My Story: Chronic Pain Changes a Life but Not the Person

My Story: Chronic Pain Changes a Life but Not the Person

I would like to start this article by thanking Ed Coghlan and his team at The National Pain Report for helping to get the message out about the daily struggles, obstacles and even successes of those who suffer from Chronic Pain.

I have been living with Chronic Pain since late 2009 after I was given an Epidural Steroid Injection to treat sciatica pain. Unfortunately for me the doctor who administered the injection pushed the needle too far resulting in the needle puncturing the spinal cord. The steroid entering into the spinal cord inflamed the Arachnoid layer of the spinal cord causing it to stick or “adhere” to the nerves and the nerve roots. The resulting condition is called “Adhesive Arachnoiditis” an insidious condition that has no cure and creates pain so severe that many have chosen suicide over spending the rest of their life trying to manage the horrible and relentless pain. As this condition progresses scar tissue continues to build up around the nerve roots. For many this will increase the pain, create problems such as the loss of bladder and bowel function and in some cases the ability to walk.

I was 49 years old when this happened to me; I was in great physical shape and was very active. I worked in a very busy Interventional Cardiac Cath Lab at a local hospital. It was very challenging yet rewarding work. Our teams were on call and had to respond to a person coming into the ER having a heart attack at all hours of the day and night. I spent many days working 18-20 hour shifts. The work was intense, an adrenalines junkies dream job! There is great satisfaction in working with a few other well trained people to prevent someone from dying.  This was a second career for me, I had always wanted to work in healthcare, my Mom was a nurse and I was very interested in helping people.

I had owned and operated a 6 store pizza franchise and decided to sell it just before I turned 40. I spent 13 years as a volunteer with Search and Rescue in Washington State where I owned my pizza stores. I moved to Florida went back to school and spent 8 years in healthcare. I would still be working if the injection hadn’t taken that and everything else I considered to be “My Life” at that point from me.

The first 2 years of having Adhesive Arachnoiditis were incredibly painful and depressing. My doctors couldn’t seem to manage my pain. They had me on Oxycodone and OxyContin, 2 very strong opioids that are considered some of the strongest on the market. I would take pills constantly with little to no relief. I would lie in bed screaming from the pain. On several occasions my wife (she has since left and we divorced, she stated “I didn’t sign up for this!”) would take me to the ER where the doctors who knew me would just knock me out. The pain, the frustration and depression of not being able to work, the lack of support from my wife and the financial burden this was creating brought me to come very close to suicide on 2 occasions.

Nearing the end of my second year I met a doctor who was willing to listen to me and try to find relief from the hell I was going through. I told him I couldn’t see myself living for too much longer if this was what my quality of life was going to be like. He had me take a DNA test, a mouth swab, and sent it into a company that will tell you exactly how your body metabolizes medicines. We learned that my body does not metabolize either Oxycodone or OxyContin! So for 2 years I wasn’t getting any benefit from all of the drugs I was taking! He put me on a drug called Nucynta and within a few days I was feeling better than I had felt in 2 years! I could think rationally and my pain level had dropped down to a level that I was able to at least function. In the 6 years that I have had this condition I have yet to find a medication, or combination of medicines that will bring my pain level below a 5 or 6.

In the past few years I have turned my focus to helping others deal with the effects of Chronic Pain. Not just the physical parts but the emotional and mental issues that have just as devastating an effect as the physical pain. I have taken a line from a favorite movie of mine, The Shawshank Redemption, in which Tim Robbins states near the end of the movie “I guess it comes down to a simple choice, really. Get busy living or get busy dying.”  I have learned that my pain, although very intense and disabling can’t be what defines who I am! I will not let it steal my life from me! It is a choice! I have many days that doing things, anything, is difficult or impossible, but on the days that I’m up I keep busy. I spend time playing with my grandchildren, I help at a soup kitchen, I help people getting information on a wide variety of issues either on line or I go to their homes. I can’t do a lot but I can live my life and I can be productive!

I had a dream to live on a boat, everyone said I was crazy! I was told on several occasions “You can’t do that!” Last November I purchased an older Trawler, a live abroad boat that has 2 bedrooms, 2 bathrooms, a small kitchen and a small sitting area. A friend of mine helped me get the boat into great operational condition; he did the vast majority of the work. I wanted to move over to the west side of Florida. We cruised from Ft. Pierce, Florida on the Atlantic side of the state to Ft Walton Beach, Florida in the panhandle. The trip took us around the state, through the Florida Keys, up the west side of the state, across the Gulf of Mexico and down nearly the entire length of the panhandle. Neither one of us had ever done anything like this! It took 17 days! I was in pretty bad pain by the end of the trip but the experience was something I will never forget! My goal was to live on the boat in Ft Walton Beach near my daughter’s home. As my pain and condition has progressed that is turning out to be something I won’t be able to do. However, I experienced something few people in great health ever do; I lived my dream in spite of the pain!

I have talked to many people over the last few years about living with Chronic Pain. I have tried to explain to those who have never experienced it what a very personal thing pain is and how difficult it is to generalize pain, or put everyone in the same box. I have tried to encourage those whose lives have been changed by pain to focus on what they “can” do vs what they can’t! Our lives have changed, there is no doubt about that, but we are still very much alive with so much to offer the world! Another great quote from the Shawshank Redemption is this, “…..Hope is a good thing, maybe the best of things, and no good thing ever dies.”

Editor’s Note: Tom Bresnahan lives an active life in Ft Walton Beach Florida. His two grown children and two “beautiful grandchildren live near him.”

Authored by: Thomas Bresnahan

There are 26 comments for this article
  1. Susan at 3:33 pm

    Thank you for sharing your story Thomas. Glad you were able to take that sailing trip. I’m sure that was fantastic. I love boating and being near the water.
    I also have adhesive arachnoiditis. Without the relief from the pain medications I take I am not sure how I’d get through each day with this horrible unrelenting pain.
    There definitely needs to be more awareness about arachnoiditis. Hard enough just dealing with the pain daily and the limits it has placed on your life, let alone finding a doctor that will acknowledge it and diagnose you properly. Unfortunately I hear this same story from others with arachnoiditis that are searching for some relief and understanding.

  2. Pankaj Papnoi at 1:27 am

    It is great to know that while living with pain, you have learn to live your dreams too Tom. the quote from Shawshank Redemption just nailed it and tells all of us the way forward for coming out of misery. Yes Hope is the best of things. I too have Arachnoiditis since one and half year. I am fortunate to have joined support group in Facebook and have learnt to accept my situation as such, trying to live the moments.

    I wish you best of journey into your dreams, low pain days ahead and pray that the condition doesn’t progress.

  3. Gayle L. at 11:27 am

    —-Good grief, Thomas, that is simply hideous! After reading about your truly awful experience and condition, you make me ashamed to even call what I experience, “pain.” .…….I believe I shall begin to call it “temporary discomfort.”

    —You have a wonderful attitude and outlook! I need to take a page from your book; I have been so incredibly lucky: financially independent, loving family, top education , exciting career…..However, for the past two years I have done nothing, actually (except things for myself)…Your generous attitude in the face of great pain is truly inspiring….

    —The ONLY “pain limitations” I absolutely won’t give in to involve exercise; I refuse to allow pain to dictate my overall cardiovascular health and weight (this involves intricate warm-ups, heat application, meditation & pain meds prior to swimming or biking). Some days are excruciating, but really, exercise enables me to better withstand pain itself, and also helps my mental state (it sounds like your problem, Thomas, may exclude most types of exercise…..maybe light hand weights to start?)

    —-I wish you all the best, my friend. Keep caring…

  4. Rhonda Posey at 3:20 am

    Thank you for sharing your journey with this life altering disease. Your courage to follow your dream inspite of the challenges living with chronic pain presents is inspiring.
    I also have Adhesive Arachnoiditis due to an epidural steroid injection. The needle went too far, puncturing the dura, forever changing my life in an instant.
    Those of us suffering from AA are met with constant struggles. We face unimaginable pain and bizarre symptoms, depression and grief as we try to reconcile the person of before and of now. The “I can’s” are much different now and although limited, are possible. You are proof of this!
    Awareness and education of these toxic injections is needed on a grand scale. Patients need the truth lined out in front of them before signing “informed” consent. The risk of Arachnoiditis should be explained before ESI’S, not after the damage is done and it’s the first time ever hearing this word. Then it becomes up to the victims to spread the word through articles such as yours.
    I am happy to see that already your story has impacted the decision of one to not go forward with an ESI! Although, I’m sure you have reached many with your story of incredible strength.
    Thank you again.

  5. Jon McHann at 6:53 am

    Thank you for sharing OUR story Ed. Due to a workplace accident 9 years ago I went from working 12 hour days as a commercial driver specializing in over-size freight, to barely able to operate the remote for my T.V.!

    I loved my job! Never considered it work! One of the few who couldn’t wait to get to work in the morning. It was that way for 29 years. I slipped and fell on day doing something I did every day, several times a day. Two bulging discs created intense pain and Surgery was required due to Cauda Equina Syndrome. The pain post surgery was off the scale and it never stopped after. Within a year, I had two ESI injections with the last one leaving me with Chemically Induced Meningitis.

    At about the one year mark post accident, I was diagnosed with Adhesive Arachnoiditis by one of the leading neurosurgeons in the country. He told me with tears in his eyes as he read my file and he offered to testify pro bono if I wanted or needed to pursue legal action. In the mean time I had exhausted a sizable list of pain killers trying to numb the constant intractable pain. Finally it broke me one day – I was going to have to deal with it the best I can, and re define my life. I mourned the loss of many dreams that are not possible anymore. I lost my wife, some family members, and many friends that can’t understand this invisible disease.

    I am thankful to be alive now thanks to God and good pain control. Many thanks to Ed and other Chronic pain patients for bravely telling their stories.

  6. Nancy J Powell at 8:44 pm

    Thanks for sharing your story Tom. You continue to inspire people by sharing not only your story, but how you work every day to adjust to a new normal, and still make yourself available to help others at all times. I have known Tom for more than 30 years, and he is one of the kindest, most generous souls I know. It breaks my heart that he deals with this on a daily basis, but he does not seek sympathy…just understanding and answers/solutions to help those that suffer from chronic pain. He continues to fight (as we all should), for laws that allow him and others dealing with chronic pain to have access to meds that will help them continue to live as normal of a life as possible. He inspires me every day, with his ability to work through his pain so he can be present for those he loves.

  7. Marlisa Griffith at 9:38 pm

    Thanks for sharing your journey. I was a healthy active RN in a busy ER prior to developing Arachnoiditis. It’s a difficult life with this disease, but I find your story and determination inspiring. It offers me a little hope. I appreciate you shining some light on this debilitating disease that most have never heard of.

  8. Carolyn K at 12:09 pm

    Thank you for sharing. Your story is very moving and will encourage many people.

  9. Robin Allen at 12:04 pm

    Hi Tom,
    I do not have Adhesive Arachnoiditis, but I am so sorry to hear everything you have gone through. Our stories are incredibly similar, but I have a rare form of chronic pelvic nerve pain as a result of a hysterectomy. The surgery was just over 5 years ago and my life has never been the same. I used to work as an administrative assistant for a busy medical practice and also held a part-time job teaching adult education classes for a vocational school. After the surgery I went to more specialists than i care to remember in the hopes of finding a ‘cure’ for this disease. It took 9 months just to get a diagnosis along with having several procedures, none of which were successful. There is no cure, the pain is constant despite being on multiple pain medications, and the emotional aspect has wreaked havoc with my life. Eventually I resigned from the medical practice as I was unable to continue working with the pain being so intense. I’m 51 years old and planned on working until retirement. But, as the old saying goes, “If you want to make God laugh, tell him your plans.” Now I’m on SSDI, something I never in a million years imagined happening. They let me continue with my teaching job as it’s only a few hours each week, but even that is beginning to take a toll.
    My children, father, and two of my aunts cannot, or will not, understand this disease or try to understand what I’m going through. I have tried to explain it, but it doesn’t work. I was told by my children that I am too miserable to be around and if I just tried harder to be ‘my old self’ I could do it. So, I have put a smile on my face when inside my body is screaming. I’ve tried to laugh and be fun to be with. But that didn’t work because they said I was faking it. UGH. Like your wife, they didn’t sign on for this. So, instead they bailed. I have some family members who are very understanding, along with my friends. But I don’t bring the subject up to them for fear they will leave also.
    There has not been a day that has gone by in the last 5 years that I have not wished to die. I even have a plan to do it myself. I wish I could find a meaning to all of this. Maybe I will eventually, but any hope I have had in the past seems to be dwindling.
    I’m sorry for the long response and for venting. I appreciate your article and everything you have gone through and continue to go through; it was a pleasure to read. Thank you.

  10. Terri Anderson at 6:52 am

    Thank you Tom for sharing your inspiration with all of us. I hope you will do another story about your trip around the Florida coastline and how you managed your pain during your trip. The misdiagnosis of adhesive arachnoiditis is usually our first obstacle to overcome, and now some of the experts are sharing that they no longer think arachnoiditis is rare. Dr. Forest Tennant is asking all of us to spread the word about central pain syndromes: http://foresttennant.com/pain_management_articles.html

    Central pain does not typically respond to more “intervention” (such as spinal injections). He shares that our spinal fluid turns over about 4 times a day. It is made in the brain and leaks out through the lining in a passive manner. Scarring is the cause of CSF (cerebral spinal fluid) flow blockage, and AA patients have inflammatory waste particles that become on-going, foreign irritants. He also thinks that every AA patient should find other agents that specifically reduce the inflammation caused by microglial cells, as ordinary anti-inflammatory agents don’t help much. And thanks Ed for another story about Arachnoiditis!

  11. Terri Anderson at 6:46 am

    Thank you Tom for sharing your inspiration with all of us. I hope you will do another story about your trip around the Florida coastline and how you managed your pain during your trip. The misdiagnosis of adhesive arachnoiditis is usually our first obstacle to overcome, and now some of the experts are sharing that they no longer think arachnoiditis is rare. Dr. Forest Tennant is asking all of us to spread the word about central pain syndromes as they typically do not respond to more “intervention”. He shares that our spinal fluid turns over about 4 times a day. It is made in the brain and leaks out through the lining in a passive manner. Scarring is the cause of CSF (cerebral spinal fluid) flow blockage, and AA patients have inflammatory waste particles that become on-going, foreign irritants. He also thinks that every AA patient should find other agents that specifically reduce the inflammation caused by microglial cells, as ordinary anti-inflammatory agents don’t help much. And thanks Ed for another story about Arachnoidtis!

  12. marty at 2:32 am

    Reading Tom’s story made me cry. I had a similar experience only it was with my hip and a injection and try as I might I never got answers. I just got thrown around from doctor to doctor while I spent a year and a half of my life in bed screaming and crying and begging to die because of the pain. To cut to the end, finally one day they sent me to a rather new doctor and within 2 weeks I had a new hip which helped enormously but unfortunately in the meantime so much damage was done to my back that I have to use a walker and the pain is unbearable at times but nothing like when I got the injection in my hip. I’m glad Tom found his way and didn’t give up. I thought about suicide but in the end was glad I was a coward because even though I am still in massive pain and don’t have much of a life, I am glad to wake up every day to see my kids and grandkids. Bless you Tom and thank you. I finally don’t feel so alone

  13. Gracie Bagosy-Young at 7:43 pm

    Thank you for sharing! I think it can often be difficult to differentiate between what we do and who we are. We tend to think “what good am I if I cannot work?” I have been there! The truth, I believe, is that chronic pain can steal what you do. ..but it can never steal who you are! We are mothers and fathers, husbands and wives, sisters and brothers, children, lovers, friends, neighbors, teachers, gifts….who are you deep down inside? The pain may make you forget for a while. But that person is still inside!

  14. Wendy Schreiber at 7:14 pm

    I don’t have this disorder, but I have so many friends who are either considering epidurals or who have suffered from the mistakes made administering them. I had an epidural mistake when I was in labor. I was numb for two days and it was a mess! I think there needs to be a better means of administering them so that errors are not made. I’m reading that they can use sonography to be more accurate. Was sonography used for yours? It seems like it should be common place to be as accurate as possible. It wasn’t used for mine, and honestly, it should have been!

  15. mary bresnahan at 6:09 pm

    Tom is my brother. To see this healthy, happy man go from having the world in his hands to fighting each and every day thru intense pain, with little to no relief , has been horrible His “normal” life now involves little to no sleep ,as the pain keeps him awake.
    Yet he fights through the pain and is up and available each day for his grandchildren ,that he loves.
    Their has got to be federal monies put towards research into this ” not so common” affliction. Tom has found through his incredibly difficult journey ,people just like him who are dealing through this horrific pain, and who struggle to do the simplest of things in their every day lives, due to this chronic pain. He has reached out to so many of them and listened to their stories, all so similar to his, a life changed forever.
    It is time for all of the victims who struggle with Arachnoiditis, to have their plea for help be heard. We all need to add our voices to theirs and fight for a solution to this devastating condition.

  16. Lisa Cartagena at 5:27 pm

    Thank you so much for sharing your story. I like you and others have AA and life as i know it has changed forever. God bless u

  17. Denise R Molohon at 4:47 pm

    What an inspiring story Thomas! While I hated to read how you were permanently harmed by a steroid injection into the spine that led to your Adhesive Arachnoiditis, the loss of your career and your marriage, and the debilitating, chronic pain that you now live with, you truly DO give hope to so many millions of people who are fighting every day to overcome their own daily battles “to focus on what they “can” do vs. what they can’t!” More and more people are being diagnosed with your disease, Adhesive Arachnoiditis, every day due to the millions of steroid injections given annually and explosive growth in spinal surgeries and in fact, I just read recently where one expert stated that “the incidence of arachnoiditis has risen about 400% in the past decade.” I think your Shawshank movie quotes were brilliant in facing a life of Chronic Pain and I thank you for the courage to share your story with us.

  18. Ken F at 3:11 pm

    Thank you for your story. It sounds very familiar since I also have this. It should be noted that adhesive arachnoiditis is far from being rare. I have met a lot of people with it. With doctors pushing epidural injections for back pain, it is rising to epedemic proportions. Plus the risk of developing arachnoiditis from spine surgery is on the rise. God bless you for sharing this.

  19. Michelle Babcock at 3:07 pm

    Thomas – thank you so much for sharing your story and spreading awareness. I can relate to much of your story having been diagnosed with adhesive arachnoiditis after an epidural for childbirth gone awry at the age of 31. You are right that life will never be the same, but it goes on with many adaptations and a positive attitude. Thank you again for your story.

  20. Julie at 1:23 pm

    I also had a nerve block that went wrong and got Arachnoiditis too. There needs to be more publicized about this. There needs to be more research on how to help us Arachnoiditis sufferers.

  21. Bob Swift at 12:39 pm

    Tom, thanks for sharing your story. It is heartfelt and sincere. My hope is that you have many more good days than bad in the years to come. I have severe lower back pain myself, though no where near as severe as yours. I have tolerated it for many many years with medication and was just about ready to pull the trigger on injections when I heard of your story. I immediately put the breaks on that as I always feared the worst. I will continue to work with my Doctors on the other meds and deal with the pharmacy hassles as well to continue to find relief.
    I’m happy to hear you have achieved your goal of living on the “boat”, it sounds great. I hope your story will help others before it strikes them. God Bless Tom.
    Peace!

  22. millie andreasen at 12:17 pm

    Tommy, I am sorry that you are going through, and have gone through. I was a victim of medical malpractice and have had 5 spinal surgeries to correct what the original Ortho did to my spine. I can relate to your story, and there are millions of us with stories just like yours, mine, etc. We need to be heard, and we need to let the medical community know how our lives have changed due to their mistakes. Thanks for telling your story. BTW, I did not fine a malpractice lawsuit, which I should have, but by the time that my life was starting to get a bit better, I ran out of time… :/

  23. Michell Freeman at 11:16 am

    Thank you Thomas for sharing your story with us. This is by far from being rare. So many of us suffer from Adhesive Arachnoiditis daily and share your pain. I hope this helps to bring awareness to this chronic pain conditions and our communities as well as the medical community understand there are so many of us out here.

  24. Adam Bresnahan at 10:54 am

    Adhesive arachnoiditis is indeed a horrible condition. It should also be mentioned that the condition is not curable for the reason that the scar tissue “adhering” the nerve fibers together cannot, of course, be cut without destroying the spinal cord itself. Moreover, the pain caused in the limbs is, as far as my father has told me, the worst. This pain, however, is not caused by any physical defect of the limbs themselves, but rather by the signals sent by the damaged nerves in the spine. Thus, with the exception of using painkillers to a degree that would ultimately make leading one’s life impossible, there is no efficient, 100% way numb the pain. The fact that the condition was with near certainty caused by the injections mentioned, which were performed with a substance contraindicated for this type of procedure, should be taken as a clue for the fact that activism is necessary in order to compel the FDA to place a black box warning on the medication for this procedure.

  25. Carla Reynolds at 10:52 am

    Thank you Thomas for sharing your story! Omg, I can so relate to everything you said as I too have Adhesive Arachnoiditis. I got mine the same way, because a needle went too far! Hence life as I knew it ceased. I was once a very active 50 year old grand mother of six that could and did do everything until this debilitating condition left me with this horrible life of constant pain, constant battles with doctors and a constant reminder that you will never be the same. I despise taking pills everyday and like you there are many and they are strong. I am still trying to come to grips and God willing maybe one day I will. God bless you my friend!

  26. Donna Corley at 10:26 am

    Thank you so much for sharing your story and helping to spread the word about this horrible disease, in hopes to warn others so they do not end up with Adhesive Arachnoiditis like hundred’s of us already do.