Opiates for pain relief: what patients have to say

Recently, there have been many discussions centered around opioids and other pain medication. This ranges from the speculation that opioids are a gateway to heroin addiction to the overprescription of these drugs. As a former Oregonian, it saddened me to see Senator Ron Wyden embrace the CDC prescription standards for opiates. These guidelines do a world of harm to chronic pain patients.

There is no denying that there are people for whom these medications are bad news. The costs to employers specifically can be astronomical. Heroin use rates among younger people are on the decline, so who are primary abusers and users? Middle aged white people.

If you become addicted to opioids, you *may* be more likely to move to illicit drugs.

What about those of us who need to utilize these pain medications for relief? Those of us who can stay on a consistent dose without increasing, as those with addiction issues often do? We are often labeled as ‘dependent’ but that’s only due to the positive impact made on our lives due to these medications, that we do rely on them to be able to function, but that’s not the same way an addiction presents.

According to the National Safety Council, “Studies have shown NSAIDs are just as strong as the opioids.” However, some the information cited involves combining multiple NSAID types – something that most of us in chronic pain are told NEVER to do in order to protect a liver that already works incredibly hard to process other medications. Also, the FDA may not believe the benefits of those outweigh the risk either.

As someone who constantly takes NSAIDs, I can certainly say that they do not provide the same level of relief to chronic pain patients. I’ve been taking NSAIDs since age 7 due to my Systemic Juvenile Idiopathic Arthritis. I’ve had to switch NSAIDs a few times due to them losing effectiveness and harming my GI system.

As my friend Mariah points out, better care has led to an increase in opioid prescriptions. She discusses a session at the American College of Rheumatology 2015 Conference where two physicians discussed the use of opioids for chronic pain not related to cancer. One physician remained staunchly against the prescription of opioids for chronic pain patients while the other believed in using them depending on the patient, as refusing them can deny patients the pain relief they so desperately need.

Many questions come up during this piece for me. Why is chronic pain unrelated to cancer being compared to that related to cancer?

With opioids, my friends with rheumatic illnesses can move around enough to keep pain at bay, sleep at night in order to work a normal 9-5, or spend time enriching the lives of their children instead of sitting in pain.

I asked some of the patients I know to share a bit about their journeys with pain medications:

One patient in Texas said:

My Dr said that she wants to physically see me each month to get my script. I don’t have insurance and can’t afford to do that each month. Our free clinic won’t write for them either… Our health care system sucks! Not sure what I can do though.

Another in Texas:

I couldn’t function without them. My GP prescribes them. My old rheum would drug test if you wanted him to prescribe. Well, I also smoke marijuana and that would have me booted from the practice altogether. I get them where I can bypass that.

Yet another patient in Texas:

If I didn’t have spousal support/alimony, I wouldn’t be able to afford seeing a pain specialist. It’s so freaking expensive!

A patient in the New York area:

I have only ever been prescribed opiods in the ER or by a GP in a flare. I love my rheum but he doesn’t do pain management of controlled substances because of the current laws and how much more difficult it will make his practice and how many fewer patients he would have because of the increased visit frequency required.

One pt in South Carolina:

I’m on Diluadid 2mg twice a day. It managed my chronic arthritic pain extremely well at first, but all it does now is make me sleepy. Does it manage my pain? Yes and no. When I’m flaring there is NOTHING that makes my pain go away. Not even high dose pain meds given by IV in the hospital. Nothing. That’s the way my arthritis is. Intractable. So every thirty days I pick up my prescription for a 30-day supply and muddle through another month of trying to manage my pain without really managing my pain!

Me?

Opiates tend to not work well for me because of my allergies, frankly. I can’t do Tylenol at all, so hydrocodone on its own is what I can take – Zohydro. It’s strong stuff and, frankly, I reserve it for the worst pain I have. There are types of pain that doesn’t fully touch for me, like the bursitis I had this time last year that required a few bursal injections.

Still, it took care of the pain associated with limping and favoring one leg over the other. It allowed me enough of a break to be able to sleep some – even on high doses of prednisone. I was treated like a drug addict and criminal picking them up from Walgreens, but at least they didn’t turn me away.

For that, I am grateful.

I take Lyrica, another controlled substance, daily. Before I started on that, my fibromyalgia was so bad that I was missing 1-2 days of work within a two week period. My allodynia was so bad that I couldn’t wear clothing – all I could wear was my fleece zebra blanket.

Unfortunately, that is not proper work attire, save for when I’m blogging.

Now that I’m on a good Lyrica dose, I do okay. Currently, I’m in a fibro flare and have missed four days of work in a month’s time due to it, but before that I was doing pretty well.

Without my Lyrica, I’d be unable to work.

I also wouldn’t be able to get the physical contact I so love from my husband.

Other young people I’ve spoken with have shared how they are often forced into signing contracts, jumping through ridiculous hoops to get any semblance of pain relief. We’re sent to pain management clinics where we’re told the solution to our pain is to lose weight, exercise, stop eating poor food, and think positively. We come to fear those visits, to fear the times we have to utilize the emergency room due to overwhelming pain.

This leads to increased pain and mental anguish as well as costing the healthcare systems more in the long run. When we chronic pain patients disregard our own pain, it can lead to hospitalizations, surgeries, and worse.

Chronic pain patients are often female. Due to our gender, we are not believed about pain as it is. We need to examine, as well, the way we approach racial issues and pain relief… and poverty, too.

Do you want to know why we may seem desperate?

We’ve seen our (former) primary physician who laughed an abscess off as a pimple, wanted us to keep taking our immune-system-suppressing medications, and told us to grow up.

We’ve researched pain and learned about how negatively it impacts all aspects of our lives, from interpersonal relationships to even how intelligent we are.

We’ve been interviewed and had people belittle us about our pain relief.

Since there is no way to know who will become addicted, shouldn’t the focus be on supporting social services that help to check on people living with chronic pain who are on these medications? Shouldn’t we be embracing conversation starters like the recent Super Bowl commercial about Opioid-Induced Constipation instead of making poop jokes & assuming everyone on pain medications is an addict? Should health activists be taking over important areas in other healthcare issues to try to make a point to the Bill Mahers of the world? (Hint: no).

Approximately less than 9% of people who have a substance abuse problem abuse opioids. Some of them are even physicians. What about them? Do they not also deserve pain relief? Our respect, love, and help instead of being vilified?

So many good points in this post. It seems to be a universal problem for people in pain, that we can't get the right treatment for fear we may be addicts. Yet somehow the addicts still get what they need, and its the sick people who suffer.

As a recovering heroin addict and an arthritis sufferer I can honestly relate to all of the points that you are trying to show here.
I would certainly never say that people should never take opiate based painkillers, they help so many. But personally for me, they are something I struggle with

Yes I've suffered almost all my life with pain and was not taken seriously until age 40. I'm finally get some real treatment. Sad that I had to live most of my life in pain before someone took it seriously.

I am sorry to hear about your struggle. It cannot be an easy thing to deal with both of those at the same time.

It is incredibly sad. I have been in a similar boat, though it only took me into my mid-20's to find some relief. None of us should have to wait for relief. I am so glad that you are getting treatment *hugs*

It is such a difficult balance to achieve. I think the real thing that's needed instead of criminalizing patients seeking pain relief is to increase the amount of support people receive for their illness, whether those are physical or mental. With the right support and pain relief, people are less likely to turn to more dangerous options.

Great and timely post. I just returned from the Canadian Rheumatology Association Annual Conference and they had an interesting debate on the use of medical cannabis and chronic pain. If the side-effects are within the same levels as opioids why are they so reluctant to prescribe it? This is also a hot topic, so it was refreshing reading your blog.

Opiates for pain relief: what patients have to say

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