appeal. I feel legal assistance is needed at this point. I need help. Thank you

  8. S Cohen at 4:32 pm

    Check out the NBC SUNDAY NIGHT NEWS from 1/7/18. According to the story, if I join a chronic pain group that takes walks together, meditates, and does other activities, I will no longer require opiates for my CRPS. The idea is to learn to live with the pain as best I can without any opiates.

    In addition to the incredible pain from CRPS, I have been having the most horrendous anxiety attacks in my life, anticipating this exact event. By the way, a couple of weeks ago, I enjoyed several days with very little pain. Consequently, I took no opioids. I suffered no withdrawal symptoms or anything else. I was beginning to think that I was miraculously cured. Then, all the same CRPS [edit] came back. And back on opiates to enable me to get some laundry done and live my life.

  9. F.S.T. at 3:23 pm

    Is it feasible to get a class action suit, include documented chronic pain patients, and file it timely to reverse this crazy trend? I can’t wrap my head around WHY THE POWERS-THAT-BE CANNOT DIFFERENTIATE BETWEEN CHRONIC PAIN PATIENTS AND JUNKIES! I really can’t. But in the meantime, we’re committing suicide or going to bed to stay. At least I have good memories of being functional before this War on Pain Relief started. I’m grateful I was able to taste life without pain.

  10. Steven Smith at 1:39 pm

    Thank you Suzanne for your work in this much-needed area. Unfortunately for most of us we are running or have run out of options and pills. How can someone stay upbeat when it is a daily fight for survival? Now we are supposed to see a pain psychologist and a physical therapist like that’s going to reduce our pain. The so-called opiate crisis is a crisis for only the people who actually need them ending with the obvious. This is the modern medical solution to the problem.Thanks again

  11. Suzanne Stewart at 1:13 pm

    Larry, I’m not 100% sure of anything. But if you click on the link that says “there’s more on that here”, it takes you to a list of steps that you can go through to try and help yourself. For example, if you’ve lost your Dr or your pain medications, there’s a few things that you can do. It gives you exact steps to take. I’ve printed it out and I have it ready for when this happens to me. Its a scary time and I am not able to take Cannabis either. But I know it does help many! Thank you so much for the kind words everyone!

  12. Ibin at 12:07 pm

    Denial of a medication,, even a scheduled subtstance that has been proven to effectively manage a patients pain level that has been documented, by the provider, and said provider also having to “justify” ( term stated by my state medical board )that the medication prescribed IS enabling, assisting in pain management, and not…..physically or mentally negatively affecting the patient, used for pain management for decades, is senseless to me. Whatever therapy for pain management that enables, effctively helps the lifetime pain patient navigate their duties in life when the patient is deemed a “chronic” pain patient is the correct pain management therapy for the individual patient. The patient is now forced to either sufffer the daily same ole situtaion of attempting to manage our pain with what……we can. There are…..patients that have been enabled to their highest capacity of function for decades with opioid medication without “incident”. No evidence of any type misuse in any way with use of a legal substance used for pain management only, we the patients, have been sanctioned personal med without merit. ALL patients that have found that opioid medication is the most effective medical therapy to help manage our pain issues have been targeted regardless of every patients personal success of use with the pain management therapy that is best, most efective, amd least invasive physically amd emotionally. I appreciate the US Pain Foundation efforts of advocacy for the patients now living a more difficult life. It is my belief, as well as many other patients, people that an effective form of pain management has simply been limited, for one and all yet the stated desired result of CDC policy was to reduce the drug overdose rate in this country and declare a “crisis”, an opiod crisis. The overdose rate is still rising from the some 55,000 overdose casualities in 2015 which is tragic to some 66,000 in 2017.but, their were approximately 66 million less…..prescriptions for opioid medications written in 2017. For some, many patients that have to travel through the rest of our lives attempting to manage pain that can not be curbed or “cured” we need an effective way to manage lifetime pain……now. Studies in alternative areas for pain management is fine but agian the populous of people with intactable pain are “still here” with many states not making available ANY safe, effective means for pain management. AS a patient, I know that if the authoratarians (if transparency exixsted) had to live like us, the current “opioid crisis” would not exist. MORE power to all advocates, advocacy foundations, and individuals that don’t quit the argument against the unwarranted issue of medication sanctioning, unsubstantiated removal of any medication that helps manage our pain issues without personal harm or harm to anyone else.. Lastly more power to the physicians, the advocates that know patients are having to struggle now that have years, decades of history of positive, enabling, personal medication use in the form that helps manage our pain most effectively. Patients feel victimized, abandoned, and un warrantedly either reduced in medication if an opioid medication or totally denied medication. Does dot/gov “listen” any more? Obviously reduced prescribed medication does not seem to be slowing the tragic drug overdose rate yet, long time patients, patients that have no other available means to manage pain continue to suffer under “policy” Sorry to be longwinded about the issue but, my life has drastically changed under policy and I read and understand that MANY lives are extremely negatively affected with the curent policy for opioid medication prescribing physicians, Still PO’d. Can’t help it.

  13. Mary at 10:02 am

    I truly feel in the end of this pain med crisis. We the people with the chronic pain will still have this pain til we leave this world. We as people have lost our voice to express how we feel. My meds help out with mild pain but when your knees, hip, spinal hurts til you are in a sweat you have NO one to turn too. All we ask is to help us with our pain meds. There are doctors that can give toy pain medication but you have to be up in age. I’m 43 but I promise you I’ve had 3 surgeries on my knees and I know I tried and tried to stay happy.

  14. lynn Julian Crisci at 9:59 am

    At what point did we give up control & power over our health to politicians, with no medical training, instead of doctors with medical degrees?

  15. Terry at 9:42 am

    I wanted to comment on the opiate “epidemic “. People at CVS pharmacy are always telling me that they’re not allowed to fill my prescription after 28 days explaining that it’s a new Michigan state law, or that they have the power to change the amount of pain pills that my doctor prescribed. I got so sick of that and did my own investigation. The following is a condensed version of every Michigan state law having anything to do with any kind of opiates for the past 100 years! I think you will find it to be very eye opening. Take the time to read it, it’s long but really makes my point, which is, do your own investigation so you can at least make an informed argument.
    Condensed version: There are, of course, some exceptions allowed for prescribers, such as medical necessity. For example, treatment of an acute medical condition, chronic or cancer pain, and palliative care. So how will this bill change anything? For one, prescribers who use exceptions will be required to document the reason, and specify why non-opioid alternative are not appropriate. Thus, prescriber accountability is increased, and the seriousness of prescribing opioids, due to their highly addictive nature, is underscored right out of the gate. Chronic pain prescriptions would not be impacted by the bill.

    “This bill is only for acute pain,” said Sen. Marty Knollenberg, R-Troy, who sponsored the bill. “When you go in for a root canal or for an out-patient surgery and you need some relief, we are finding that seven days seems to be the right amount of time for most patients.” HB 6045 would place a 7-day supply limit for prescribers issuing an opioid prescription to an adult patient for the first time. Additionally, a prescriber would not be able to issue an opioid prescription to a minor for more than a 7-day supply. The legislation also requires that the prescriber discuss the risks associated with opiate use with the parent or guardian of the minor prior to issuing the prescription. These limitations will not apply to a prescription drug issued for the treatment of substance abuse or opiate dependency. The legislation does supply an exception for providers who feel that a greater number of days’ supply is medically necessary under most conditions, including:
    The treatment of an acute medical condition,
    chronic pain management,
    pain associated with cancer or palliative care.
    Prescribers taking advantage of this part of the law must document the indication for the treatment in the patient’s medical record and attest that non-opiate alternatives are inappropriate for the treatment of the this condition in the judgement of the prescriber.
    Do some research, it may help you in the long run. I’m making a copy of this and requesting that my doctor sign it confirming that he has received it, I will then ask him to put a copy in my folder. At the very least he may feel that he is justified in prescribing the 160 mg of oxycodone per day that I take, and it used to be 195 mg but he got scared and reduced my prescriptions, and yes it affected me quite a bit. I’ve broken my back twice, had 18 major reconstructive surgeries on my legs, broken hands, ankle,fingers, toes, dislocations (8 total), osteoarthritis in 90 % of my joints, carpal tunnel, trigger fingers, 2 quad tendon ruptures, as a result I have developed CRPS, look it up. I also have 6 mortons neuromas on my feet. The main take away is DO YOUR HOMEWORK! Don’t go into battle with no bullets in your gun. Feel free to drop me an email if you need info or just need to vent, we’re all in the same boat and we have to help each other. God bless you all.

  16. Larry at 8:51 am

    Why if your legitimate and take pain meds like your doctor prescribed why would people like me with MS , PBA. and PKD and depression going to do. I’ve had 4 MRI 3 CATS and 3 Ultrasounds. Please address my situation if you will.TY Larry.

  17. Margaret Adamson at 7:48 am

    I can’t take cannabis for my pain. I really felt awful when I tried it. I have turned to Kratom, it helps with the pain somewhat and I don’t have the side effects from cannabis. However, I believe if it helps with pain for so many others, access should be a no brainer. Personally I feel the Government should stay out of our business, it’s an emotional response to opiods, not a rational one. What I mean by this is the outrage felt by all when you see the young become addicted and die. Some from pills another’s from heroin. I don’t know where the road is heading for those of us suffering, but I will say common sense has to be applied.

  18. Rachel at 4:31 am

    I am sorry medical cannabis which is CBD only and does not contain THC does nothing for my pain at all whereas whole cannabis does. Yes I am in the UK where medical cannabis cannot be prescribed for pain but one can still buy it at vast expense: £250 per month. The licensed version costs the same I can’t see insurance companies supporting that massive cost when straight Morphine Sulphate costs pennies. In addition at The University of Glasgow Medical School Pain Dept led by Dr Gordon McGinn he personally told me just a few weeks ago that they have done trials with medical cannabis for pain patients and found it ineffective. Back to the drawing board I’m afraid, give us our opioids.

  19. Linda at 3:50 am

    You, along with some others, are always a shining star here. Such a breath of fresh air you are! Thank you for the information again….it is good to see. Have a blessed day 🙂

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