Lupus and Pain Management: Begging for a Painkiller

Lupus and Pain Management: Begging for a Painkiller

My Mountain, My Lupus column

I’ve been wanting to talk about this subject for a while now, but it’s so complex a topic that I didn’t even know where to start. Hell, I hate ’em and love ’em all in the same instance, but they are a necessary evil in my life. You might have seen the news lately regarding opiates and the high amount of overdoses in America. No one really knows how reducing a prescribed painkiller would really affect someone with a chronic illness. I am going to start with a little background info on painkiller(s) so you have more than just a basic knowledge.

Living with Lupus means that, at some point or another, I am going to be taking a painkiller. I currently take Oxycodone and/or morphine, depending on where the pain is and how truly terrible it feels. I try to wait as long as I can until the pain is so unbearable that I am literally sobbing on the bathroom floor. Ultimately, and especially if I am in a flare-up, it’s a matter of when, not if. Down the hatch goes the painkiller, and for a few hours it feels … less.

Oxy doesn’t “feel good” at all,  and in fact it’s kind of a yucky feeling. Like somehow you’re not quite there but you are still totally there. Same with the pain. It’s more like you just don’t care that it hurts, if that makes sense.  I get itchy from it first of all, and it makes my skin super dry. I feel dehydrated and cranky. I tend to try to “do”more and then end up overdoing it, and hurting myself.

Opiates are either found naturally in the poppy plant or produced/manufactured in a lab, predominantly by pharmaceutical companies.

The NIDA (National Institute on Drug Abuse) states:

Medications [Painkillers] that fall within this class include hydrocodone (e.g., Vicodin), oxycodone (e.g., OxyContin, Percocet), morphine (e.g., Kadian, Avinza), codeine, and related drugs. … Opium and Heroin are also opiates, and therefore fall into the category of Opiate use, drug abuse, and overdose statistics.

I have been taking an opiate painkiller off an on, but fairly consistently, for about the last five years now. Trust me when I tell you this life, that I am living now, is not how I pictured my 30s. I mean, there I was, in the “prime” of my life, recently divorced and, though scared, I was innocently hopeful. I had walked away with nothing, heavy from the stench of defeat and loss. My spirit was broken and my body was beginning to show symptoms of what would later be diagnosed as Lupus.

I was lucky to escape with my children and my “mana,” my power, my passion, my fiery warrior spirit.

lupus yoga

What I could not escape was the fact that I had a chronic illness. My life would now include a ridiculous number of medications with a full symphony of side effects.

I try to get through the morning, then I try to get through the afternoon, then I try to go to sleep at night. This is my daily routine of pain management, literally just trying to get by. I mean I meditate, I go for walks, I do Yoga when my body isn’t in a full rebellion.  I try to stretch out my muscles, I take warm baths, I use ice packs for migraines and wraps for joint pain. I put Icy Hot on my left hip and lower back every night and have for over 18 months now. My pain management varies by the hour, and the cost of visits to the doctors for pain management alone can be sky-high.

At one point, I was taking over 28 pills throughout a given day. Many of them painkiller(s).

From antacids to Xanax, Benlysta to chemotherapy, they all wreak massive havoc on one part of your body or another. It truly becomes a battle of whether the positive effects of the drug outweigh the bad. Last week at my regular Dr. visit, he let me know that he would,

“have to lower and change the dosages on your pain meds. Moving forward, … that high of an amount would cause a red-flag on your chart and alert the DEA.”

Now don’t get me wrong. I am glad he’s helping me walk the tight rope of effective pain management and not being red-flagged. But are you freakin kidding me? How the hell did the DEA just get involved in the treatment of MY lupus?

"President

When did the war on drugs become a war on the disabled?

If you’re going to take away my painkillers, then give me a better one that isn’t highly addictive and killing people. But if we are going down this road, then you need to start addressing abuse for what it is — its own disease. Please leave me and my disease alone until you’re ready to actually get serious about pain management. It’s real and we do need better options.

I seriously hesitated to bring this up, 1. because I myself have love/hate relationship with them, but 2. out of fear. Pain management is a bit of a taboo subject and I always worry it makes me sound weak. As if, since I can’t handle it through other remedies, I am not as good of a person. But you know what? I am a good person and no one on this planet has ALL of the answers. We will never find a single answer if we do not start talking about it.

Someone other than myself and my Dr. made a decision to put my body at risk of another flare-up. I can’t even begin to understand why. Is it so that we as a society can pretend that addiction isn’t a mental health issue? Is it that the medical industry has been pushing highly addictive and dangerous medicines on the chronically ill? You know, as much as I want a cure for the future and a better painkiller tomorrow, can we address the real issue of opiates today? It’s time to stop making the disabled feel like we are begging for a painkiller.

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Lupus. 

19 comments

  1. Ann Campbell says:

    Imagine being me. 50 with lupus in a severe flare and RA and no Dr.no insurance no relief. I bartend and wait tables and it’s excruciating. Be grateful you have help.

    • Bridget Gardiner says:

      So sorry to hear that love and I am definitely grateful for the blessings in my life. Being a single mother with no help what so ever from their father, I do know what its like to feel helpless and alone. Check out my blog on FB “My Mountain My Lupus”. Its a wonderful supportive community with almost 2k in active followers. Everyone there looks after one another and I am always on there if you need someone to talk to. Plus, everyone is always posting tips and tricks that help with the symptoms from lupus as well as just being there if you need a virtual shoulder to cry on. Second Plus, someone on there may be in your area and able to help you find some additional resources that might be able to help you out. Good luck and I hope to hear from you again my love. -bridge

  2. Pamela Taylor says:

    Bravo! Sad day when the DEA becomes your Dr. We have a major crisis happening in pain management. The government’s next move will be to pull all of the opiates soon. Yet my Medical MJ isn’t free from my insurance company like my opiates are. We have a major problem here.

  3. Heather says:

    Bridget-I love your article it really spoke to my experience as well! I wish I had Facebook. I have a really hard time expressing my pain and disease to my family and friends and you do it so well!
    Your comment about how could they take away painkillers and how it can become an addiction is so true. What the drug companies need to do is find us a cure, not another painkiller we get addicted to!

  4. Sheila Dancu says:

    This story is so me. I have lupus and fibro. I go to pain management but what I get does not help me. My life is no life. In pain 24/7. No energy to even go get my hair cut. I have no life. My disickness is on the inside of me. So no one really understands why I don’t get out of the house. Can’t even clean the house. My doctors do not understand.

    • Bridget Gardiner says:

      I am so sorry to hear all of this Sheila and I know how hard it can be. Ive pulled myself out of the spiral a few times now and the worst part is, we know we will go down that pain killer road again when another flare up comes along. For now, I think you should focus on the little things that help you get out of bed. As hard as it is to make time for ourselves, it really is a part ofd the healing process my love. You need to get a hair cut, not just for your hair, but for your soul. You need to pamper yourself. Being single mom, I always think about that oxygen mask on the plane, and how I need tout it on myself first, then them. Otherwise I am no good to anyone. I am sending you tons of healing love and light, and let me know how your doing.

      xo
      bridge

    • Peggy says:

      I understand I have RA centered in my feet and legs, with fibro. I hurt so badly even with pain medications I want to just give up
      Peggy

  5. Sarah james says:

    Bridget I started to cry reading this because I can relate so much. I go to the VA in Augusta ga and I have been through 4 primary care doctors within the last year and a half because of pain management or one doctor was meeting me for the first time and I had a rash from taking prednisone and high Uric acid and I was asking for some cream to put on my chest and she said oh that looks like pimps. That same doctor asked me if someone had just told me I had lupus. I was dumbfounded that she would ask me that so I sarcastically told her about the manifestations and the many tubes of blood and times I have to go to the lab … some people are just not meant to be doctors. The primary care that I have now all she asked me is about my refill for my pain at my appointment and I was just in the ICU for 5 days for lupus she didn’t address that… also she won’t refill my clonzapam that I have been taking for 2 years and the reasoning is that oh I take narcotics. I’ve been taking hydrocodone for 5 years and the doctors won’t give me anything stronger and when I was in the icu I had to beg for something else and I was crying for 2days with pain and they finally gave me iv morphine which worked for 2-3hours so I could get some sleep … sometimes I think I just can’t anymore this disease will try to take you down I have been having some bladder pain and the doctors gave me a bunch of antibiotics but it didn’t go away they said there is no bacteria so I have acute cystitis no bacteria and they said that it is because of the lupus but when I ask for something for pain or anything they give me the same answer oh you’re too young you shouldn’t be taking all this medicine and you have small babies …so the doctors I guess just expect me to lay in bed all day and not take care of my two kids because when I have my bad days my hands seem to hurt the most and there is no way I can pick up my kids or make them a sandwich or anything… and if the climb on me is excruciating. I really don’t know what we should do about doctors abusing us neglecting our well being

    • Bridge Gardiner says:

      Hi Sarah. I am so sorry my love for everything your going through. Remember we pay those doctors to treat us, and if your not happy with yours, you definitely need to switch. That being said, pain management is definitely a crisis in this country and it goes beyond opiate addiction. Opiates are not something any of us wishes for ourselves, hell we wouldn’t wish those things on our worst enemy, but its ALL WE HAVE! We still have lives to live and without pain killers most of us can be found in the fetal position in our beds. We need a better way to treat the pain we are all going through, without having to use heavy narcotics to mask it. Thanks for commenting love and don’t ever hesitate to stop by and say hello, or reach out if you need someone to talk to.

      best,
      bridge

  6. Kasey Nelson says:

    This story is the ugly truth of living with a chronic illness. I’m 25 and have been dealing with lupus for the last 2 years. I didn’t imagine my life as it is now. At 25 you never prepare yourself for things like this to happen. I miss my old life, being pain free, having a full time job, keeping a relationship. The hardest thing is waking up every morning knowing you will be dealing with the same demons that exhaust you the day before. Waking up without pain is something I don’t know if I remember feeling anymore. I’m always taking something to try to stay “comfortable”. But the reality is that I’m very uncomfortable most of the time. I’ve gone through many treatments and I was in hope that Benlysta would work. I’ve been on it for 8 months and I haven’t showed as much improvement as they would want to see. So they are ending my treatment in 2 months. I’m very discouraged. I hope someday they find a cure!

    • Bridge Gardiner says:

      Hi Kasey,

      I know its easy to get discouraged with lupus. Especially when the “miracle” drug doesnt work like you hope it will. I too went down that same path. I was on Benlysta for close to a year. While it did give me 2 weeks of feeling pretty good, the first week after the treatment I was so sick I couldn’t keep any food down, and then the week before my next treatment I would slide back down the hill. It got to the point where I had lost 20lbs and my doctor finally said enough was enough.

      The worst part, was the pain in my body never actually went away. Looking back I just had more energy, which was nice but not worth it. I am hopeful that with the spotlight being on opiates these days that they will work to get new pain management care for us all. Thank you so much for commenting love and I hope you get to feeling some relief soon.

      best,
      bridge

      • Cindy says:

        Thank you so much for writing this! I’m having the same experience with pain management and e Benlysta. No relief the first week, good 2 weeks and rough week 4! I believe they are in the beta stages for a self injecting Benlysta, similar to humera dosing, that is supposed to be better and less time consuming.
        I did recently do some food allergy testing, holistically so it cover sensitivities as well as allergies, and found I had a ton of them! By avoiding those foods as well as doing desensitization treatments it has helped some what. I found out I was allergic to turmeric which they were giving me when I has 100’s of stomach bleeds from the anti inflammatories:(.
        Such a complicated disease! My PM doc recommended swimming because of a Nuero muscular connection that can happen when your in the water. Can’t hurt to try!
        Sorry you’re going through this but glad to know I’m not alone!!

  7. Erin says:

    THANK YOU SO MUCH! I’m so glad I found this article. I’m 23 now and a few months after graduating college in 2015, was suddenly slammed with all of the symptoms of an autoimmune disease…fatigue, worsened migraines, rapid weight loss, nausea, partial seizures, and, of course, pain (plus much more but that lupus/MTX fog is a killer and I can’t think of all right now lol). And all in a very severe way. Other than the few times I broke some bones in my early adolescence, I had never experienced pain in my life. When I began having issues, I was in my first semester of graduate school in NYC in the fall of ’15. Due to the sudden, severe onset of issues (I realize later, I was a walking ticking time bomb…great grandma had severe RA and dads cousin has Stills (juvenile arthritis) and can’t work at ALL. My grandmother had only boys so I was next in line) I had to request a semester long extension for my classes, something that, as an honors student in undergrad who in my last year, took 17 credits, had an internship AND a job, was totally a failure to me, and extremely disturbing/confusing/frustrating, not to mention upsetting. I was also bartending a LOT at the time and working a retail job, so I went from working/going to school in the fall at one point for 6 weeks with not one day off, to just a few months later, having to completely withdraw from my spring classes and quit my jobs in early ’16. I was rendered useless. My mom is a PT and has osteoarthritis, so after her period of denial about my condition, understood I needed help and worked with my GP who we are both close to to get me some pain meds so I could function while I found a rheumatologist. Problem there is that I was 22, and the first two rheumatologists that I wasted months of my time on didn’t take me seriously. The first, after prescribing me Mobic out of fear of prednisone being “too risky” with no reflection of disease in my blood work, suggested I see a therapist after I spent a night in the hospital because I had a partial seizure from the Mobic overwhelming my system that was already pumped full of around 20 Advil every day (which, has permanently ruined me for NSAIDS because I continually have the same reaction every time I take them now). Right before making the switch to see my current rheumy, triggered by the second one pushing sulfasalazine on me (ASPIRIN BASED!!!), my GP got to the point where she felt she couldn’t adequately manage my pain anymore and referred to a pain management specialist that she knew personally because otherwise there’s no way any clinic would take me due to my age. I have NEVER abused my meds for pleasure…only ever took more out of desperation to try to get out of pain. I’ve made the personal decision to struggle through keeping my dose the same so once I have a treatment that really works I can try to come off it and it wont be so hard, and have done so since starting at the clinic almost a year ago. Issue is, the current rheumy, who, though amazing and takes me seriously, is in Richmond…an 8 hour drive from my home in NY. luckily my boyfriend lives in MD so I have a pit stop, but seeing him regularly is difficult. But he’s he only one who’s helped aside from my pain Mgmt doc. I just a few weeks ago FINALLY got a diagnosis of all seronegative, lupus, RA and fibro. My blood is clean but I’m suffering so badly. The photosensitivity has finally popped up and the nasty malar rash I sported the day before I saw him kinda sealed the deal with that one. ANYWAY, to make a long story short, I feel as if I could’ve been the one to write this article. I cried when I read this. I just went up on my MTX injections to the max dose and I’m praying it helps because relying on my pain meds is incredibly difficult and makes me feel horrible about myself. I’m so tired of being labeled as an addict and drug seeking. My doctor was recently out of the country and the nurse at the office refused to help me when he was gone, a request I made only because of the fact I’ve been badly flaring and just landed myself in the hospital again from a dual kidney infection and passing a stone. I see him Monday and I so don’t want to ask to go up in dose but I feel I have no choice. I’ve very slowly started putting my life back together, going to school as much as I can, working in a first grade class and interning at a museum. It’s getting to the point again though that I’m afraid I will have to quit something because it’s too much. I know pain pills are not the answer to functioning in my life but right now what choice do I have?? I’m sorry for the novel I just wrote about my life story but this article touched me in the realest way. I try to remind myself that I’m not a junkie and that this medication doesn’t define me, that I’m a good person and deserve to have a high quality of life even if it means being dependent on these stupid freaking pills but it’s really hard. So thank you again for this article because it means so much to know some one else knows how I feel and understands what this situation is like. Not many people do, and I see people like my mom who’s had two hip replacements before 50 who suffers like I do, not to the same degree or in the same way, but still suffers, never taking pain meds and toughing through it all and I feel weak. I’m trying to get better and not be so hard on myself but I often feel I don’t deserve it and need to toughen up. Thank you for your bravery in writing this and thank you for understanding, even though I wish you never had to experience any of this. I wouldn’t wish it on my worst enemy.

  8. Ruthie says:

    Was thrilled to read your article. I’ve been misdiagnosed for 10 years as many of my symptoms were GI related including nausea, severe cramping and diarrhea but I also have flu-like malaise most the day, brain fog, etc. When I take only one half a Percocet I feel amazingly better, but I can’t take every day or my internist gets suspicious, even though it drastically improves my quality of life. I am 62 and I feel awful for those of you having such serious symptoms so young! My symptoms were only sporadic until after menopause, when I lost a lot of weight and had “migraines” in my gut from muscle spasms. Doctor telling me I have mixed connective tissue disorder which includes lupus. I hope they find a cure for you younger lupus sufferers–at least you were diagnosed, as many go years without proper diagnosis, but I know diagnosis still doesn’t help you feel better. I will look up your FB blog–Ruthie

  9. wendy f says:

    hi.
    i have had Lupus for 32 years now only getting results about 6 years ago, so i worked 3 jobs and brought up my two children up, (who have turned out great)just keeping my head above water paying bills.
    so when i woke-up every morning in the pain i used MIND OVER MATTER which was i have not got time to be ill today and just carry on even thou i have tryed many painkillers that just didnt work or doctors stop them as i am also ellergit to my own blood so tablets havnt got a chance.
    I,AM 52 now and riddle from top to bottom with this nasty lupus and still no painkiller.
    so if you would like some warning just ask.eg teeth/gums.lost all of mine in 4 months.
    and i have one of the worlds top consultans on lupus.
    wendy.

  10. MARY HOFFMAN says:

    Hi –
    It seems all I do lately is research on the internet. My Doctor, of over 25 years, has treated me for everything…. and yes, even my lupus. We all know the pain is so bad that the only choice we have is pain medication (I swear to you if any doctor asks me if I take Advil for the pain I am going to lose it… that is about as helpful as a glass of water). I happen to have a crazy tolerance for any medication – (I have to take 4 Excedrin migraine; I use to take 2 750mg anaprox (sp) for menstrual cramps! No lie – my doctor use to be shocked, but now she just knows…. my body does not register any medication easily – some it doesnt register at all. YET – NyQuil will keep me down for two days! lol Go figure….) anyway, I never abused my prescriptions, never fill early, used only one pharmacy and never shop around – – – I actually forced her to give me a pee test! hahaha. I was aware how the Government was punishing the good doctors and patients and never wanted her to get in any trouble. All that said – while these pills make life more manageable, they do not get me high and they certainly never ever get me fully out of pain. They make the pain manageable (usually – not always) well, 2 months ago, my doctor announced she will not write another script. She told me the DEA and our Governor (Christie – grrrr..I am in New Jersey) has made it to scary for her. She told me I must go to a Pain Management Doctor. I asked….no…I begged her to keep me on until I found a replacement. She said no. I left her office in a daze. How could MY doctor, the doctor who knew me as well as I knew myself, who is kind, caring and compassionate do this to me? She said it was not personal – yet, it was happening to me so I am not sure how anything gets more personal than that. I now have less than 30 days to find a doctor. I am scared to death. I do not know where I am suppose to go. Pain Management Doctors all talk about sticking me with needles, they are spine doctors, etc. I do not need them! This is far beyond my back pain and sciatica. I am not a drug addict. I resent being treated like one. Look – these pills help me – period. I have no issue taking them – As it is, my insurance company told my doctor she wrote me too many (INSURANCE COMPANY!!!! How the hell do they know what I need? This is out of control). I am aware of the side effects and the addiction possibility (being on them for as long as I have, chances are I have some serious withdrawals coming my way if I can not find a doctor) – and frankly, I am okay with that. It is my health here is it not? Do I no longer have a say? If my quality of life is better on these pills who the hell is our government to get involved and say I should not be on them?? Let them spend a day inside my skin – without pills – I bet they couldn’t handle the pain…. Honestly, If these pills cut my life a couple years short – I do not care….. I would rather live a QUALITY life – – – not a long painful one.
    Has anyone noticed that suicide is up among chronic pain patients? How about the fact that these patients are now also on Heroin – they can not get their pain medication anymore, but the heroin is readily available (and cheaper from what I read…. that drug scares me to death).
    All I know is that I am scared. I cry – alot. And we all know what this stress is doing to me……. it is flaring up my Lupus. OUCH. I just do not understand how any of this is happening. How are we living in a world where the addict is taken care of (okay, this is good) and the chronic pain patient is treated like the addict? (this is very very bad)
    Oh well, it felt good to vent. Thank you for reading this – (I know it was long) – I need to get back to google to see if there is anyone in New Jersey that can help me with this. I know there is somebody out there who can help – or at least point me in the right direction….. but my prescription bottle says I better find them quick.
    Be well everyone…. I always include all of us chronic pain people in my prayers…. I have to believe they will be answered.

    Mary

    • Bridge Gardiner says:

      Hi Mary,

      I am so sorry your having a rough time with your lupus. The insurance companies really don’t help relieve the stress either. Hang in there love.

      xo
      b

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