Chronic pain patients reach out to Patients Rising regularly. Invariably they tell us, they once had a better quality of life with their pain, but then (a relatively recent phenomenon) their pain treatments were changed and their quality of life plummeted.
Our hope is to be a part of the larger conversation about what to do when chronic pain patients lose access to treatments that give them a better quality of life. Our readers and empirical evidence tell us that such treatments are often opioid based. Though the danger of opioid addiction cannot be ignored, if we prohibited everything addictive in our society, we would have to wave goodbye to alcohol, nicotine, barbituates, social media, sex, gambling, shopping, video games, guns and many more things that have not had near the positive impact that opioids have.
WHAT IS A CHRONIC PAIN PATIENT TO DO?
Here are some of the common pieces of advice we have shared with chronic pain patients.
1. COMMUNICATE WITH YOUR PROVIDER
It is not uncommon for chronic pain patients to tell us that their provider has stopped or curtailed opioid treatments. Perhaps the provider applied forced tapering of the opioid medication. Maybe the pain management doctor retired and now the patient can’t find anyone to take their case. Sometimes patients are told by their providers that opioids are just completely off the table.
Any of those options might be fine if there were treatments that could step in and be equally effective. Most say there are not.
Tools to help with communication
You can communicate the impact changes in your pain treatment have caused by using the following tools made available by the American Chronic Pain Association:
- Daily Activity Checklist
- Preparing for your healthcare visit
- Pain diaries like the one made by the American Cancer Society are also very useful.
Documents like these help show your doctor that you are paying attention to your pain, and are willing to work with the provider to better understand your needs. Data is the cornerstone of how doctors think.
2. DON’T GET EMOTIONAL
Easier said than done. Talking about your quality of life when you are feeling helpless is an emotional thing. I’ve seen patients crumble into tears during appointments, probably because of the huge stakes at play. Fortunately, the New York Times has a really good article on how to hold back the tears.
Like any person, your doctor will take cues from you. If you want the visit to be about you being angry, or you being sad, then getting angry or sad would be appropriate. But if you are frustrated and emotionally raw, expressing those emotions will pull the conversation away from ‘How can we address your pain’ to ‘How can we stop you being upset’.
3. ASK ABOUT A PAIN CONTRACT
I know I just told you not to get emotional, but the concept of pain contracts get people upset. Why? Because you are essentially signing something saying you won’t lie, cheat or steal and that you’ll do as you’re told. It’s insulting; undignified. Still, pain contracts can be an important part of the arrangement you make with your doctor.
So, a pain contract basically says:
- the medication being given is safe, effective and helps you function
- the patient will try the other treatments the doctor recommends
- will keep appointments and take the medications as prescribed
- patients will use only one pharmacy and get meds from only that one provider
- the patient won’t ask for refills early
Here is a link to an example of a pain contract developed by the American Pain Society.
The best way to look at the pain contract is that it gives your doctor a sense of control and reassurance. They don’t really know you after all and to them, consequences can be great. The pain contract is a way to establish trust quickly.
4. WHEN ALL ELSE FAILS, FILE A COMPLAINT
This is last for a reason. It should be a last choice. Filing a complaint can get you a bad reputation as a patient. You may also have to justify your position to officials. Filing a complaint also does not get you what you need (treatment), it gets you a sense of justice. Justice is important, but it doesn’t alleviate pain. Still, we have to stand up for ourselves sometimes and this is a potent way to do so.
Three ways to file a complaint
- You can go to the Department of Health and Human Services to file a complaint about violation of civil rights.
- You can also go to the National Association of Insurance Commissioners to file a complaint.
- Medicare also allows you to file a complaint against a doctor, hospital or unsafe care or conditions.
As a patient, you may have rights under the Americans with Disabilities Act. According to the ADA.gov, “To be protected by the ADA, one must have a disability or have a relationship or association with an individual with a disability. An individual with a disability is defined by the ADA as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment. The ADA does not specifically name all of the impairments that are covered.” Note, this is different than the standard for ‘disability’ as defined by the Social Security Administration, which is more strict.
WORSE THAN THE DISEASE?
Jim Sliney Jr. is a Registered Medical Assistant and a Columbia University trained Writer/Editor. He creates 
education and advocacy materials for patient support groups. Jim has worked closely with several rare disease communities. He also collaborates with patient-writers at Patients Rising and leads their writing team. Jim is a native New Yorker where he lives with his wife and lots of cats. Twitter Email