For Letters by Chronic Pain Patients
Effects of Chronic Pain
Described by Doug Marsh of Chronic Pain Sufferer Rights Leadership Commission. Feel free to use any of these descriptions in your letters to Congress.
Chronic Pain touches us all in so many different ways.
Far too often after an illness or pain caused by an injury, we believe the treatment or therapy originally given to us has cured us. But then later on down the road the pain starts again, most of the time as a dull and periodic annoyance, just slightly more irritating than a common headache or another pain we might take an Aspirin for. As time progresses this inconvenience starts to become a more noticeable annoyance happening more and more frequently. To deal with this pain we start taking more and stronger over-the-counter pain relievers like Ibuprofen, Tylenol and Aleve to deal with this irritation or simply just to do our jobs, or even play with our children.
Eventually, the irritating pain starts becoming an interference effecting how we all do even simple tasks like making the bed or carrying out the garbage or even taking a walk. We start do things like favoring different parts of our bodies, posturing or carrying ourselves differently in an attempt to feel less pain. Most of the time we do not even realize that we are walking bent over or slouching while we are standing or sitting. All we know is that we don’t hurt as much at this time.
Next this interference caused by our pain starts to become a disruption, effecting our lives in various ways until one morning we wake up and can’t move without experiencing excruciating pain. We start missing work or backing out of social activities because we just don’t feel well enough to participate. We don’t know what’s happening to us—all we know is that the pain we are feeling has been getting worse every day.
Our employers start to become disappointed with our performance along with our work attendance and we can’t explain it to them. Now, every aspect of our lives has become difficult and our abilities and actions become more difficult and life itself is interrupted. What was once a reflex or a simple action now takes thought and planning to do because we want to avoid the pain every action now causes.
We want answers. We want an explanation other than “as we get older our aches and pains get worse”. So we seek the explanation by going to doctor after doctor to have tests done and seek relief. We subject ourselves to torture simply to find out what is causing our everyday pain. We are jabbed to the bone with needles that they then put an electrical current though in order to test our nervous systems. We are given steroid and epidural injections, spinal cord stimulator implants and other surgical procedures in an attempt to alleviate the pain and get our lives back to normal. Then, after all that fails we are prescribed everything from massive amounts of ibuprofen, gabapentin or Lyrica to opioid pain medications to manage our pain. But still no one can fix our ailments or injuries. Finally we succumb to our ailment or injury because we have come to the realization that pain now controls our lives.
For years we took pride in our jobs and worked as hard as possible to get raises and promotions. We always showed up to work, even sick at times because we had families to support. There is no way we will ever ask them to go without.
Then one day our pain starts causing us to miss work, or it starts effecting our job performance. Our paychecks start suffering and our medical bills start adding up. We have family medical leave (FMLA) and short term disability, but that starts running out after 90 days. So we beg our doctors to release us and attempt to return to work so we don’t lose our jobs.
What we find out is that these injections and surgical procedures that were supposed to alleviate our pain only succeeded in making it worse and we start having to go home early and calling off work once again. Then when our employers can no longer afford to carry us anymore, we lose our jobs.
So now we have lost our employer sponsored health insurance, our income, and our sense of self-worth. Our pain won’t allow us to work and we have to go to court and fight tooth and nail for what is rightfully ours. Our Social Security Disability that we have paid into for all the years we were in the workforce often takes years to get. So now we are disabled, have no income and no health insurance. Our medical bills are adding up, and we have spent through our savings nest eggs or cashed in our 402k retirement, but still we have to wait on the federal government for our SSDI and do back flips through hoops to get what is rightfully ours. We are both physically and financially broken at this time.
Because we are stubborn, we refuse to let pain slow us down. We stay positive and hopeful even though we are miserable. We force ourselves out of bed every day and go to work in agony. While at work, we put on our best, “I’m ok face and work through the pain but fight internally with ourselves daily on how much longer we can work.
We are gullible by believing and going through painful and expensive testing, along with surgical procedures that are supposed to make our lives great again.
We see the ads on television and we believe what pain doctors tell us about miracle surgeries and magical implants so we agree to it all.
We are embarrassed by being taken by these doctors who promise us a pain free future.
We start feeling helpless when we can’t work anymore because of our pain. Our desperation grows when we can’t earn the money to pay our bills.
We get depressed and we start feeling as if we are letting our families down.
We feel inadequate and irritated because we have to spend our life savings to put a dent in the medical bills. Then we feel anger at ourselves and depressed because we feel we are the cause of all the above.
Finally beaten by the pain, the financial and the emotional problems caused by our pain, we accept our future no matter what the outcome.
We are entirely broken now and totally unsure of our future.
Our bank accounts suffer and our relationships are stressed. Our lives are in complete turmoil and we are finding out that few really care.
Letters Submitted by Chronic Pain Patients
These may be used as a model to write your own.
Dear Senator McConnell,
I am a chronic pain patient, advocate, and writer. I understand the fears of growing heroin and other opioid pain abuse on the streets, and I believe there are ways to both treat the chronically pained and those afflicted by addiction. Just so that you can get a bit of background, I am a [X] year old woman with a graduate degree. I began developing major health issues after [describe what happened].
I have a hard time getting the help I need, even though I have insurance. Doctors don’t know much about my conditions, and ALL of them cause extreme pain, which I have yet to find a doctor willing to treat adequately. Some of my conditions include: CRPS/RSD, (a neurological disease, which is rated WORSE than child birth, amputation of a limb, and Cancer–but I cannot get the medications that I need because I do not have Cancer.) I also have [list diseases, if multiple]
It is scientifically proven that legitimate pain patients do not experience the feelings of euphoria that drug addicts do, and that they are highly unlikely to abuse or divert their medications, I have written you regarding this issue numerous times, only to receive form letters, and once a call from your intern. As someone who has done a significant amount of research on this topic, I feel that I could be of valuable resource to you and your team, when you consider laws which limit the care of patients like me.
Senator, when I (and the millions of other Americans who suffer from chronic illness and pain) go to the hospital, I am treated like a drug-addict, despite the fact that I have been tested by three different pain psychologists, all of whom declared that: “[Name] is not an addict, nor at risk for becoming one. She suffers from severe physical pain, which (even one of her conditions would warrant opioid pain medications). She suffers many conditions, uses her medications responsibly, as a part of an overall treatment plan, which includes yoga, chiropractics, massage, non-narcotic medications, and more,”
I represent millions of patients in similar conditions, some of whom are unable to obtain ANY pain medication, because of the increasing restrictions surrounding opioid pain medications,. Others receive inadequate care. In the land of the free, where we are supposed to have the right to Life, Liberty and the Pursuit of Happiness, millions of Americans are being denied this simple privilege, because when you live in chronic pain twenty-four hours a day, every day of your life and there are legal medications which can help you to live quality life, but you are denied them, you are now being treated as a second-class citizen by your own country. I receive emails, phone calls, etc., from at least ten to fifteen people a day who are on the verge of resorting to street drugs or suicide because their lives are no longer worth living. Please consider speaking with me and some other pain advocates, in order to attempt to help both pain patients and addicts to get the treatment they deserve.
Thank you for your time and consideration. I look forward to speaking further with you about the ways in which patient and lawmaker communication can help lawmakers to understand better how they can better serve their communities, and how we can come together to improve the lives of all citizens.
Delegate International Pain Foundation
Kentucky Pain Action Network
Here is a copy of a letter that can be modified to fit your needs and sent to your representatives:
(To whom it may concern)
Dear____ My name is Stacey ___ and I am writing this letter on behalf of myself and the countless others I am connected with who also suffer from Chronic Pancreatitis (ChP). According to Dr. David Whitcomb from the University of PA, Chronic pancreatitis is more painful than cancer, diabetes, and most other chronic illnesses. I have suffered from this disease due to gallstones for 14 years and I can attest to the debilitating level of pain it incurs. But more than just pain, ChP affects other organs sharing nerves with the heart and a blood supply with the spleen.
Anytime we have a flare it can mean death for those of us who suffer with pancreatitis. We also suffer with mal-nutrition, PTSD and many have other conditions like GERD, diabetes, etc as well.
There is no curative treatment for pancreatitis other than transplant surgery which is not covered by most insurance companies. Controlling the symptoms is the only way to have ANY quality of life I no longer have the pain relief needed to allow me to function even in the most minimal part time job. every day,. I am actively being harmed by the unscientific and biased treatment standards being forced on my doctors, insurance companies and pharmacies by both the federal and state levels of government. I want to live a productive life despite the challenge of a very painful disease. However, my quality of life has been taken away from me due to government overreach. The current “opioid epidemic” has been vastly mischaracterized and misdirected in the dominant public narrative.
The federal government, in deciding to stop people from becoming addicted to opioids, has chosen to make it extremely difficult for people with chronic pain conditions to continue getting the very medications that make life tolerable and worth living. There are many politicians and government departments who have made our lives miserable. For example, the CDC has written opioid treatment guidelines which are now known to be fraudulent. (Cite?) The guidelines were based on “research” that was deliberately biased to over-emphasize the real risks of treating chronic pain with opioids (Cite?). Thus, it denied the reality that opioids are currently the MOST effective means of safely and reliably treating millions of people who would otherwise be totally disabled by pain.
The guidelines are also being enshrined in highly restrictive state laws with a record of malicious and unwarranted prosecution of doctors by the DEA. (Cite) The DEA has completely ruined the “doctor-patient relationship” that I used to receive in treating my painful disease. Now doctors fear for their licenses instead of caring for patients. The FDA and Dept. of Health & Human Services have also become involved in this travesty. There are legislators and lobbyists that have become involved as well, and all of them are directly responsible for denial of effective pain management to tens of thousands of patients. Chronic pain patients are being involuntary denied medications that have been effective and safe for them for decades. They face reluctant doctors, wary pharmacists and insurance companies, and the frequent demand to prove that they are not addicts.
Suicides due to overwhelming pain have already happened and more are anticipated. (Give examples) It is not fair to punish one group of society in an effort to improve another group that chooses to abuse the medications we need to live our lives in a productive way. Our lives literally depend on these medications to function. All of this has also caused undue financial stress on an already stressful situation which intensifies our symptoms. My last Urine Analysis was $1500.00, twice a year makes it $3000.00 more on top of an already tight budget. It is $220.00 every time I walk into my pain specialist office. In addition, now my state wants to make us get our medications filled every 7 days which again places undue financial burden upon my family as well as stress on my already weary body. We are not criminals, we are only seeking relief from severe pain.
It is my plea that you do everything possible to stop the war against chronic pain patients immediately. The only ethically and medically sound way forward is immediate withdrawal of the CDC guidelines. They then need to be immediately replaced by better qualified stakeholder groups including both pain management specialists and chronic pain patients. The DEA should also be required by Congress to cease prosecution of doctors whose only “crime” is an attempt to serve the medical needs of their patients.
I have been advocating for and supporting those with chronic pain for 10 years and it is my conviction that those who have no experience suffering from debilitating pain have no right legislate pain management restrictions. Because for us, it is not about getting high, it is about getting by.
Unless you actually have a disease or injury that causes you chronic, debilitating pain, you do not have any right to legislate for chronic pain patients, because for us, it’s not about getting high, it’s about getting by.