Take a Survey on Your Treatment of Chronic Pain

Take a Survey on Your Treatment of Chronic Pain

By Ed Coghlan

Since we started the National Pain Report, one topic that we have tried to consistently explore is the quantity and quality of care that chronic pain patients received. As many of our writers and commentators have written over the years, this is a health care system story—and it’s a system that often fails the patient.

Chronic illness is hard to treat. For chronic pain sufferers (or Warriors as some prefer), an unexpected flare-up of one’s CRPS, fibromyalgia, or preexisting chronic pain can quickly become an unbearable situation. A flare-up or breakthrough pain is defined as a transitory exacerbation of pain that occurs on a background of otherwise stable persistent pain.

Jim Broatch, who is Executive Vice President and Director of RSDSA, has been promoting a survey that explores what happens to you when you have a flare-up. RSDSA wants to better help individuals who are experiencing a pain flare-up or breakthrough pain (BTP).

Here’s the survey. Please take it.

(Click here)

We will follow-up with Broatch and his team to see what you are saying—and how that might start a new conversation about how chronic pain is treated.

Part of what the survey explores is the experience that pain patients have in the emergency room. We explored that topic three years ago when Broatch and Louisiana physician Dr. Billy Alexander were working to educate the American College of Emergency Physicians about CRPS. Alexander is a former ER doctor who has become a leading voice in CRPS awareness since his college age daughter, an athlete, was injured and developed CRPS.

Here’s one of those stories from 2015. You can judge how much progress is being made and importantly can contribute to efforts to better pain treatment by taking the survey.

After you’ve taken the survey, feel free to leave a comment about your own personal experiences and how they were either positive or could have been better.

Thank you.

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Authored by: Ed Coghlan

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Renee

I was fairly interested in what what this site offers sufferers of chronic pain & their loved ones, and may return. However, I need to share my experience in hope that the issue is addressed and others will not be too discouraged to keep coming back.

I became very interested in filling out the survey about experiences with appropriate pain relief options when seeking compassion and relief. When I clicked on the link to the survey, the page that’s intended to ensure I’m not a robot, I was forced to repeat the process several times. AFTER finally proving I’m human, guess what??!! My reward to wasted time & goal to advocate compassionate treatment for those suffering, was immediately dashed as I was only met with the news that the survey was no longer available. This can’t be that difficult of a situation to address.

Marsha A. Rodriguez

I was to late to take the survey however it’s been a total nightmare with the opioid hype. It’s beyond cruel, demeaning, barbaric to make innocent chronic pain people suffer over the untrue “we are all addicts” that has been throw at us for no factual reason. It’s caused a phenomenon in the United States that we all just want to get high on opioids. I’d like to see a survey for chronic pain sufferers who ever got high on any pain med prescribed to them. We are not getting high we are just trying to live our lives without debilitating pain like non pain suffers do. My Dr told me from day ONE “that it’s totally natural that taking pain meds will cause an addiction physically but unlike opioid addicts pain patients do not abuse their medication”. How could we? We are given a limited supply that must last for 30 days. Now even if your pain meds are stolen, lost, etc you cannot get a refill even with a police report. I never carry mine with me unless I’m going to be away for 1 or more nights and then I’m a nervous wreck worrying that something might happen!

Brett Husebye

I was in the ER because I have been through withdrawl twice on my own accord and I was not feeling well. My doctor’s office is strict and if we miss an appointment it is tough crap until the next one. I realize they have a business to run but he was out for 2 weeks and I was becomming uncomfortable with the loss of my daily Methadone and Oxy. Not only that withdrawl is bad for the heart with this med. I was screamed at by his Red Haired witch of an office Manager, I think she was fired or is being hid, which is good because her customer service skills suck and I have only seen her once since. Anyways she yelled at me for not having an appointment. I forgot to get a card because I was having trouble with the last piss test I had, my Fibromyalgia causes bladder issues. So I ended up without my meds and like I said I had been through withdrawls twice before, once just so he could switch me to Methadone like I asked him to because I read it is better for Fibro pain. I was in the ER and had my bloodpressure and temp taken, entry info ect, my blood pressure spikes when I am in pain. A doctor came up and did not know what to do with me. So he calls the head ER guy. This was in 2016. So at Henry Ford on 19 and Garfield in Clinton Township, the head of the ER refuses to treat me because he said he could lose his license treating someone with Methadone. I fill the prescriptions in the SAME hospital. This guy was being smug and snarky, asked me: “So how did you think this night was going to go?” With a smirk on his face he said he would give me a few Norco and turn me lose. I pulled everything off me, put on my coat and walked past him. He was surprised that I did not take his prescription. I still had to pay the hospital bill because they were screwing up my credit over a 120 dollar bill. They said it was too long for my complaint a few years ago and I had to pay the bill no matter what. I even sent in the questionaire on him and made sure it was negative. No doubt no one read it nor cared. If I go to the ER I expect Treatment. Not only that the doctor was WRONG. Any doctor can write a prescription for Methadone for pain in Michigan without threat to his license. He cannot treat an addict without a special license. So yes I believe more people need training in what pain management is and how to handle us in all situations instead of constantly telling us tough [edit] you look like a drug seeker, addict, problem so on and so forth.

Enola Crayton

I do think that the suicide rate will rise (in our chronic pain community) because we cannot get adequate care for our pain. Many days I am so depressed because of the pain.

D'Ann Jacobs

What as been the greatest help and miracle for me is cultivating my relationship with the greatest physician ever. That being Jesus Christ. He has healed me and when winter comes unexpectedly in February in Arizona she comforts me and provides healing. I don’t relay on physician on earth too much anymore just a bit as I am learning to trust Jesus with my entire life. He is coming soon. God Bless All. May you all have a low pain day.

sandy auriene sullivan

Took the survey. Thank you! As one can see from comments on article after article; we are a group struggling to make it as individuals.

Nancy

I have to agree with the comments below. Since the CDC Guidelines have come out, chronic pain patients have to beg for
treatment.
They are treated like a criminal. It is very scary. Tonight I just read about a bill that Rob Portman, Ohio Senator, is proposing that is even more restrictive than the CDC Guidelines. Things are getting worse. Where are the advocates for Chronic Pain Patients? Things are getting worse and worse. Chronic Pain patients are not the abusers and they are suffering. I feel like the government is taking over. This whole issue is so one sided it is unbelievable. The doctors are just throwing up their hands. They are so afraid that they will lose their license, they are just refusing to provide treatment.

Took the limited Survey. Treatment for chronic pain has become a fight for patients, if you are able to get at all. I am in Chicago area, NO REAL ADVOCACY OR ORGANIZATION IS STEPPING UP> it’s politically incorrect, most non for profits are not going to do anything that might cost them funding.

Rebecca Morgan Estock

My medications have been stopped. I was given 5mg of methadone for pain. I was told my Dr was killing me.
I have no relief. Having ubcontrolled diahrea, bladder loss, kidney infection, bloid in urine, ulcerative colitis that flared when meds stopped. Nerve pain, edema right arm
Leg has gone numb,sciatic spasms,neck is on fire,jaw shoulder,I’ve s reamed when urinating.PM said iam not permitted to go to er.
My kidneys are flamed I keep taking Tylenol.,
I hope I will pass out and I wake safe in a hospital and I can contact my atty about PM
This is a nightmare.

Steven Smith

Thank you for your article but the timing is about 5 years late. Back then we saw a doctor’s once a year and got her medication in the mail every 3 months. Now we see our doctor every 28 days and we’re lucky to get even enough to sustain life let alone enjoy life. At this point with the latest FDA reduction to 100 m m e for most doctors and 200m Emmy for some. I fear for my life. They’re not interested in symptoms or the degeneration of your condition. In other words you’re getting worse as they are lessening the medication. I won’t be here to see it but next year at this time I fully expect everyone to be taking aspirin and that’s it! Medical treatment is a thing of the past. Any chronic pain patient knows this to be true.

Kathy C

These “Surveys” are why we don’t have a coherent message. CRPS and Ketamine in one “Message.” We do need more research on Ketamine and CRPS, but many practitioners are unaware of Ketamine research. The distinction between CRPS and any other painful condition is not made in Emergency Rooms. These “Spreading Awareness” Campaigns are not working. ER Physician are under a lot of constraints, and recognizing CRPS which does not lead to immediate death is not their concern. Their only concern is the Hospital bottom line. Hospital Administration have already done a Cost Benefit Analysis, and put suspicion of any pain condition as the utmost importance. ER Physicians are under the constraint of the Corporation they work for and there is no immediate financial incentive for them to recognize any pain condition. They could even face penalties for acknowledging pain. In the world of Corporate Healthcare, it is better to ignore and deny than pay attention to patients.

Terry

I have never received any kind of compassion or sympothy from my pain doctor even once. He always made a point to tell me that I am taking a lot of medication, which filled me with anxiety two days prior to and up to my appointment, it was a kind of he’ll thinking that he was going to cut my meds back. He NEVER listened to my complaints of what was causing me pain, which is basically my entire body. He only ever asked me about my back and always kept pushing his back procedures on me, I had five procedures with no improvement. Now with the opioid epidemic all he does is have his PA cut my meds way back. I have a high pain tolerance generally but without the proper amount of pain meds my situation is unbareble. I still have people who depend on me and it’s killing me trying to keep up, some days I just want to crawl in a hole and die. It is really just too much to handle and my doc is going to take me down from 195 mg of oxycodone per day to 90 mg, barely makes a dent. I also happen to be a rapid metabolizer, which means I need twice as much medication and it lasts half the time as normal people, it’s an enzyme in my liver that causes it. I don’t know what I am going to do, I feel lost and nobody can help me. What’s to come of us?

Paul

Is this serious? Since the CDC guidelines, we are lucky if chronic pain is treated – forget completely about breakthrough pain getting treated if you have chronic pain!

Kathleen Kempken

Thank you for sharing the survery.

Stephanie Scarbrough

Thank you for thinking of this issue that so many of us encounter!