Don’t Punish Pain

By Jorie

The opioid crisis is bigger than ever, and as a result the government has stepped in to try to correct it. But their methodology isn’t exactly the most helpful for those of us living in chronic pain.

The Don’t Punish Pain Rally seeks to raise awareness of this issue. Patients and advocates from all across the US will be rallying on Saturday, April 7th. Every state except Hawaii and Alaska are holding rallies and there’s still plenty of time for you to get involved before this Saturday!

You can learn more about the rally in the Facebook group, where the leaders for each state are keeping everyone updated.

So what’s the overall mission of the DPP Rally? Well, there are several factors that drove patients and advocates to finally say, “enough is enough.

Primarily, the new CDC guidelines have made it nearly impossible for doctors to adequately treat their patients’ pain. According to the DPP’s Facebook page, “the CDC have implemented over-corrected guidelines that have forced many primary care physicians, as well as pain management centers, to stop or halt treatment of this community.”

You may be wondering: How important are opioids to the chronic pain community? Why is this such a big deal?

We talked to a few people who live with chronic pain and use opioids and asked them to tell us why this rally is important in their eyes. We wanted to get a personal view of how the opioid crisis is affecting others and tell their stories, raw and honest.

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Esther:

“My name is Esther, I’m 23, and live in Dallas, Texas. I’m in my 10th year of having 24/7 chronic pain. I’ve been diagnosed with CRPS, EDS Type 3, POTS, Vulvodynia, Vulvarvestibulitis, PFD, GERD, EOE, CSS, IBS, depression, chronic nausea, and chronic nerve pain.

I have to depend on opioids and other pain meds to be able to get through the day and manage my pain levels. After being bed bound for much of last year I’m finally getting back on my feet thanks to my current treatments–mainly ketamine infusions. Without them I wouldn’t be alive. At the very best I would be entirely bed bound, insanely depressed and suicidal. It would be no life at all.

This Saturday, I intend to go to the DPP rally to stand up for my rights as a patient as well as the rights of every human being who suffers in pain because the world has forsaken them and hurt them by stripping them of their pain medications. This subject isn’t just about the quality of life, it’s also a life or death situation for many people, including myself!

The world has proven time and time again that they will not fight for us so it’s time we stand up and fight for our rights!”

A. (wishes to remain anonymous):

“Keeping opioid medicines available to responsible users who need it is important. I don’t want to be identified; I’ve had enough of the stigma. But I’ve been dealing with chronic pain from hEDS, fibromyalgia, pelvic severe menstrual pain, and recently, spine surgery. Percocet works on days when other treatments don’t. For people like me, opioids improve productivity and life quality.”

Wanda:

“Once upon a time, my pain levels were fairly well controlled. I was able to work, to do things with my daughters, to be active in my community, and to live a fairly normal lifestyle.

All that ended about 17 years ago with the “crack down” on narcotic medications. Please note I said medications and not drugs. People who NEED the medication to carry on some semblance of a normal life no longer have access to them because of those who abuse the medications and turn them in to drugs.

There is a huge difference. I was on two narcotic medications, as well as a muscle relaxer that is now only available in the hospital. The “crack down” meant, for me personally, a complete change in lifestyle. Not only were my pain levels off the chart, I had to give up my job in the city and retrain for a local job. I wasn’t able to be as active in the community or able to keep our home up to my OCD standards.

Never once was addiction a concern for me (I was always able to stop taking the medications with no adverse reactions), my medications were not abused or sold or shared with others, and yet I was the one whose life was drastically altered because of people who chose to turn my maintenance medications in to drugs for recreational use. Because of those who abused narcotics, my life was forever altered.”

 —

Jeannette:

“People should have access to all legal options. And priority should be given to funding for finding new and improved treatments too. What works for one may be different for what works for someone else. It may be an opioid or a complementary therapy. There needs to be better coverage for them too. I’ve found the combination of approaches works best for me.”

Laura:

“When you’re in pain, you’ll do anything to make it stop. As a migraine warrior this means options as simple as heat/ice or when the pain becomes unbearable — opioids.

In my treatment plan, opioids are a last resort. They are a solution when the heat, ice, sleep, supplements and other medications have failed in reducing my pain to a point where rest and healing are achievable. Having the option to use an opioid is crucial to chronic pain living but one that must be managed responsibly.

That being said, it’s hurtful to walk into an ER and immediately be told by your doctor, “I will not give you narcotics.” Each and every case of chronic pain needs to be addressed on a personalized basis. There is no one size fits all protocol nor should there be. When I talk a doctor about pain management, I want ALL options to be on the table. This is where the conversation happens. Opioids should be a part of this discussion because they are a legitimate treatment.

Pain is REAL and needs to be addressed as so. Yes, opioids can be a “quick fix”, but sometimes that immediate reduction in pain is what a person needs to let their body and mind find other options for long-term relief.”

Jorie:

“As someone with several chronic pain conditions, opioids are essential to my pain management care. The conditions for which I use opioids are chronic migraine, rheumatoid arthritis, Ehlers Danlos Syndrome, and fibromyalgia.

My initial use of opioids was a gradual one, slowly inching into needing them more and more often. While I don’t take my opioids all the time, they do give me a sense of security so that when I do need more pain relief, I can rest assured that my pain will mostly be alleviated.

Since the opioid crisis has skyrocketed, I actually have to hoard my medication. I have to weigh my options: is this level of pain worth the Percocet I am about to take, or can I ride it out with a Tylenol or ibuprofen? I even use muscle relaxers as substitutes often because I am terrified of running out of my pain medication. Because of the opioid epidemic’s impact on my access to treatment, I’d rather be knocked out than given pain relief. That is NOT okay.

This situation should NOT be happening. My experience is just another notch on the totem pole, another patient ignored, told she can’t be helped, and denied treatment. I know I’m not alone. But because of this, I’ve had to learn to deal with my pain, to suck it up.

Taking opioids away from chronic pain patients is truly damaging both physically and mentally. Those of us who require a means of pain management 24/7/365 often rely on opioids as their quality of life. Ripping that quality of life away from us is, simply put, inhumane.”


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