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Chronic Pain Is a Pain in The…

Chronic pain. It’s something that we all experience as RA and autoimmune patients. It’s a real issue, and pain always makes everything else much worse. Unfortunately, chronic pain isn’t like other disease symptoms in that it isn’t something that can be readily quantified. Because of this, some doctors don’t take it seriously, and even when they do, there aren’t many solutions out there. There’s pain meds, and as many of us know, it’s an imperfect solution at best, and a stigma for many. So let’s talk about chronic pain.

Pain: it can derail your life

Pain. Just saying the word makes people wince like sour candy or Kanye West. It’s something that everyone with autoimmune illness has to deal with, and for me, it’s probably the symptom that has most interfered with my quality of life. I remember when I was just eighteen years old, fresh off my first hip replacement with a second coming soon after. That was when I really began to understand just how debilitating pain could be. High dosages of corticosteroids had basically disintegrated both of my hips, and as anyone who has RA can tell you — jagged bone rubbing against jagged bone is about as painful as it gets. So, because of pain, the doctors told me that I had to get both of my hips replaced. I got a crash course in how pain can derail any life.

The role of pain medicine specialists in managing RA chronic pain

Fast forward about ten years. I was reaching the limits of the pain meds that my rheumatologist was comfortable prescribing so I had to go and see a pain medicine specialist. Now, I realize that was the moment that I strapped a yellow oblong ball and chain around my ankle (no, I didn’t marry a banana). Hindsight is 20/20 though, so when I first met with a pain specialist I followed along and enjoyed the sights, like a tour guide at the Natural History Museum. I began on high doses of percocet (the yellow oblong pill), and it worked! I was so happy to finally be out of pain I didn’t even bother fully considering the ramifications of starting on opioid therapy. Then again I was twenty-something with a full head of hair, a healthy libido, and a genuinely ridiculous-sized ego. I didn’t have time to stop and think about the proper order of beer and liquor, much less how starting opioids at an early age would affect me later in life (spoiler alert – liquor before beer, always).

The stigma of using pain medications

We can skip all the stuff I did in between then and now since we only have a limited amount of space. Also I think some of it is banned in most states. These days, I take a very large amount of opioid pain medication on a daily basis. With some time and perspective, I realize that the way everything shook out is that taking pain medication to combat chronic pain is pretty much like playing a soccer game to end in a draw. Sure, there are good times and bad, but in the end you still ask yourself “why did I do this?” Don’t get me wrong, I’m not lessening chronic pain itself. Chronic pain is horrible. It’s like a stealthy black octopus that uses its tentacles to stab you arbitrarily, with no regard for your hopes and dreams, and just when you think you’ve finally shaken it off, it climbs back onto you and resumes its dark task, skewering you all over, all over again. It saps your energy, it drinks your stamina like a latte, and it infects your mind with horrible thoughts so that you feel like the real you is pushed aside and forced to watch as some twisted caricature of yourself airBNB’s into your brain. You then have to use all your mental and physical fortitude to wrangle control of yourself back, pull yourself up by the bootstraps, and get on with things while you wait for the next episode that will inevitably come. It’s a mandatory full-time job where stress is your boss and he really doesn’t like you. That’s why even a half-measure is better than none, even though it comes with a significant stigma.

The opioid crisis

We all know about the so-called opioid crisis that currently has America in a death-grip. If you listen to reports, men, women, and children, are dropping dead in the streets in alarming numbers simply because some irresponsible doctor gave them a few pills of Vicodin or OxyContin, and suddenly they are selling their shoes for black tar heroin. Whatever the situation really is, there is one fact that is inescapable. If you take opioid medication, you are immediately branded as some kind of addict or drug abuser. It has happened to me more times than I can count, and I see reputable doctors at reputable hospitals. I have even had actual MDs question my use of pain medication even though I have over 15 years of well-documented legal use. I have had acquaintances assume I am some sort of secret drug dealer. I have even had pharmacists refuse to fill legitimate, legal, scripts, simply because “they aren’t comfortable with this amount.” Well boo-hoo Mr. pharmacist, guess what? I’m uncomfortable with the searing pain that occurs in my body on a daily basis, want to swap? This is dangerous because the more the attitudes towards pain meds deteriorate, the greater the chance they will stop prescribing them altogether. It’s something everyone who suffers from chronic pain fears.

As you can see there are so many pitfalls when it comes to treating chronic pain. I didn’t even cover the fact that in cases of fibromyalgia and some other diseases, many doctors don’t even believe the patients are in real pain. I can’t imagine going into the doctor’s office and having them tell me “oh no, you’re really not in pain.” If that ever happened, I guarantee both of us would be leaving in “real” pain. Chronic pain is real, it’s horrible, and it’s the worst symptom of an autoimmune disease. Making it such a pain to treat only adds insult to injury.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • RemedyReady
    4 months ago

    I was referred to a pain specialist by my rheumatologist and was given opioids hydrocodone which put me to sleep as soon as I swallowed it. And then was put on the burton patch and ended up in the ER with complications and panic attacks. My system does not handle opioids so the medication that I am prescribed doesn’t help my pain. Once it becomes severe I’m in bed shaking like a leaf trying to take my mind out of my body if that makes sense. Because of my spiritual beliefs I would never use CBD, but I am happy for those who found relief in it and in opioids.

  • Daniel Malito moderator author
    4 months ago

    @remedyready Not being able to find relief is a terrible thing, that’s for sure. It is difficult to find ways to cope, and pain meds, as good as they are sometimes, are also sometimes only a small help. I went through many different remedies myself before finding something that works, so all i can say is don’t give up, you never know what’s out there. I was able to do research, read great sites like this one and our Facebook page, and find a system that worked for me. Either way, know you’re not alone. We are always here for you if you need! Thanks for reading, keep on keepin’ on, DPM

  • Monica Y. Sengupta moderator
    4 months ago

    Hey @remedyready! Thanks so much for commenting. I am so sorry you don’t react well to the opioids. Have you spoken to your doctor about NSAIDS? They manage the pain and act as an anti-inflammatory.

    I thought this tab from our website might interest you: https://rheumatoidarthritis.net/natural-remedies/ There are some great natural alternatives to prescription medications.

    As with anything though, please double check with your doctor before introducing or changing part of your medical treatment!

    All the best, Monica

  • Daniel Malito moderator author
    4 months ago

    @remedyready Finding pain meds for me was a lifesaver, but that doesn’t mean it’s the only remedy out there. I know it can be overwhelming and frustrating but keep searching, there are other alternatives i’ve heard of. I can’t recommend anything technically but check out our Facebook page and the rest of the website, others have spoken about things they’ve done that has worked. Thanks for reading, keep on keepin’ on, DPM

  • Blue
    5 months ago

    I am 73years old and have had RA for 40 years. My main goal all these years has been to be as a productive member of society as i am able. I have always used some pain medication and had no problems. Now i walk into my pharmacy with my walker and deformed hands and a 20something clerk has the nerve to ask me if i REALLY need this drug. Then she feels it is necessary to check again with the pharmacist if it will be ok to fill my legal perscription. I am made to feel like a criminal all because some politician wants a “sound bite” and irrisponsible reporters want drama. How have we come to this? Very sad times ahead i am afraid. Your article is perfect. Thanks

  • Daniel Malito moderator author
    4 months ago

    @blue Thanks for reading, pharmacists, not all but most I’ve met, seem to think they always know better than doctors. Why that is I have no idea. Keep on keepin’ on, DPM

  • Dolores
    6 months ago

    Amen and Thank You! You took so many of the words right out of my mouth!
    Sincerely, Dolores

  • Daniel Malito moderator author
    6 months ago

    @dolores Thank YOU for reading. I’m so glad you found some value in my writing! It makes me feel like it’s all worth it. Keep on keepin’ on, DPM

  • Frazzled
    8 months ago

    Pain is a constant in my case of RA/RD. The doctors do blood work, they take x-rays, they do all sorts of tests, and they says, “Well, your joints seem to be fine.” Well, they’re not, they keep me awake at night (which just adds insult to my primary insomnia), and it makes it difficult to get through the day. PT helps and hurts at the same time – sometimes it feels great when they adjust my feet and make the pain go away, but then I suffer for another week while what they did heals. I did try Tramadol, which basically made my insomnia worse since it messes with serotonin and norepinephrine, so I stopped taking that. I finally turned to medical cannabis and it worked wonders for me at night. But since I have moved to a state that has made recreational cannabis legal, it makes it harder to find a doctor to certify me, and there are lots of other issues with that. And what to do during the day? I still need to work, and I can’t go walking around stoned. I have founds some stuff that is high in CBD, which I can use during the day without issue. Still, I am one drug test away from getting fired or having to stop use of that “legal” drug. And then what are my options? No one wants to prescribe opioid medication anymore so I am out of luck. So I take meds that are probably worse for me over the long haul (like Meloxicam) than an opioid would be, but it is the best thing I can get. Pain is really a pain, that is for sure…

  • Daniel Malito moderator author
    8 months ago

    @frazzled I’m sorry to hear about all your on going trouble but I’m sorry to say I have heard it too many times before. People are so afraid now to help anyone who comes in and claims they are in pain if they can’t document it, blood test it, and certify it with a notary, lol. At least you found something that sort of works, that’s something. Ugh, I wish i could do more for you. Keep on keepin’ on, DPM

  • DebbieH
    8 months ago

    I’m the state of California Sacramento is forbidden Kaiser doctors to give anything stronger than Norco. I was doing great on Methadone 2 daily then he yanked it away from me. It too a month if withdrawal and I was off the stuff but then every and i do mean every joint in my body hurt! I wasnt on any RA drugs since the Methatrexate caused my kidneys to fail. I totally love your article and will try the meditation method but it is a shame that a person with a legitimate disease can’t get comfort.

  • Daniel Malito moderator author
    8 months ago

    @debbieh Wow, that’s a shocking bit of information about Sacramento. I can’t believe that they put you through that and I’m sorry. I know how it feels to find something that works and then have it taken away. It happened to me when I couldn’t afford a medication I was on. I know this probably is something you are already looking into but I’d contact some news outlets and let them know what the real world effects of taking away people’s pain meds are. Thanks for reading, and please, do your best to keep on keepin’ on for all of us are with you. DPM

  • janlorraine
    12 months ago

    Thank you. I don’t know how to contact you privately, but I do need help. I am very unhappy with my doctor. Sometimes I feel as if I have been led down a garden path or like a fish that has swallowed a hook and is being reeled in ever so slowly because the line isn’t strong enough. Maybe I could get away, but the hook, line and sinker would still be in my mouth. Please let me know what to do next.
    janlorraine

  • Monica Y. Sengupta moderator
    4 months ago

    Hey Jan Lorraine @tqvh4w!

    I am so sorry you’re not happy with your doctor but I strongly believe you are entitled to a second opinion if you are not happy with your healthcare team.

    The Resource Finder at the Arthritis.org website can show you rheumatologists in your area. http://resourcefinder.arthritis.org/?_ga=2.40892642.1758232573.1561455499-1695362040.1561455499

    I, personally, think that is your first step. A good healthcare team is our first line of defense in managing our RA and we need to trust and like our doctors!

    I hope this is helpful and please reach out if you need to! Best, Monica

  • Lawrence 'rick' Phillips moderator
    1 year ago

    Yes it is real and it is a real pain. I have maintained a low dose of opioids, but one thing I cannot figure out is why anyone woudl abuse them. Hey if I could do without, I would give them up immediately.

  • Daniel Malito moderator author
    1 year ago

    You got it Rick Phillips (any relation to captain?). We don’t generally abuse them but you say opioids and somewhere in DC a politician gets his wings. Thanks for reading. DPM

  • janlorraine
    1 year ago

    I could have written some of this. Every time I have my pain management appointment, I come home in tears. I ask myself if I had known what I was getting myself into would I have done it. And how do I get out of it now? My doctors tell me that I am already taking as much medication as they can give me and it’s not enough for me to function in any way that could be called normal. Since I feel so awful even while taking pain medication why don’t I stop taking it and feel awful without it? I guess because I get an hour or two here and there when I get a glimmer or two of feeling normal. I feel trapped.

  • Daniel Malito moderator author
    1 year ago

    Jan they don’t like me to give medical advice out so I’ll give you some social advice. That doc isn’t good for you! Lol. I have heard stories of pain docs that don’t want to give the high amounts of pills that the patients actually need. I actually once had to see the doctor on call when my pain doctor was away. Even though it was a temporary visit this doctor whom I never saw in my life before tried to convince me to cut my pain pills in half and take Suboxone instead. He didn’t know me he didn’t know the pain I was in and he certainly didn’t know my extensive medical history. He simply did not want to write the prescription for my high doses of opioids that I had been taking for 10 years because it would mean he’d have a high dosage prescription on his record. You should probably see if you can find another pain management doctor in your area so that you can compare to the one you’re seeing now and determine if the problem lies with him. I know the feeling of being trapped in your own body and the point of a pain management doctor is to actually manage your pain. If you need suggestions in your area I can ask my pain doctor if he knows anyone where ever you are. Over the years my pain doctor has become one of my best friends and we even give seminars together to medical students about opioids not being concentrated evil in pill form. Hopefully this will mean the next generation of doctors treat pain medicines like actual medicine instead of something that they wish didn’t exist. Please let me know whatever I can do to help. Keep on keepin’ on. DPM

  • Daniel Malito moderator author
    1 year ago

    PS sorry for the bad grammar I am on my cell phone LOL

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