A Loved One’s Advocacy to Fight Chronic Pain

A Loved One’s Advocacy to Fight Chronic Pain

By Ed Coghlan

Since we founded the National Pain Report, we’ve met a number of people whose loved ones suffer from chronic pain and advocate for them and the millions of others. One of them is retired pharmacist Steve Ariens. He agreed to share his thoughts about being a loved one and how it has inspired his advocacy. Here’s our interview:

1. It’s plain that your wife has inspired much of your advocacy work–take a moment to briefly explain her condition.

Barb’s health issues are your basic Fibromyalgia (FM), Chronic fatigue, Degenerative Disk Disease and many of the other issues associated with FM. We started dating in the Fall of 1965 – she can probably tell you the exact date, but it is a date that I can no longer recall.  At that point in time, FM was an unknown disease, pts (generally 90% women) with FM were labeled as having “whining woman’s disease”. No medical testing would show anything abnormal. Because she had had Rheumatic Fever as a kid, it was a common belief that the majority – particularly females, would end up with Rheumatoid Arthritis at some point in time. She was able to “forecast” that the weather was about to change because of the “aches/pains” that she would experience at times.

2. Why did you feel you had to get involved in the way you have? (might merge 2 and 3 based on your answer)

Because we had our own independent pharmacy, I didn’t have to march to “the beat” to some corporation’s policies and procedures. For some reason, I have always had a knack for dealing with chronic pain pts. Because of my education, degree, licensure, dealing with chronic pain nearly constantly, both in my professional life and personal life. There is no separation in my life… I have always been an advocate for the “under dog” and my actions/reactions are almost autonomic.

3. Why do you think the pain advocacy efforts are so fractured?

The typical chronic pain pt. is physically, mentally/emotionally, financially exhausted/bankrupt.  There was a recent survey that stated that 90% of the families that has a chronic pain pt. that the family was financially struggling. Because one spouse can’t work and the cost of treating the disease/chronic pain.  If there is still a spouse around, they are often required to do the tasks of both spouses. If there is no spouse, then the chronic painer has to “live” on the meager sum of dollars and services provided by Medicare/Medicaid… If they can find a prescriber that will accept them and adequately treat their pain. “daily life” is a constant … all consuming… struggle.

4. Other than the CDC Guideline (which you have argued punishes pain patients), what is the most important issue that faces the pain community?

The CDC guidelines is just one example of laws/rules/regulations that – IMO – are unconstitutional. This is the area where the fractured chronic pain community can come together. It would take but a handful of advocates to create a non-profit whose sole goal was to collect contributions from the chronic pain community and their supports to create a “legal war chest” to fund such constitutionality challenges to those laws that attorneys believe need to be challenged. For every 1% of the chronic pain community that contributes the cost of fast food meal ($5 – $7.50) – ONE TIME – could raise 5-7 million dollars.  Get them to contribute that amount monthly and a BILLION + dollar war chest is quite possible.  Doing a constitutionality challenge would not take any participation by chronic painers.  Right now it has been reported that no attorney will take on a legal case on contingency basis because under our legal system…. someone who is disabled, unemployed, elderly… their “life” does not have enough “value” to be worth their time to take the case on. If the chronic pain community sent out a RFP (request for proposal) to some quality law firms… stating the goal and the size of our “financial war chest”. they will be beating a path to our door.  Of course, if those in the chronic pain community continue to be completely “passive pain warriors” then there is NO HOPE for changing the path that the chronic painers are on. We are a country of laws.. and sometimes JUSTICE only comes to those who can afford to hire attorneys to defend their rights.

5. What advice would you give other loved ones of those living in chronic pain?

There are no “typical/normal days”.. each day .. what other couples consider a “average day”… could be your “exceptional day”.  You need to understand that plans are often cancelled. no sense of getting upset… because that is the way things are going to be. The spouse needs to be the pt’s advocate… doesn’t matter if it is at the doctor’s office, the pharmacy counter, with the insurance company, and others..  The chronic painer is typically fatigued and may have a “faulty” thought process because of the distraction of the pain. Many tend to be passive and/or not up to a “fight” to defend their rights. The reality of it all is that a passive pt. has poor health outcomes. Pt. may not always be right… but.. they always HAVE RIGHTS.

Some diseases are pretty easy to understand.. a pt. with a back full of hardware is going to have pain… Those with FM is not going to be the same as those with Multiple Sclerosis or other disease states that have pain associated with them.  The more the spouse knows about the complex issues of a disease, will be helpful in dealing with the issues that come up.

Bottom line is to be supportive however you can and expect the unexpected.

Follow on Twitter:

@edcoghlan

@pharmaciststeve

@nationalpainreport

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Authored by: Ed Coghlan

There are 18 comments for this article
  1. david at 2:03 pm

    Tim- I agree with you and what you are doing. If just 1% of people in pain would write a letter on their dissatisfaction with pain care to their state medical board or representatives-then there would be real change in pain care.

  2. Tim Mason at 5:12 pm

    Dave and others on this blog. Often times the solution to our problems is a simple one and costs nothing. Here the cost is only of a printed piece of paper and a postage stamp. Often it is so simple we overlook it as I have in the past. I made my new MD aware of the treatment I received at a recent PM visit. The PA “bad mouthed” my new doctor and I made him aware of what was said. He too will file a complaint on my behalf.
    Let’s focus our complaints, crying, our anger and frustrations to people that will listen.
    We are truly a downtrodden lot.
    Think about it. The price of a postage stamp and someone already on a payroll to investigate each and every complaint.
    We have nothing else to lose and everything to gain.

    “No Man is alive that does not take responsibility for his future” author unknown.

  3. Dave at 7:25 am

    Tim im glad youre making the effort. No doubt doctors need to be called out and the regulators in states that oversee them. We know they dont care for our concerns or complaints. But the more people complain the more costly it will be for them to maintain our poor pain care system. They will wave the white flag and people on pain will prevail.

  4. Tim Mason at 8:32 pm

    Mary the way you are being treated at your age is unacceptable. You are 63 not 36. You are not a risk to addiction. You have a spinal pathology. All medications have risks including OTC medications. You have proven your willingness and ability to stick to a medication regimen without abusing them.
    I feel they are seeing how much abuse you are willing to tolerate.
    My advice is to make an additional appointment to have your medication adjusted. DO NOT WAIT to the next scheduled visit. Yes, you went a period of time on a lower dose but it has cause you increased misery and anxiety. Make the appointment. Be ready to file an complaint with your State Department of Health. The forms can be downloaded and are not complicated. Although you must list your name you can remain anonymous to the doctor or NP or PA that is doing this.
    This is a MUST do for all people having their medications reduced. The state level has the official organ of communication for reporting this but NO ONE is doing it.
    This is why no body is being listened to. Take someone to your appointment as a witness.

  5. mary s at 7:38 pm

    I’m on board with the war chest. Let’s do it, who will start it? Can the Pain Institute start it? We will get the money to get an attorney on our side. This is what we need is $$ to fight these backward non chronic pain people. I say let’s inundate the CDC and all of the others who know nothing of chronic pain suffers.
    People in this world don’t know of the 100 million chronic pain suffers in the USA. There is nothing like chronic pain, when you do take your medication, it only calms the pain for a bit & totally feel it when it is time for another pain pill.

    Since they messed with taking my medication down from 6-4 a day, I can’t do much. My doctors told me always keep a level amount of your medication in your system. (My original spine specialist told me this) I have been on medication since I was 33 & Im 63 now. So I lived a liveable life until they lowered my medication. It was tolerable living the original way. Believe me I wish I could heal, but my neck, nerves are so chronic. My doctor told me he can’t help me the other day when I went to see him. I have tried everything but nothing works, I have so much arthritis in my spine area & horrible nerve damage they can’t do anyth.ng to help me. I need 8 new surgeries, but there are no guarantees any of this will work. I’m not going to be a guinea pig for these doctors. I’ve had enough. Plus I have never gotten a high from my meds, only relief in my arm, back, spine, neck,lower back legs.
    Im 63 & have been living like this since a chiropractor gave me a sideway whiplash in 2 seconds blew 1 disk out & broke into 3 pieces. 1 wedged into nerve root & took 28 drs. & 22 months to see it was only a herniated disk. But everyone was so enthralled by the huge muscle spasms which was locked into the same place now for over 30 years. Nothing helps it, but medication. I get to do the dishes, dress myself, bath, normal things people do every day. If they would of seen it was a herniated disk & they got it right away. I would be intolerable pain to live some kind of a life, but now since they took some of the medicines away from me, I can barely function. My life changed forever. Nothing has been the same. I live on pain & muscle relaxers to get some relief, but the pain is always & comes back full tilt when my medicine wears.
    I want to know why I’m being treated like I dont live in the USA. I was borned, lived & worked here until I got injured at the hands of another. What about my right, what about my protection against to be treated as a human should be treated. They treat animals better than humans, What ‘s up with that?? Living in chronic pain is grueling, mentally destroys any happiness or hope when you have people taking away something they know nothing about. Walk in my shoes for 10 minutes, you will be in tears, like most chronic patients are daily.
    I want my rights heard, I will contribute to the war chest. Let get to the CDC, let’s get something going here. I would think the CDC would be more concerned about the Zika virus instead of messing around with the ill, chronic pain patients. It’s so wrong what the CDC is doing to another human.

    Sorry so long, but this insanity has to stop & give legitimate people back there medications.
    I never went to pill mills, I think they are all closed now, the CDC has a big list of chronic patients, let us have our medication so we can live out the rest of our lives not in excruciating pain & try to function in society.
    I saw a report on 3% people pass each year for medications, but heroin users is 66%.

    Can anyone tell me why this is going on. I’m not going to kill myself, I’m going to take my medication as always per the directions, but that 2 that they took away makes my life a living hell.
    Thank you for reading! LET’S GET SOMETHING STARTED PEOPLE!!!

  6. Carrie at 9:56 am

    Valid questions HJ!
    So, what’s it going to take to get a war chest going? Why can some at the National Pain Foundation find out what has to happen to collect and hold such war chest? Each year, Wikipedia asks for $3, similar to the PBS fund raising.

    Thanks to the guidelines, my muscle spasms are back in force, I am again confined to bed- unable to walk more than a few feet to the wheelchair. I didn’t loss FUNCTIONALITY -just the ability to make it past the disabling pain. If I can’t do it from the wheelchair, it’s not going happen. You can imagine what a toll it has taken on my libido -something that is not discussed much here. But to have had enough pain management (controll is too big a word) to also experience the POSITIVE FEEDBACK from a healthy lifestyle, including the sexual, this is devastating.

    So yeah, my monew should be able to help me. I can’t spend it on prescriptions anymore!

  7. Pamela at 6:41 pm

    Linda,& Renee, you both wrote my feelings living in this world with chronic pain. Mine( I claim my pain, yet I am in control, as I’m not letting the pain control me). Dr Ibsen, thank you for your compassion along with recommending cannabis, truly a miracle Herb. On the 3-6$ donation, to help everyone is a wonderful idea, as well. Thank u for ur work.

  8. MichaelL at 5:19 pm

    I wish I had a way to contribute more than money. As a previous pain physician, I feel I could really help…somewhere. After damaging my cauda equina, I developed a neuropathy and fell victim to a dishonest pain management doctor, who cared more about what invasive procedure he could do to pad his pockets! If the Tramadol would not help, I was just going to have to suffer! Blackmailers really made me angry. Too bad I couldn’t turn green, like the Hulk, and take care of it!

  9. Tim Mason at 4:37 pm

    Dave, I have started a new plan of my own. Each state has a department of health and an official organ to communicate mistreatment, misconduct, and unprofessional behavior.
    I have already filed a complaint on a 28 year old NP for unprofessional behavior. I told my PCP about his actions and he told me exactly how to handle the current state of affairs.
    These complaints are taken seriously. Making a formal complaint is like calling 911. Hopefully and eventually there will be enough complaints to form the ideal of unethical treatment.
    The Nuevo NP or PA is approx. 28 years old and the only knowledge he/she has of pain is a sprained ankle, gas pain or a mild headache from to much alcohol.
    The NP I saw got so mad when I showed him the FDA stats on spinal stimulators he threw down his pen and pad, shook his fists and stormed out of the exam room. I sat there for 30 minutes behind the close door. He eventually returned with my prescriptions and stated I would see the doctor next time. I repeatedly told this kid that our relationship was compromised and I had asked to see the Doctor six months ago.
    Taking note of his new sign stating “NO AUDIO RECORDING OF VISIT ALLOWED”, I told him I now understood why they put that up there and from now on I would bring a professional witness to all visits. He began to call me and sir after that but I am sure it was not because of my gray hair.
    I urge everyone to report through their state. You can even do it anonymously.

  10. Miss M at 3:34 pm

    When war chest article gets written I will donate and share all over social media
    Thank you for your inspiring story ..
    I to have a spouse who is very supportive but at times is not understanding
    After my surgery he got on nurses who could see i was in unbearable pain were ignoring any request I made
    he kinda chewed them out their reply was we do not treat the same way as when you had your neck surgery it was not neck but arm after neck surgery ( i begged nurses to please kill me) I was in agony that was before CDC guidelines
    the only way I got any pain management was I told FP doc if you are not going to treat me send me to pain management cause I can not take it any more and I was on verg of self medicating and seeing new doctor in another system cause 12 years was too long

  11. Amber Bergstein at 12:46 pm

    Great article! And the idea if we all donated we could afford the legal representation we need. I’m game for sure!!!!

  12. Renee Mace at 12:13 pm

    Thank you for putting into words that I could never do, mostly in the is: 5. What advice would you give other loved ones of those living in chronic pain? When you wrote about how hard it is for your spouse to put things in order, you wrote: The chronic painer is typically fatigued and may have a “faulty” thought process because of the distraction of the pain, that hit me so hard because if it weren’t for my husband I could never get anything done. My life since the CDC”s Guidelines, is just getting by second by second, I can’t think of anything else. I HURT SO BAD, and to think that I don’t have to hurt to this degree because there are medications that could help me be part of the living, the CDC says NO, you don’t matter only the Drug addicts do! Let’s make the pain sufferers pay for it.

  13. Dave at 9:32 am

    HJ- were working on it. But everyone needs to pull their weight if they want change in our pain care system. For as the saying goes- If i am not for myself who will be for me and if i am only for myself who will be for me. And I agree with Steve= even contributing $5 can make a difference.
    I think government, deans of medical schools, researchers, insurers, health care providers all have sought to take a piece of the pain care pie and have made the concerns of individuals in pain very unwelcome. They have all claimed they are uniquely qualified to speak on behalf of the public good regarding pain care. So it is clear they have tried to silence, diminish,, detort, sublate, dominate, stomp on the voice of individuals in pain-so their invalidating ways discourage people in pain from speaking out about their care. There are no real and effective structures in society for people in pain to quickly have their concerns count for something and responded to. Sure you can contact medical boards and complain about yur pain care- but whose on those medical boards- doctors-and whose interest are they biased toward? Sure you can complain to your Governor or legislators- and again who contributes mostly to their campaigns and has lobbyists dresswed in brioni suits or wearing Prada and giving out season tickets to sport games- not Joe or Jane American. Sure you can complain to the hospital or clinic you get care from- and whose handling the complaint- medical staff. Sure you can complain to media- but dont they always like to go to an expert and not you on the issue. The iron cage of unresponive pain care was forged by powerful special interest groups who selfishly and undemocratically sought control over the individual. And so it takes considerable passion, time, effort, determination, commitment and support for the individual in pain to be heard. But it can be done- we have to hope and faith and idealism-and an understanding that if each of the 100 million in pain will do a little- that will add up to quite a lot. Once upon a time Blacks and women didnt have a right to vote- they stood up and now they have that right. Once upon a time work amounted to slave labor- the labor movement changed all that. Once upon a time we were subject to the British government- now that has changed. Its not up to government or professionals to secure individuals rights- its up to individuals- and if individuals in pain wont stand up for their rights- dont ask others to do it for you. Have the integreity to do something to stand up for better pain care. If $5 is too much send $3. Write or call the AMA-sure theyll laugh at your opinion- at first- but after a million phone calls they wont be laughing anymore. Its up to all of us to make better pain care a reality and dont wait till someone does what you think needs to be done.

  14. Linda at 9:32 am

    Wow,first of all I am so impressed with your ability to embrace your partner after she got ill. My partner split and honestly I can’t blame him,I am not the same person I was.Ive had chronic pain for 20 plus years since an auto accident and surgeries. It is torture having constant pain and I still can’t embrace the person I am now,ugh!
    I hate even trying to explain it to people so I just isolate and don’t make plans.The exhaustion bothers me so much, I know I really look lazy and I used to make lists and run until I got them done, now a days list of chores can take me months.
    I just finally got referred to a pain clinic and have learned so much,but the legal hassles and medical system (that I used to work for as a nurse) are daunting and in this day and age people shouldn’t have to suffer so.
    Kudos to people who advocate and support their loved ones dealing with pain and thank you for advocating for much needed changes in the system. I think a great many new developements are on the horizon, not in my lifetime but hopefully for the young people challenged with such debilitating illnesses.
    It’s about quality of life and the ability to function. Knowledge is power

  15. Mark Ibsen MD at 8:50 am

    Steve:
    It is delightful to hear why you are such a fierce advocate for the pain community.
    You have taught me so much,
    And
    Thereby affected pain care in the state of montana and beyond.
    I believe we are reaching a tipping point, our message is reaching a critical mass, thanks to your dogged persistence.
    I love seeing the precious dynamic of your relationship unfold.
    You a both heroes to me.

  16. Tim Mason at 8:36 am

    Very good insight indeed. As a 58 year old arthritic old man with some plates, screws and artificial joints, I would freely give financial support to such an effort. Even knowing at my advanced age I may never see change, there will be hope for future painers.
    Society had degraded. No one takes pride in achieving a goal. Education too has degraded.
    A weak education system has created a phobic lot of would be professionals. Ethics has gone out the window for fear of losing profits in pain medicine.
    No one can escape pain their entire life.
    Those without pain today, molding guidelines into rules will one day find themselves thinking “What the hell was I thinking”
    I like the slogan “Count me In”

  17. HJ at 5:24 am

    Wasn’t there a group that had been filing a lawsuit about the CDC guidelines? Where are they in that process? We do need central organization. We have organizations like the US Pain Foundation, to which I donate through Amazon Smile. If there was some central collection, I would donate.

    Could the US Pain Foundation start a war chest for us?!?

  18. Kris at 5:08 am

    Thank you fir all that you do for us Steve!