Opioids: The Friend or Foe Debate

I just got my tail feathers ruffled from reading a pain specialist doctor say she wouldn’t prescribe opioids to Fibromyalgia patients. It is on cirpd.org (following a webinar she led). She says that she thinks it is not safe to prescribe opioids to Fibro patients.

Q. What about conditions in which there is no clear cause, such as Fibromyalgia.  In your opinion, is long term opiate use appropriate in these cases?
A. I don’t think so. Most patients with fibromyalgia also have depression and sleep problems, which will put them at higher risk of addiction and overdose. I don’t think it is safe to put patients on opioids when they have fibromyalgia. I would choose other medications. (source)

Pills

This kind of talk scares the hell out of me! What?! A doctor who would refuse someone pain relief simply because they consider them at a higher risk of addiction and overdose? Bull-hookey! Is this why so many Fibro patients are suffering in silence (like me) because we don’t dare buck the system in case it’s all taken away? Or worse, we’re suffering in the dark, silenced because we don’t deserve pain relief. We malingerers and hypochondriacs who are only a burden on society  – according to whatever doctor dinosaur we have the misfortune of being saddled with. I’m not saying Dr. Furlan is this type of doctor.

Many Fibro patients cannot tolerate most pain medication. We’re severely sensitive to so many things, medication included. This means that often-times the recommended Cymbalta and Lyrica don’t work, or cannot be tolerated. So then what’s left? Opioids.

I’ve been on Nucynta 250mg x2/day for well over a year now. I read that this pain specialist doctor doesn’t “believe in” opioids for Fibro because we have a higher addiction risk. I’m telling you, without this pain relief, I may as well be dead. That’s right, I cannot imagine being without pain relief medication, aka opioids. It took my doctor and I nearly this long to find out what kind of pain medication would work for me, at all. Nucynta is what works for me, most of the time.

Even so, I still take Cymbalta 60mg/day and Lyrica 150mg x2 day – it is what Canadian Fibromyalgia “specialists” still recommend for treatment. Yet after all of this, it’s still not enough to keep me comfortable throughout the day. I often sit here breathing oh so shallowly, on purpose, because the simple act of breathing hurts. Sometimes I can’t even brush my hair, because my HAIR hurts. I spend a great deal of  my day bed bound because I can only sit so long. Or because I’m just that fatigued that I can’t keep my eyes open.

Yet I do not over medicate. What’s the point? I’ve respectfully listened to my doctor and followed her advice and suggestions since we started out on this journey. Why stop now? Even if she left me in the lurch and moved out of Province :(

I am unable to work, I am housebound and cannot walk very far. I am nearly to the point where I will have to admit to needing a care worker to help me  a few days a week. Such is life, if I could AFFORD other treatments and options, perhaps I wouldn’t need the opioids. Without any other options, prescription pain medication is all I have to work with.

I cannot comprehend how any doctor could refuse anyone pain relief medication. Whether they “believe” in Fibro or are just overly paranoid (or ignorant) about opioid addiction. Am I at risk? I think not. I have had chronic pain for over 15 years. Diagnosed with Fibro, severe costochondritis and arthritis in my chest 2 yrs ago. This is the source of my pain and I *cannot* imagine functioning without Nucynta CR. I’m also curious what my dosage of Nucynta is equivalent to compared to Morphine or Oxycodone (which didn’t work for me and only made me extremely nauseous). But I digress.

I am constantly shocked, disgusted and outraged at how many doctors seem to know so little about chronic pain and/or Fibromyalgia. Worse, they outright refuse patients with chronic pain in their practice or refuse to prescribe pain relief medication their patients *deserve*. All because they are too chicken to put their neck on the line because of the stigma of opioid abuse. A doctor saying they don’t believe in pain medication is like saying their diabetic patient doesn’t really need insulin shots. It’s beyond my comprehension.

The media is in a feeding frenzy over opioid abuse. Perhaps rightly so. Yet it’s totally screwing those of us who have no other options beyond pain medication. Or if all other options  have failed, all that is left is the medication. Sure, I’d do acupuncture, message therapy, or even steroid shots (my very LAST choice) if it were remotely affordable. Hell, I’ve always felt it was so horribly ironic that my quality of life could very well be improved enough to return to work if only these things were available to me. Since I cannot work, we’ve lost my income and have a hard time making rent every month now. Let alone have “extra” money for alternative options or treatments.

I’ve been on an opioid of some kind for over 2 years now. I am very rarely comfortable pain-wise. Yes, I have severe sleep issues, sleep apnea (not drug induced, 100% CPAP compliant), and regular phases of insomnia. I frequently have pain flares. I am not a drug addict. Nor do I expect to become addicted. My old family GP educated me early on that a chronic pain patient takes pain for pain relief, not leisure. That I have to choose how much pain I feel I can tolerate – at the lowest possible dose of pain medication. This is where I’m still at 2 years after diagnosis. I am at constant personal dilemma on how much pain is “fair” to have. My doctor told me not to expect to ever be pain free.

So be it. I’m not happy, no, but who would be with such a dramatic life change forced upon them?

I’m not suicidal. I am not I a drug addict. I am, however, a chronic pain patient who deserves pain relief made available to me.

I am also without a doctor now that my family physician of 7 years moved out of Province last month. I am terrified that whatever doctor I can manage to find that IS taking new patients and that will accept a chronic pain patient, will force me off the opioids because they don’t believe in them, or don’t believe in Fibromyalgia. Terrified I’ll get saddled with one of those dinosaur doctors, or a newbie-ish doctor who knows “better” than to prescribe opioids to a chronic pain patient *boggle*.

Here’s a heartfelt, sarcastically sincere “thank you” from me to you, the media feeding frenzy type, who would rather see country-wide stats improve on opioid abuse by refusing or severely limiting anyone access, than think to seriously look at and treat the epidemic-like number of chronic pain sufferers in North America. A person with chronic pain *deserves* pain relief and as much support as they can get from the medical community. Right now, I’m feeling that the Ontario/Canadian health care system is drastically failing me as a chronic pain patient. I don’t see it changing for the better any time soon.

Do you?

P.S. Dr. Furlan, if you are reading this, perhaps you can recommend a good family doctor in the Durham Region (Toronto) who is knowledgeable about chronic pain and Fibromyalgia. Who is taking new patients, of course. That would be so very helpful! Walk-in clinics do not, or will not, prescribe narcotics.

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Comments

  1. Ella Preuninger says:

    I spent three years of my life in bed and then I found a Pain Dr. I moved house and now I make a 500 mile round trip each month to see him. I Take Oxycodone, Methadone and Soma. I live a quasi-normal life (I can walk again), and to sleep I take valium and Benadryl. I don’t care what anyone thinks I am better than I have been in the twenty odd years since I was stricken with Fibro. I believe that any “doctor” who would refuse to help someone in this prison of pain should be made to live with it for one month. I thank the Goddess each day for my Dr. and bless him endlessly. I wish you all of the best. Blessings, The Lady Ella

    • Thanks for stopping by and leaving a comment Lady Ella <3

      I think that any doctor who refuses a chronic pain patient pain relieving medication should be sued for negligence. Alas, many of us who suffer so much don't have the energy or the will to either stand up to their doctors, find a new one, or crow loudly to their local politician about how unfairly those with chronic pain/illness are treated by health care professionals.

      Yes! Wouldn't it be fantastic if we could truly share our pain, what is is like *exactly* with our doctors, friends or family. Only then could they truly appreciate what we go through.

      Light and love to you Lady Ella

  2. I don’t understand this doctor. Why don’t we have the right to pain relief just like any other type of patient. If you went in for surgery they don’t refuse you morphine or anistetic because it might addict you. NO in fact they WANT you to take it so you will heal faster. ( this is Kat btw shannon) I take 4 Vicodin a day sometimes 6 plus a cocktail of
    anti depressants to manage pain and mood at the same time. I could live without it but for the fact I NEED to function. I don’t get to take cymbalta or the other new medications because they aren’t on the VA formulary yet! UGH!!!

    I don’t take my meds recreationally, I Don’t get stoned on them, I get pain relief isn’t that what they are for?

    • Yep yep! We deserve whatever pain relief we can get! If only we could somehow “share” the pain we experience with the Powers That Be who make the laws and rules. That and share it with our doctors, so they can truly comprehend what it is like.

      I miss my doctor so much. She really got it. She went out of her way to help me get on meds that could give me as much relief as possible. All the while she respected and shared my concerns with addiction and how hard it may be to get off certain meds when (IF) it became possible I didn’t need them anymore. I so hope I can find another doctor with as much care and genuine interest in my well being.

      Light and love to you Brandi (Kat!). I hope you too have a pain free as possible holiday full of calm, peace and joy. *gentle hugs*

  3. Well, how about this contradiction. I have a pain management specialist who specifically does NOT “believe” in fibromyalgia. However, he is very willing to keep me on my opioid regimen started by my rheumatologist based on a couple of bulging cervical and lumbar discs and arthritis, even though the fibro (with attendant insomnia) is my primary problem. So, while I am very, very grateful to have a doc willing to do that, am I wonder if I am eventually making a problem for myself later down the road when I have to have the fibro diagnosis recorded and verified. It’s a difficult situation. Argue with the doc who keeps me at least moderately functional while dismissing my primary (and scientifically justified) disease? Or just grin and take the prescription? I don’t know if the fight is worth having after being fired by a PCP over questioning a bill (love the US medical system.). Crazy.

    • Oh I so get what you mean Debbie! You grin and bear whatever you have to so that whoever has the Power over whether you suffer severely or just a somewhat tolerable bit rules your life. You cringe and keep silent just so that they suddenly don’t decide you don’t “need” the pain relief medication anymore. It scares the hell out of me that the doctors with the Power (political or otherwise) to help create law or dictate “rules” for local health care may collectively decide our fate due to media or political pressure alone.

      What the hell about us right? Our well being, our quality of life. Heaven forbid someone might actually empower US to get whatever care and treatment we need to get us back to work! Heaven forbid it might enable us to become a productive (and tax paying) citizen again! Meanwhile they bitch and moan that we are a “burden to society” or the government. Well, freaking help us out! It just boggles my mind. As I’m sure it does you too Debbie. *gentle hugs* Hope your holidays are as pain free as possible, full of calm and peace and joy.

  4. I’ve been on opioids for about 20 yrs now, up and down with dosage according to my needs. (I’ve had CFIDS/CFS/ME and fibro, insomnia, migraines, etc for 38 yrs.) You simply do NOT get addicted to them if your doctor is skilled in pain management, you are in regular care of someone knowledgable and take meds as needed. I’ve written a lot about this on my blog, including the pain contract. It’s a hot button issue w/ me. Lyrica, ugh! Thank God I had a dr who admitted me to the hospital back in the day when there WERE admissions and they simply gave me a pump and kept going until they found the med that helped my pain.

    • Irene, thank you so much for leaving a comment. As you can tell this is a hot button issue with me too lol. I know what you mean with Lyrica as well. The only thing I know for sure is that Lyrica has contributed to my weight gain, big time! Yet I’m also pretty sure it helps with the nerve pain I get. So for me, it’s worth staying on. For now.

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