My Story: Pain Relationship Status, “It’s Complicated”

My Story: Pain Relationship Status, “It’s Complicated”

By Erin Margaret Joyce-VonBank

Editor’s Note: Erin lives in a Minneapolis suburb with her husband and daughter. She’s 30 years old and has suffered from arthritis since she was 5 years old. She advocated for those with chronic pain and Medical PTSD awareness.

My body is defined as my mind, body, and spirit.

My body is in an abusive relationship with pain.

(Abusive [uhbyoo-siv]  – adjective:  Treating badly or injuriously; mistreating, especially physically)

It has been give and take over the years – We have been through a lot together… and ultimately we are in it for the long haul. Though there are many parameters to my personal relationship with my body and with pain, lately my focus has been on being mindful of pains presence in my life.

The response to pain lately for me is to ignore. Life has been too busy to be in pain, so “pay no mind to the man behind the curtain” and pretend it isn’t there. The issue is, though the pain does not go away even if you pretend it doesn’t exist. There is no amount of will power, positive thinking, or ignorance that can simply make it disappear.

I was encouraged this past week to just sit with my pain. Give pain the Mic for a moment and listen to what it has to say. I didn’t have to respond, just listen. Though this did not make the pain leave- but it helped my mind address what I had been trying so hard to ignore.

Paired with knowledge of interpersonal relationships- I listened to what my body was screaming, and what I realized is that our communication is incredibly distorted. Have decades of neglect caused my body to act out to gather my attention?

I looked at my body’s relationship with pain and realized it has incredibly abusive lately. The pain- just like a child who is starved for attention, has been getting louder and more violent as my mind has tried harder and harder to mask it.  Some serious mixed signals as a result of poor communication have been relayed. BOOM- Mic drop.

The realization the pain has been hyper-reactive lately; scared that it will not get the attention it is asking for. This past week I have been making time to listen to the pain, giving it about 90 seconds each day to say its peace. I am not surprised to say that the pain hasn’t gone away. However since I have started this, the fight to ignore it has. Asking my body to tell me, “Where does it hurt?” has been met with, “This is where it hurts”.

I am noticing the shift in intense full body ache and pain that could not be defined, to definable pain in my knees and low back. The pain is concentrated to the areas it has been trying to direct me.  Perhaps the pain is even more so in these areas now that it has my attention, but it is different. I feel the difference from a full body tantrum versus the isolated areas.

The twisted mind game of questioning my body’s pain signals seems to be on hold as I practice this mindfulness technique. Practicing accepting what I can’t change, and asking to have my attention directed to where it is needed.

My response to this is to seek help for my structural abnormality. When I listen to my body, It makes sense what is going on, I can intellectualize its response. My right leg is about 3 inches shorter than my left- most likely as a result of 25 years of arthritis. As it goes my pelvis is extremely tilted, my spine is crooked and it is getting worse. Everything points to the short leg and how it is affecting me, not just physically- but mentally and spiritually also. I am 30 years old, yet my body feels like it is 80. It is weary, I am weary. It is asking for help, I am asking for help.

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There are 18 comments for this article
  1. Jon Morgan-Parker at 5:24 am

    To Carolyn Robinson.
    I loved reading your story. I don’t know if the moderators will allow for us to keep in touch either by email or facebook but I hope they read this and allow for us to continue to be in touch ? Please don’t let this terrorist of pain defeat you. There will be an answer to your prayers.

  2. Michelle at 1:13 pm

    Those of you that are looking for answers such as Charlotte Claxton and John, look into Adhesive Arachnoiditis. There are several good Facebook support groups also.

  3. Jon Morgan-Parker at 6:57 pm

    Hi Cynthia,
    I do know there is a Facebook Group for Chronic Pain Sufferers. I have been on there myself and you may find some new friends who you can contact etc..
    Good luck ,

  4. John at 6:02 am

    Dear Carolyn Robinson & Anji Boster,
    Wow! So inspired to read both of your stories. Speaking for myself, having Harrington-Rod surgery way back in June of 1986 at the age of 16
    (I’m 47 now) and never, ever, will forget what the Neurosurgeon told me and my parents…”if he dosen’t have the surgery, he will never walk. If he has the surgery, he be in pain of various levels his entire life.”
    The surgery went as well as expected. Having my left pelvic harvested for bone needed for my fusion from T-11 threw L-2 and the rods fastened with lage hooks and small wires.

    This surgery was courteous of a drunk driver and of course the drunk wasn’t hurt.or even ticketed for severely injuring 3 people. (The County Comisioner’s Son, enough said) Two of us had broken backs and my friend in the front seat went threw the windshield.

    Well as expected I’ve had cronic pain my whole life along with 3 other back surgeries for a total of 4. So kudos to you Anji for your “not recommending” Harrington Rod surgery! I’m very greatfull for the abilitiy to walk….
    And know there are more far worse than myself.
    This brings.me to January 2015. After working for the previous 28 years and only laid up for my surgies. I took pain meds rarely and never allowed any substance to control my life.
    Until… January 17, 2015 I severely fractured my Cervical vertebra @ C-5 & C-6 and if this wasn’t enogh I suffered from an S.P.I. (spinal-cord-injury) as well. I had my surgery March 2, 2015 and was miserable in the hospital for their look on pain had no apathy for the patient or the insensitivity of the quack who sent me home with NO ADEQUATE PAIN MEDICINE AT ALL! All I had was nerurontin and ultram. I walk out of his office the flowing week during my follow up dr visit. Once again my questions for him including why he sent me home from surgery suffering without pain medication fell on deaf ears. Why are so many legitimate people with REAL ISSUES SUFFER? I know doctors are leary of opoids. I know there is an epidemic with pain killers. I was treated like a drug addict in the E.R. seeking relief. Not tell my
    C/T was complete that clearly showed I had a broken neck! I was treated with any difference from a heroin-junkie.

    It’s now March of 2016 and my Cervical fusion has failed. Had another MRI and sure enough my C-4 is ruined and I’m looking at another neck surgery a mere 14 months later. Adding to this the new susurgeon put “Opoid Dependent”
    (I’d seen him once) on his report I so desperately needed to show Social Security Disability my condition is severe and CAN NOT WORK! Why and where this doctor thought I am opoid dependent? Because I asked the last neurosurgeon for pain meds twice? No where on any of doctor reports going back 28+ years does it mention opiod dependent. I have never been to pain management before. Just started February 2016 and feel “labled” however, I feel the pain more. Any advice good or bad would be appreciated. I’ve been trying for 18 months to get social security disability as well, been worse than my results than my cervical fusion. Our government nor our health care society bare put a label on someone who clearly needs medication to provide a better quality life for those of us that suffer and not looking to get high. I have no trouble with my pain clinic, drug testing or most of their rules. My big VENT is don’t put me in the generic label of “dependent or addict”
    Hang in there everybody and remember…
    “What’s taken for granted, could very easly be taken away!
    John

  5. Charlotte Claxton at 5:28 am

    I had an epidural with my second child,he was coming so quickly we didn’t think the doctor would get their in time, last chance for epidural so i did,i felt a pop the anestiologist said oops ot oh and proceeded farther up my back. My labor stopped for 11hours i was only 22 and no pain issues i was diagnosed with chronic fatgue syndrome then with fibromyalgia in all points of my body. I tried every homeopathic thing i could that was 1993 by 2003 i was placed on opiodis for pain just to be able to function somewhat regularly, my doctor over the course of a decade had me on 10 Percocet 10-325 a day sometimes i only needed 6 or 8 plus 20mg of oxycontin 3times a day for ten years i took myself off the oxycontin she has retired i was down to 4 10’s a day with pain at 4′-5 i just had L5-S1 SURGERY with less than favorable results still have small herniated disk in my sciatica fluid and scar tissue my foot goes numb and tingles and my low back spasms a lot low back sends pain down my bottom towards my knee i was fine before the epidural and the anesthesiologist staid around those 11-12 hours until i delivered then quickly had me sign papers for him that i didn’t get a copy of. My new doctor will only give me 2-10’s a day i used biofreeze a tenz machine Epsom salt baths, inversion table and heat and ice i can’t get anyone to check out what is in the hospital record’s of that birth i am now 44 divorced after 24years and trying to go to college i am afraid my body won’t let me my mind is willing was must rear-ended I was stopped he was going 40 plus miles an hour no brakes no insurance,how do i find out whsts really wrong with me must work now have only worked 20-30hrs since 98 pain clinics put me on strong doses if morphine or dilated and it doesn’t work until enough to be high i don’t like that just want to function with pain around 3-4 everyone deals with some pain what kind of doctor do i see to see if spinal cord “injury was misdiagnosed I have to find a way to function on a normal basis no one on my family has no history of this on either side please any help would be appreciated! Can i personally request those records? What kind of doctor do i see a psychiatrist? Constant pain is hard to get friends and good job when moody due to pain
    M

  6. Carolyn Robinson at 1:23 pm

    Hi Jon,

    I have been where you are…in fact, in 2013 I spent the entire year in crushing chronic pain from my lower back. My back is fused from the top to the bottom with only about 2 inches of the spine not fused. That year I had SI Joint Fusion which was suppose to “cure me and have me dancing again.” (The way you were about sports is the way I was about dancing.) In fact, this egotistical doctor sent a report to the Long Term Disability Insurance Company that he had “CURED me!” And then, gave me a report that showed I should not be working, sitting, standing, or walking for any length of time. My pain would become worse before it got better.

    Well, of course the insurance company took his report and stopped my payments. So a lawyer I went. After paying him for a month’s disability payment, the company started the payments again.

    After some time, I decided to try the Spinal Cord Stimulator – not my first choice. I don’t even like a tens unit. But I did the trial on the SCS and it was amazing. The doctor was able to get one lead in my back and all the pain on my right side was GONE!!! I mean gone! Now on the left side, I had pain. And when the lead was removed 5 days later it was amazing how quickly the pain on the right side came back. It reminded me of pain before SCS and so now I was on a search for a doctor to perform the surgery.

    It took me 8 months to find a doctor who would perform the surgery…because my back is fused as mentioned earlier, and the space was the only place the leads could be entered through. Well that was April 4, and I’d say my decrease in pain has been 30-40%. Not ideal like the trial was, but better than nothing. I have had the SCS reprogrammed several times and I think we have the program that works best for me right now. But I’m still on methodone and hydrocodone to help with the pain along the lower back (where the arthritis is and where the leads were not able to reach due to scar tissue.)

    In 2013, something else happened to me physically, and I had had it. I took the bottle of hydrocodone and went to the kitchen for a glass of milk. I was going to take them all and finally find relief. But we were out of milk. Can you believe that??? So there was definitely a reason why I wasn’t suppose to take off. I’ll be happy to listen to you any time you need someone to talk to .

    My husband had a very hard time with me at first because as a caregiver he had no idea the pain I was experiencing. But he hurt his back and now somewhat understands. Has your wife gone with you to your doctor’s appointments? Are there any chronic pain groups in your area?

    Just hang in there….and hopefully things will change for you to the good. You are in my prayers.

  7. Jon Morgan-Parker at 3:26 am

    To Anji Boster, and the editors of this Website.
    may I please ask for permission to contact Anji Boster by email ?

  8. Jon Morgan-Parker at 2:31 am

    I don’t think anyone will even read this anyway. But for self help dealing with pain. I will write it anyway! And if anyone does read this , who is alone? Or feels alone with physical pain. Please write to me . I dont have a real friend in the whole Goddamn World !
    I used to be a soldier of excellent conduct. Was almost a paid athlete. I played rugby with such passion that I got a trial for the Combined services Rugby Team. The next step and top level in physical endurance and Pride. The England Rugby Team !
    I was so fit and strong , I was recommended for and Scouted, to trial for the England 4 Man Bobsled Team. Because of my first 30 yds in sprinting and my mold so to speak. .
    I have swam and played water polo at the Olympic swimming Pool in Berlin.
    I used the above to paint a picture of complete passion for sport and physical fitness.
    The lads in the Regiment called me the ‘model soldier’. and not for my looks , behind my back !.
    I was born in Blackpool , so if you snapped me in half what you see is what you get. No agendas, no political beliefs , just a sportsman and has a passion for sports.
    I have broken almost every bone in my body , through sports. Its a passion. A belief . A moment in my life where I was at my peak .
    BUT !……… In my early 20’s, I broke my back playing against an Australian Team On Tour in UK.
    My disks are so bad, they hardly exist and my vertebrae are so damaged, the surgeon said “where would you like me to start ? It’s a mess. If I tried to fix you there is an 80% chance I could put you in a Wheelchair , permanently and still in pain. You are stuffed ! , Because I will not take that chance aaaaand, not a lot of other surgeons would either. There is no wonder you are in a lot of pain !”
    I used the maximum allowance of Morphine. To get me through a day of crippling ,agonising, soul destroying , marriage threatening , friend losing, Suicidal PAIN. From the fist thing I am conscious I am in pain before I open my eyes. Pain wakes me in the night, within 2 hrs of taking my painkillers. I cannot remember the last time I had slept through the night, without waking up and then trying to get back to sleep with it. A vice , or a knife in my back that I cannot release! Sleep is the only relief.
    I can most certainly, 100% sympathise and empathise with people in such a different world than most people even take time to think about. They see it inflicted enough on Tv , why would they think about it?
    My medication has so many Side effects , You could write a Government health warning booklet.
    I have learned to realise that the only people who actually appreciate this predicament. Are those who are suffering with Severe/chronic pain!
    Also , the moment of appreciation in my lifetime, to understand, my next and last years of my life, I am going in a Wheelchair and still have the pain to deal with ! For those who have got to read this far ?
    If You want to know how painful things can get for your body and spirit , before you give up? Set a pair of Moldgrips / locking Pliers anywhere on your body, you choose ? But tight enough to make you wince in pain. In a vice, for a week. But every day , it gets tighter! The pains vary from a dull constant pain to a sharp stabbing pain , that you don’t know when it will repeat 4-5 times within 5-10 seconds before going away, then repeating within the day. How long would someone who has never experienced that pain , last ? Before giving up ?
    Books are written on Pain. Chronic Pain. Pain beyond your belief ! Admittedly, the best ones are written by those , for those, who suffer Pain ! Not for those in the ache chapter.
    I am led to believe there are now studies on Snake Venom. To be used for Pain Relief because it works deep into the area of injection where there is numbness and no pain?

    I don’t want to give up. I just want to be pain free! I will not let this beat me !
    i have a loving wife and most beautiful , bright , loving daughter any Father could ask for !

  9. Cynthia at 8:37 pm

    Wow, great article, great comments. Yes, pain is an effing terrorist, a total tyrant and bully that moved in without being invited and won’t leave. And I do feel I have PTSD from 8 years of this bullying and abuse to my spirit. Yesterday was a day that allowed a little hope in, from a new meditation practice I’m trying. Today I got knocked to my knees from the pain. I used to have a good day now and then, no longer true, they rarely come along. A dr. Friend tells me to not give up. I’m too chicken to take my own life. But I’m not alive either. All I can do is lie down. What kind of life do you call that? Can’t sit, or stand, or walk, it is what it is, I guess. Btw, is there a support group or community ongoing blog for this site?

  10. Carolyn Robinson at 1:19 pm

    Mark, I totally agree!
    Carolyn

  11. Doug at 10:08 am

    Erin, very well put. As pain sufferers with chronic diseases no body can understand the battle that being fought within our bodies and minds, that is nobody else but ourselves. Some of our doctors pretend to understand while others could care less. I’m not sure if anyone else has problems with articulating our pain intensity to the physicians we see, I know that I do. Throughout the progression of my disease along with the steady increase of the pain that comes from it all, I know for a fact that I have lied to myself and my doctors, not for fear of showing weakness, but for fear of appearing like a drug seaker. I tell myself every day that the pain regiment of medication I’m talking is sufficient when in fact it’s far from it.
    I spend hours every day on the Internet reading blogs and making comments. Sharing my story with others who feel the same way I do is helpful. Reading the shares of the people who are in the same shoes as myself is therapeutic.
    I realized long ago that complete pain relief will never happen so I also play little games with my broken body. Every other month, I personally cut my pain medication dose in half for a 7 to 10 day period. I really believe that this has helped me maintain my monthly dose so I won’t need to have my doctors increase it because my body won’t ever get used the dose I’m currently taking. This approach may not work for everyone but I have had some success with it. Sure the pain is excruciating for the lower dose times but having the will power and strength to say no to it and trick my pain once in a while I really think that I have come to some sort of agreement with it. That agreement is that I won’t forget about it if the pain doesn’t control my life.
    Erin, I’ve really only lived with my increasing pain for the last 10 years and sometimes I really don’t feel like I can make it another 15 years but reading stories like yours and countless others will keep me fighting as long as I can. Please keep up your fight and keep writing because it brings a flicker of hope to all of us along with being therapeutic for you.

  12. Jean Price at 9:09 am

    Your story speaks to all of us when we try to ignore our pain. And we all use various mind games to survive, I think! Sometime we use distraction therapy to escape or ignore it. The problem for me is all activity increases my pain, and so does inactivity. So while I’m distracting myself, the pain grows and when I stop the distraction…it is overwhelming. I often think living with pain is like living a manic-depressive routine…when we feel a little better, we do more, which causes us to feel worse, and then we are out flat until we feel better… and then we do more to catch up! I have a system of “pain points” I use to determine what I’m willing to suffer for. A movie at a theater takes more than I’m willing to pay. Talking with a friend on the phone is usually well worth it. And being with my grandchildren tops the list…both in the points used and what I’m willing to pay! The points I pay are connected to my down time in bed, how much pain medication I use, how many other things I have to try (often without much help), and how much agony afterward I’m headed for! Of course, when my pain level is already high…there are few things I’m willing to pay more for. And you can’t really bank points for later…so it’s hard to have enough some days for a shower or a load of laundry when you’re out of underwear, or even a doctors appointment! Normally pain is meant to be a gift, to tell us something is wrong and needs our attention. Pain saves lives and directs us to appropriate care. That’s all well and good if the problem it’s talking about is fixable…but for most of us it’s not. So the pain becomes an unwanted voice constantly reminding us there is nothing to be done but endure it and ask it to please go away. When pain is 24/7/365…the goal of living a life despite it can be monumental and wearing on the body we are trying to take care of. Most of us are in an adversarial relationship with our pain, meaning we don’t want to pay attention to it, we curse it, we hate it, we treat it to go away with poor results, we would strangle it if it appeared in front of us instead of inside of us, and we don’t ever seek its company. Your article gives us a different view of the choices of how to respond…a way to make peace instead of constantly waging war. Because ultimately it’s part of us and if we war against it, we war against ourselves…how fulfilling a life does that lead too? In a pain imagery I do, I close my eyes and I picture my pain…its location, color, shape. Then, in my mind’s eye I pull it out of my body and hold it in front of me and say “I bless my pain.” Then I hand it to my imagery companion (someone who truly has my back!) and I ask them to bless it. I then ask if there is anything I need to do or to know, and I thank them and open my eyes. All of this is done in my mind’s eye…and it taps into our subconscious, helping us with the reality we are living. Oddly, it isn’t about intentionally imagining it…it usually just comes and it’s so powerful a tool to boost coping. Some days my pain appears as a dark, oozing sludge or something so pervasive I can’t get it out…no mater how hard I try. When this happens, I just bless my body that holds my pain and ask my companion to do the same. This doesn’t take a creative mind, I might add! It’s merely letting your mind open to where and what your pain might look like. And making peace with it in a special way. Our coping can definitely influence ou pain level, I think. Often we mix up our pain being worse with it just being draining… and our coping is running on fumes. One thing for certain…we all seek ways to live more fully within the reality of chronic pain. Use what works best for you, and be courageous enough to to try new things. That keeps hope alive!

  13. Bob Schubring at 9:08 am

    The problem with Force, is that it is a blunt instrument.

    If I never saw any tool used before, except a broadsword and a guillotine, I would imagine that every problem was a neck that hadn’t been cut.

    Which would be bloody-well useless if my problem was a lack of drinking water. There’s just no way to fix that, with a broadsword or a guillotine.

    When we teach ourselves to ignore the pain and force ourselves to keep going, we’re assuming that the pain will resolve by itself. A pain that’s screaming back at us, “I’m not going away!!”, is telling us that some effort on our part is needed, for the healing process to take place.

    The sooner we start learning by making that effort, the sooner we acquire new tools with which to deal with new problems, of which we were previously unaware.

  14. Anji Boster at 8:38 am

    My email got entered wrong so I’ll post again in case you wanted to get in touch.

  15. Anji Boster at 8:36 am

    I too know what you are explaining! I’ve had scoliosis since the 6th grade and had the Harrington rod surgery in the 8th grade (which I do NOT suggest) my hardware is now brokemail after being there 20 years. I hate my body and try so hard to ignore the pain, and continue to smile amyway. I’ve tried just about everything except the spinal cord stimulator and I’m not sure I ever will….the last thing I want is to put something else foreign in my body so it can wreck it’s havoc too. I wish you the best. I’m also in the Mn/WI area if you’d like to chat 🙂

  16. Carolyn Robinson at 6:21 am

    Hi Erin,
    I so know the misery you are explaining. It sounds like you have scoliosis. Have the doctors suggested surgery for Harrington Rods to help with your curvature? If you don’t want to go that route, has anyone suggest Spinal Cord Stimulator? You have a trial first before the actual unit is transplanted and I’ve received about 40% relief from it. I’m still taking pain medicines but I can walk on the treadmill – which is huge for me! Also, I walk with a cane. I am here if you want somebody to talk to. I’ve been there…with scoliosis since I was 17 and now I’m 60 with new problems. It’s a vicious circle but sometimes talking to somebody helps. I’m a very good listener!!!

  17. Mark Ibsen MD at 6:02 am

    Pain is an effing terrorist