Coping with Chronic Pain

Coping with Chronic Pain

Recently, a young man contacted me seeking assistance with his efforts in attempting to cope with chronic pain. In his search on how to cope with chronic pain, he was simply looking for someone to listen, perhaps offer a few suggestions and provide support relative to the ongoing struggle living life with chronic pain presents. He also desired to find the life tools to adapt to the struggle and maintain meaning in his life. It is a heartbreaking conversation to have with someone who should be enjoying a career, having the choice of raising a family and enjoying the many opportunities available to most in his age bracket. Instead, many chronic pain patients are on disability, unable to have a family, losing friendships and most importantly, feeling lost with little sense of purpose and meaning in their lives.  For him, this is all due to an unfortunate accident that immediately altered his life journey and personal development. This same conversation has taken place with him before, but he has remained frozen in place and unable to move forward.

Ellen Lenox Smith

If we aren’t careful and don’t mourn the losses we have to face, we can get stuck on hold and not find a way to cope. Some of us just can’t stop dwelling on the negative and become psychologically paralyzed thus unable to develop even the most basic coping mechanism enabling patients to move forward.

What Can We Do To Take Some Control Back?

  • Do allow yourself time to mourn your losses but limit the time you allow yourself to do this, knowing that to begin your new journey you must get beyond this critical stage.
  • Learn techniques of things you can do to help take some control back like reducing inflammation through addressing food and drug sensitivities – MRT testing for food and Genelex DNA testing for medications.
  • Find a way to allow your emotions to be expressed to help cleanse your soul – therapist, writing, talking, support group, exercising in a manner safe with your condition – what is a better fit for you
  • Learn to accept significant changes with family and friends – you will most likely be continued to be cared about but not all will remain in your original circle. Reasons for slipping away from you vary from you not being able to keep up with the lifestyle you shared, to lack of understanding, to even finding your circumstances too painful and sad to be around. Someday in time, may you find it in your heart to forgive this abandonment and find the peace you deserve.
  • Surround yourself with others that do understand and you can open up with.
  • Find an outlet to help you refocus your life, one that you can enjoy – possibly writing, music, volunteering, or whatever fits your circumstance and is safe, productive and distracting!
  • Find a way, if possible, to move your body despite your restrictions. The pool, yoga, gentle exercises that won’t make things worse but can help to strengthen both your body and soul.

Learning to cope with a chronic illness is not a picnic. It takes determination and a will to try to move on despite the horror, pain, losses, and the unknown you face. Yet, we have to negotiate and find tools that help us to live. We each experience different things, but share the need to find our way and reinvent our purpose and meaning. It isn’t easy but we have to keep reminding ourselves, this is our one life to live.

May life be kind to you,

Ellen Lenox Smith

Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Authored by: Ellen Lenox Smith

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

24
Leave a Reply

2000
24 Comment threads
0 Thread replies
0 Followers
 
Most reacted comment
Hottest comment thread
21 Comment authors
  Subscribe  
newest oldest
Notify of

Thank you for helping me learn more about chronic pain. I like how you said to find outlets for your emotions. My aunt has chronic pain. She will be interested to know that finding ways to take care of yourself including your emotions can help.

Angela Petersen

thank you for sharing , coping is something i need to do or learn , your article hit right on …i live with a chronic autoimmune disease Dermatomyositis (a muscle inflammation disease) for 8 yrs now and im told once i accept this new life of mine it will some how get easier, lol even though i know this deep in my heart somehow i cant get past what was my life, for some reason society deems you worthy only if you go out there and make that ol mighty dollar ..i havent had a paycheck in 2yrs now and rely on family to support my until i can some kind of financial assistance from the ol mighty government who was always there to tax my check but now that i seek assistance is fighting my tooth and nail . yes coping is something i long and hope to accomplish in this NEW life. crossing my fingers i get there before i lose my mind. Peace and love to all and keep fighting the fight.

Glen

Mia Maysack writes “It’ like a competition to see who has the most pain——–that no one should want to win”. “Fixating on how an individual thinks does not benefit our cause”. There are one one in nineteen American getting disability. You know that some are fakers, some don’t need opiates, but in any case they hurt us and make money for bogus Attornies. Of course the Anti-opiate experts throw us into that catagory. Think of the National cost. If and when the government goes after them for fraud, rest assured they will not read all of the narratives describing our pain. The fakers and lawyers use them.

Laurie

When I got full onset of my Dystonia- a movement disorder with constant muscle contractions pulling my bones apart, I was in far too much pain to even think about anything else.
Since psychiatrist had seen similar things in the nuthouses, they thought that, esp women, were just mentally ill.
Nope, it was their neuroleptic drugs that did it. funny, huh?
Sure people left, sure I was scared, but the pain was so all consuming that I really barely noticed.
As time went on I had to fight for ALL my care, including surgery to remove the worst muscles-10hours of it. I knew how to isolate muscles from years of yoga and weight training, so I invented my own physical therapy. Nobody else knew what to do with me!
And I got a VERY good result.
I still have a bad case, but at least I’m not twisted up like a pretzel anymore.

I’ve had so much bad luck that I’ve become pretty numb to it and just do the best I can. I’ve sure learned acceptance…forgiveness? Who needs it except myself.
I DO understand why people abandoned me, who used to be on of the “IT” girls in the community.
I also understand how VERY limited Western medicine is.
I’ve had to fight all my life to just live it. Now, I’m just doing what my body demands without pain control of any kind.
OOOoRAh!
PS: oh yeah, I got blamed a lot for my situation ( it’s genetic, what could I have done?). It’s just easier to have limited contact with people anymore

Glen

I have not lost any friends because of my chronic pain. I had chosen solitude long before I became a cripple. I was a teenager and watched my dad suffer and die slowly from cancer. He was a good man. We went to Church on Sunday, Prayer meetings on Wednesday, and choir practice on Thursday. We had Church picnics, Bowling, Skating parties and Vacation Bible school in summer. I can still recite Bible verses from memory. So many Ministers came to try to heal Dad. One read from Scripture about “healing foods”. One was goats milk, so we got a goat. I milked a goat twice a day. He died in 1966. I was fifteen. I decided that I did not want to have kids that might someday watch me suffer and die. This is not a sad story, at least not to me.There will be no crying and no funeral. I did have a good life. These days I don’t need “goals, plans, or rehabilitation”. I do need my Dog and Oxycodone.

It’s amazingly valuable to speak with people who understand our condition. As infants our needs are overwhelming as we can do almost nothing for ourselves. As adults, when we get overwhelmed by too much stress, it’s valuable to borrow someone else’s mind, share some ideas, and double check our own ideas for anything obvious we missed. Caring for others is often more frightening than it actually is difficult. Elizabeth Kubler Ross explained grieving as beginning with denial…we want to find out that we heard the message wrong, that Dad was only asleep, that my neighbor’s son will walk home in uniform with a sea bag, not come home in a flag draped coffin. We go from denial to anger. It takes awhile to get all the way to sorrow. Losing some of our abilities is exactly like losing a friend. We mourn what we lost. Friends who can accept what we’re going through are absolutely the people we most need.

Bradley Bill Parker

Thank You for sharing good information that contains Wisdom for sure and You are very Kind. My Bests To You and Yours, SINCERELY YOURS Mr Bradley Bill Parker✝️⛹️

Jeff Shapiro

Keep going to any pain Mgmt. Dr around maybe you can get. right pain meds.

Jeff Shapiro

The government. is bad news

Lisa Hess

Ellen, once again you have hit the nail on the head. Besides the physical aspects of my hardware and software engineering job, my brain was just as important to do my job well. Chronic pain had been part of my life for the ten years prior to my disability, and I worked day and night to forget about it. Due to the mind consuming work, I dreamt of retirement and become a full time crafter. Fourteen years ago, my world crashed. I could no longer work after my third spine surgery. I would never again see those paychecks, have camaraderie with my workmates, and the respect of those whom I taught how to troubleshoot very difficult networks. I became that full time crafter. I was able to keep my hands and mind occupied away from the pain in my spine, nerves and muscles. Agoraphobia had set in due to the private disability insurance recording my comings and goings in the first year of my disability. For the past two years I’ve not been able to continue my crafting passion. I am much older and much sicker from diseases that Late Stage Lyme Disease has allowed to infiltrate my body. I have no defense mechanisms to fight infections. My mental state has diminished into deep depression and I’ve lost several friends over the years due to my physical and mental pain. People do not understand unless they live a day in my shoes. It’s taken years for my friends and family to understand what my life has endured over the past 24 years. The Government has taken force with what my doctor prescribes to help my pain. He feels the need to lower my opioid medications over 3/4 which leaves me several days a week in bed over months at a time. Depression when the joints in my arms and fingers don’t allow me to hold a pencil because the level of medication isn’t enough to help with the pain. I hope one day this government nightmare is over and some semblance for quality of life returns to our painful lives that we have endured since 2016.

Marsha Blunk

Yep, it’s [edit] taking meds from chronic pain patients because of junkies. Suicides will probably rise because miserable living with pain.

Cindy

FYI – To all readers, please read this post about a column in yesterday’s free medical/drug email newsletter called STAT PHARMALOT.

The column that is so irksome to CPP’s was entitled “For every 69 high-dose opioid prescriptions, U.S. pharmacies dispensed only one overdose-reversal drug”.

I wrote a Comment to the effect that, CPP’s taking opioid Rx’s under medical supervision are not the people who overdose, and I have no concern about me OD’ing, and so, while my Pain Manager recently told me that he called in an Rx for Naloxone to my pharmacy b/c he was legally required to do so, I have no intention of filling it — esp given its hefty price. The pharmacist told me that I don’t have to buy it and I told my pain manager that I don’t plan to.

Other readers posted similar comments.

One post said that due to all these needless naloxone Rx’s, druggies are having big parties, knowing that they have the OD med on hand if it’s needed.

Here is the link to the article. I hope that many of you will comment along the same idea that I did. If enough of us post, then maybe the publishers of STAT will get the message.

https://www.statnews.com/2019/08/06/naloxone-prescriptions-opioids-cdc-report/?utm_source=STAT+Newsletters&utm_campaign=66563a89e3-Pharmalot&utm_medium=email&utm_term=0_8cab1d7961-66563a89e3-150904293

Wendy Paley

Ellen, First of all I would like to thank you for all of your enlightening articles. You are an excellent writer and I enjoy reading all of your posts. I also hope you will be able to get some relief from the jaw pain you have.

Cynthia, I am a 71-year-old lady who lives in California. You said you were looking for some pen pals. I also have chronic spine pain from damage done to my sacral nerve roots during surgery in January 2015. My husband died of cancer in January this year and most of my friends have deserted me, over time. Feel free to email me anytime at jdwrpaley@cox.net. Regards, Wendy

Cindy

I have never heard of the food testing or drug testing mentioned in this column.

I have heard of IGG food sensitivity testing, and had that many years ago.

I saw an allergist recently and discussed IGG. She never mentioned MRT.

When googled MRT, it was far too technical for me.

Given their importance, I hope a future column will explain all these tests in laymans terms.

Also, my current PCP frequently has mentioned diet (esp gluten) and its impact on inflammation, and the importance of inflammation in disease, and I am so amazed by her doing this b/c after seeing tons of doctors in my life, I had concluded that none of them know anything about nutrition and don’t seem to have any interest in it. My current PCP is not young, and so her differing view is not an age thing. But she does restrict her own diet due to food sensitivities.

And, my PCP has mentioned IGG but never MRT, and never the drug testing mentioned in this column, even though we’ve both expressed concern about all the horrid additives in most if not all meds, such as the disgusting blue liquid Advil and its generics, and all the other Rx and OTC drugs that have needless colors and additives.

Stacey Childers

I live with chronic pain from lupus. SLE to be exact. There are days I cant walk, there are days I cant get off the sofa and I am suppose to listen to music or wrote poetry and that will ease my pain? Are you kidding me?
All of the reported opioid deaths are NOT due to pain medication. Most are due to heroin and fentanyl. The main stream has jumped on the band wagon and taken away the very medications we need to live and care for ourselves and our families. There are no needles, no books, no creams that are going to help us. We need the meds that do help us and we need access to them. The ones who are using them illegally are not going to drs to get them they are getting them off the streets. We aren’t selling our meds we are taking them. Test us, count us. Do whatever needs to be done but stop denying us our meds. I have had 3 people in my life commit suicide because they couldn’t live with the pain any longer day after day after day but we aren’t discussing that now are we? Enough is enough and we need to be considered here. Our needs and our need to live a life.

We have diseases and have been hurt in accidents and we live a limited life as it is. We need help living not dying.

Jean Smith

I uave a question for the passion community.
But a little history, I broke my leg in 1999- double compound fx of the tib-fib non-union. 8 surgeries and 2 sets of plates and pins with iliac crest transplant and a spinal stimulator later, I still have to take my Tylenol/aspirin 4x’s/day plus my muscle relaxer and cymbalta. My pain doctor only gives me 30 Percocet and I grit through the pain and only take it when NOTHING else works. I make them last at least a month and a half.
My question is, when I’m hurting I get the sweats, diarrhea and nausea. Does anyone else?

Lynn

Sadly…many of the thoughts contributed to a new life of disability are based on truth. For example…those once the closest friends, cannot deal with the person you’ve become. It becomes a scary reminder that it might happen to them. A disabled person needs to examine their worth. But not their worth based on the actions and opinions of others. Not an easy task. But it must be considered in order for their life to move on. No matter how their life evolves. As one who knows…my heartfelt opinion goes out to the disabled who feel that life has ended, are alone, and think that no one cares. In time…your perspective can change.

Thomas Wayne Kidd

I am continually amazed at the complete rejection of the absolute most important thing needed by people in this life. JESUS CHRIST THE HOPE OF THE WORLD. A person need not go seeking Him and His Salvation among the many so-called Christian groups! We all have access to what is called the WORD OF GOD the Bible. Any serious seeker can find peace and contentment in CHRIST if they will honestly come with faith and believing that He is who He claims to be. He is the key to all of our problems; “But without FAITH it is IMPOSSIBLE to please Him: for He / they that cometh to God must believe that He is, and is a rewarder of them that DILIGENTLY SEEK HIM.(Hebrews 11:6). In my 30+. Years of suffering from daily chronic pain I would have committed suicide long ago without my Lord and Redeemer Jesus Christ. Contrary to what millions believe, Jesus Christ is mankind’s only hope. I have proved my Creator over and over. I recommend Him to one and all. And especially I will encourage everyone to read and learn His revealed Word, The Bible for yourselves, take no one’s word for what is written in His Word. The evidence is most plain of what happens when people follow men instead of CHRIST. The results of this is a spiritually sleeping church. Wake up and open your ears to THE TRUTH, which is found only in Christ Jesus, THE RESURRECTION AND THE LIFE. Apart from Him all will perish! Your friend and lover of CHRIST and His truth; Thomas Kidd.

Ann Sable

This, truly, made me cry. I had my life slowly taken away from me at the age of 19 from a day-time drunk driver while I was on my way to work. Just fresh out of high school, not many hours left before I became an EMT that I worked hard for during school, all the while, doing Vocational school, working at a nursing home, a new Poet and publoc reasings/speaking and raising a friend’s baby. Was never to walk again and fought that, but lost everything else mentioned above. But a year and a half later, in the 1st trimester, I lost a twin to my daughter that barely made it herself. Two years later, my body tried to get rid of my second daughter; which left me bed ridden for 7 months, her and I both, almost didn’t make it after delivery. Fast forwarding the years of constant dr appts, medications, therapy of every sort and etc, I was left with nothing but disabling physical, mental and emotional issues from treatments to no treatments at all. I am now 42 years old. All those years, I was told that I was too young, and now, it’s normal aging…? I had to abandon all that I was and passionate about and was very trying to just be a moth and a wife. I have had over 25+ surgeries and am need to fix my spinal disabilities now and they won’t. Although, I am left without any female reproductive organs, apendix, gallbladder, 2 ft of small intestines and 4 hernia repairs (and they say that pain and spinal injuries don’t don’t ruin organs -they are wrong). Being misdiagnosed for many years and ignored the real problems, which led to all the above. I am isolated now with only one friend that is a yr older than me and isn’t going to live much longer. Family has turned away and many of them don’t want to see or hear it any longer and most believe the stigma of opiates, sadly. I am left with all of this and severe anxiety, chronic stress and tension from all of it and have tried everything under the sun to cope. Bless you all!

Christopher

You are spot on with everything you observed. There is, however, one extremely important action that most everyone forgets to mention, and that is the need to get up each morning and begin an amended version of the early morning ritual in which you engaged before your injury/onset of illness. Get up each morning and shower, eat breakfast, read the paper online, everything that you can still do post injury onset. Do NOT get into a routine that allows for your rapid decline into a world of depression, sleeping the days away, etc.

You must repurpose ourselves lest we lose ourselves…

Christopher

cynthia

Thank you for a very nice article. For me, after eleven years with incurable spine pain, what I need most are some pen pals, if anyone knows where there are people in pain who would like to do emailing, please post that information here. I’d greatly appreciate it.

Danny

Wow. Reading this was the first thing I did this morning and it was like having a glass of ice-water thrown in my face as an alarm clock. It’s almost like Ms. Smith was writing it to me.

Specifically, “(I am) on disability, unable to have a family, losing friendships and most importantly, feeling lost with little sense of purpose and meaning in (my life)…(I’ve) remained frozen in place and unable to move forward”.

Ironically, my accident occurred over 28 years ago. And while Ms. Smith’s words certainly applied to me in the first few years after my accident, my life has been like “Groundhog Day”, reliving these feelings and emotions she describes, every few years.

I thought that once I’d dealt with my new so-called “life” (after eventually coming to terms with the fact that it was truly a life-long condition), I’d be able to move on. But the reality, for me at least, is that it’s a recurring nightmare. I find that I don’t wake up from this nightmare at the beginning – I’m well into it before I realize I’ve slipped back into these negative feelings. So, I have to deal with all of it again. And it gets harder and harder every time.

Thank you, Ms. Smith, for this early wake up call. You’ve helped me realize that I need to start dealing with these things – again.

Robert

Some very good points Ellen, but we are all individuals and some are in far more serious conditions than others. It is necessary to adapt to the reality of your condition and focus what you have to the positive. It is also necessary, in my humble opinion, to recognize that this is being perpetrated with deliberate intent by our government.

I have read so many comments over the years by CPP’s asking why our government does not recognize our suffering. They do and it is shameful.

Personally, it is my faith in God that has given me the strength to endure my condition. I suggest listening to some of the personal testimonies of Jim Caviezel. He finds a way to put life in it’s proper perspective.

Ellen, You gave this individual very sound and empathetic advice. You put into words the things that are the very essence of life as someone suffering from chronic pain. Losing friends, especially the ones that were so close can be devastating, and if not dealt with in a healthy manner we become angry and unforgiving, we withdraw into a shell. When we look back on the things and people we have lost is can become more than a person can take. I believe we have to “reprogram” ourselves to the new limitations physically, emotionally, and spiritually. I personally have found that spiritual exploration and growth has been key to forgiveness and redirecting my life.
I want to commend you on your kind and gentle approach to others in our “community”.
God Bless You,
Bill Runge