My Story: Good Grief – Tales from the CRPS Experience

My Story: Good Grief – Tales from the CRPS Experience

By Katelyn O’Leary

Katelyn O'Leary

Katelyn O’Leary

One of the things I hate about having CRPS (among many things) is how my emotions are closely tied to the pain in my leg. The more upset I get, the worse my pain is. I wish the pain would recede if I was gloriously happy, but of course it doesn’t work that way. Doctors, therapists, and my parents always tell me to let my emotions out, don’t bottle things up and to “feel” my pain. But I always worry, that by following this advice, I’ll have a flare up.

For those who don’t know, a “flare up” is a severe increase in nerve pain and symptoms of CRPS, resulting in hospitalization or total agony and suffering. It goes beyond the “normal” chronic pain we feel, and the sensitivity of my leg is so severe that having a blanket touch my leg is horrendous.

I had a flare up in early February after a friend of mine passed away from cancer, and in my grief I triggered this terrible nerve response and was hospitalized for 3 days. Our complex emotions are a big part of what makes us human, and our ability to feel for others is one of the many things that separates us from the animals.

Can you imagine being afraid of feeling sad, because you don’t know if your body will punish you for it?

A week ago my family’s dog died. She had lived a long life, nearly 15 years, and she had to be put to sleep due to her inability to walk. The absolute agony of losing my companion, the only creature in my life that loved me without guilt or complexity – but with true loyalty and purity was a devastating blow. It’s always hard explaining the grief that comes with losing a pet. Some can relate, but many wonder why you shed so many tears for something that isn’t human.

On the day she died, my brother called me so I could say goodbye to her. I could barely find the words as I tried to control my sobbing, knowing I would never see her again. It brought me back to my friend who I lost in January, wondering why life seemed to be throwing so many curveballs me.

They say God never gives you more than you can handle. This phrase has always bothered me, because it is simply not true. Sometimes God gives you basket upon basket of awfulness and the only thing that makes it possible to “handle” these moments is time. Time is the prescription my doctors have given me for my ketamine treatments and it is the marker by which I deal with my pain both external and internal.

So how do you move on when you’re afraid to cope, to feel, to emote? Tension, stress, and emotional instability are like landmines: once you step on one you’re screwed. It seems like a cruel joke, having a condition that is on the same wavelength of your grief, as if it is a barometer of externalized pain, a reminder of what has been lost and cannot be found.

Death is a part of life, and as we grow older we see more and more of it. Will I always have a flare up in my grief? Or is it possible for me to be sad without the physical pain? I wish I knew the answer to this question, and the many others that plague my mind during this difficult time.

My siblings and I are hoping to get my mother another dog, so that she can convert her grief into love for a new life and reinvigorate her home. I wish I could do the same for my pain, but for now I will focus on channeling my grief through physical exercise and the all-important thing: love. My brothers and sisters have been sharing various pictures and memories of our dog, memories filled with so much love and devotion. She was the connecting force of our family, she unified us and comforted us for most of our lives.

Remembering the good helps me think of this situation as good grief – a process of localized positive sadness – knowing that for a period of time I had the greatest companion. Maybe I’ll be lucky and have another chance at that. But for now, I’ll remember her as best I can, and hope more than anything that my leg doesn’t punish me for it.

Katelyn (Katie) O’Leary works in the entertainment industry in Los Angeles and is a frequent contributor to the National Pain Report.

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Authored by: Katelyn O’Leary

There are 14 comments for this article
  1. HJ at 5:02 am

    I had lost my cockatiel in February. She was a tremendous comfort to me and spending time with her fluffy self cuddled against my chin helped me put the pain on mute somewhat. On days when I was sad, I would tell her my problems and she knew I needed extra attention. They are there for us in a huge way.

    When I lost her, I felt like I was in a fog — like my life was suddenly “unreal.” Things I cared about just weren’t important. Did I forget to lock my apartment door? I would usually go back to check. But, Maggie wasn’t there any more, so who cares? I had nothing to “protect” behind a locked door… so I went to work, not worrying. I lost 10lbs in a week, because it literally *hurt* to eat. I have food allergies, and possibly irritable bowel syndrome (those two things are hard to sort out right now). My guts felt raw, and after eating I was sometimes nearly doubled-over in pain. It’s strange how grief takes our health issues and amplifies them.

    I miss Maggie dearly, but this week I brought home a new little spark in my life. He’s a green-cheeked conure named “Spencer.” I’m not in love with him yet, but he is central to my life and I’m certainly falling for him. It won’t be long. He’s a baby so he’s bitey… and we are working on it. My hands look like I’ve got the pox. My neck is much the same… but he’s learning and the bites are fewer and fewer each day. We share some magical moments. I cried over him the night after I brought him home, because I was grateful for him and at the same time still missing my Maggie. Grief is complex and time does heal.

    I responded strongly to what you said about losing a pet because it’s so fresh for me.

    I also thought about something else that I’ve come to realize… Physical pain and physical tension have a real psychological effect. It sounds common-sense, but it hits home after I have gotten my trigger point injections for my cervical spondylosis and I practically melt into the bus seat on my way home… To my embarrassment, I find myself sitting with my legs spread kind of like a man, with my arm over the back of the seat and I think of how cozy a bed would feel. Not only am I in a better mood… the tension in my shoulders melted away, I’m in an amazing psychological state that’s refreshing.

    I do think, that if I didn’t have shoulder/neck/upper back pain, that I would be a much more relaxed, happy person. Is it fair that I can’t be that person all the time? Is that who I *really* am? But I revel in it while I can enjoy it, and I look forward to the best sleep I ever have nowadays, and I spend the next few days feeling renewed from better sleep.

    Doctors may look at me and judge my mood, my attitude… but if they saw me after these treatments, they would have an entirely different assessment, I’m sure. The tension in my shoulders and neck affects me psychologically. It gives me less resilience, lower tolerance for stress and therefore a slightly more hesitant/cautious outlook on life.

    It amazes me, what a reflective glimpse into my chronic pain life teaches me about myself.

  2. Danny at 6:38 am

    What a wonderfully written article! The best part, for me, has been reading the comments. I don’t have CRPS. I was electrocuted over 25 years ago, resulting in brain damage that, among several problems, causes me to suffer excruciating, chronic head pain. While my head pain most often happens without any triggers, I have learned that strong emotions definitely are triggers for an “eepisode”. Whether it’s anger, stress or the emotions that came with the passing of my father or the recent diagnosis of terminal cancer for my best buddy of 50 years, these all have caused my pain to recur, even if I’ve just gotten through 14 days of severe pain.

    Knowing that I am not alone somehow makes things better. When I was electrocuted, the Internet was in its infancy. It would be several years before I learned that my problems are quite common among low-voltage, long-exposure electric shock victims. Now, upon hearing how emotions trigger pain in others, I don’t feel so isolated and “weird”.

    I’m sorry that all of you suffer pain as a result of emotional tumult, but your comments have helped someone a great deal today. I hope there’s some consolation for you in knowing that.

  3. Renee Mace at 9:42 am

    I swear, your letter sounded like what just happened to me, the only difference is that the pain is in both my legs but other than that, I could have sworn I wrote that. I am praying for you and I HURT for you.

  4. lorre león mendelson at 7:25 am

    Blessings to you and your sweetie pie. I am so sorry for your loss on your doggies way to the rainbow bridge. Sounds like she lived a happy life to live so long! In the 1600s René Descartes held the belief that the mind, body and spirit are independent of each other and many cultures of European decent, including us, chose to believe that and I think that is what creates the medical structure we have: medicine and treatment for each is different. I believe we are all one being combined of many lovely aspects and the mind cannot be separated from the physical body because the brain is also physical. I think the pain we feel, wether “emotional, spiritual or physical” is all connected because we are. I could easily get stuck on does my emotional pain trigger my RSD or vice versa? I have OCD so that is a trap for me. I attempt to embrace my pain in a Buddhist manner and thank my body for awareness and hold the painful parts to my heart. I think it is an on-going process of love and letting go of the anger in my foot injury that became RSD. I think many of us do need pain killers and can use them responsibly. I was in too much pain in my mindfulness classes at times to be mindful of anything but the pain. Sharing pain creates compassion for you but doesn’t connect me with you rather it is your openness, your hope and your love that is the connection. With all good wishes, Lorre Mendelson

  5. Doug at 2:47 pm

    People who don’t suffer from chronic pain just can’t imagine how emotional pain can trigger excruciating physical pain in those of us who do have chronic pain. Loosing a loved one, or yes even a pet can trigger a pain reaction in our bodies that’s totally unbeatable. Sadness and anger trigger our anxiety and depression to cause a chemical in balance in our already struggling systems.
    Emotion in people with chronic pain is high. Little things will trigger anger, happiness and the tears of sadness. Then there’s financial stress that in me causes the most pain. Our spouses, partners and the rest of the pain free world can’t possibly understand the connection between our emotions and our pain because they have never experienced it. This is where we have to educate them, this is where I wish someone could come up with a device that could trigger pain from emotion so it could be used on non chronic pain sufferers to demonstrated how we physically feel pain with our range of emotions.

  6. JoDawn at 2:42 pm

    (((((((Gentle hugs)))))
    My condolences on the loss of two wonderful friends. When I lost my companion dog two & a half years ago it was a horrible blow. Just last night I had an hour long crying jag after seeing a video that reminded me of him.
    The last few months I have had “some” remission. I’ve started watching the news again after 12 years.
    Thank you for bringing this part of CRPS to light. There are too many people that don’t realize what an effect emotions have.

    God Bless,
    Jo

  7. C. M. at 2:37 pm

    I too know this experience.
    I dread emotional upsets for the same reasons.
    I too dread walking (with a crutch) five too many steps in a day.
    There is a very fine line in over doing any aspect of life when having CRPS.
    CRPS is a monster that feeds from anything it can take.
    I am so sorry you’ve lost your dear four legged friend.
    Another CRPS sister

  8. Barbara at 1:59 pm

    Fantastic, you hit the nail on the head with your story. Sorry for your losses. My pups are 11 and its going to kill me when that time comes. 2 years ago I put a parrot down after 25 years with rebel. I am still grieving along with my other parrot. Seems we spend our lives trying not to go into a flare. I won’t go to hospitals. I won’t be treated like an addict period. My CRPS was from a wrist sprain, now its full body. My hands and nerves are lit like fuel and fire.I have a husband whom is a fantastic caregiver. Thank God for that. I do consider myself lucky Katelyn. All we can do is try and keep our emotions in check. God bless all !

  9. Katelyn OLeary at 12:58 pm

    Thank you all for your wonderful comments – I read them all and I truly appreciate your perspectives and support. Rock on friends 🙂

  10. Jean Price at 9:26 am

    Katie….your article speaks volumes to all of us about the reality of pain tied in with our life changes and losses. I was fortunate to have had a job experience where I learned about grief to help others….then when I hit the “pain wall”, I had tools to help me climb up on the bad days of emotional and spiritual pain on top of the physical pain I was in. It’s has been a life saver and I’m hoping at some point to get this information out in a way others might learn also. It’s not really a choice to grieve, it happens on its own. The real choice is to grieve through healthy ways and allow the pain of loss or to deny the feelings of grief and start down a slippery slope toward a bottomless hole, trying all type of things to keep from the truth of the loss. And it’s hard work to grieve healthily. Yet it does have a pay off, in that we grow and we also can still have what we lost be part of our life even if it’s in a different way. With pain, we must take it slowly and be generous with ourselves to lessen the backlash you speak of. If we deny the feelings though, we usually end up with worse backlashes and more turmoil. I also struggled with the statement that God doesn’t give us what we can’t handle! Then one day I realized that was only part of the real statement…they left out a comma and didn’t finish the thought! I believe the truer version is that God doesn’t give us more than we can handle (comma!) WHEN we are holding tightly to His hand….AND living in the “Now”!! My faith has been a learning experience, supported by many good people and happenings, and by God coming more than half way to meet me. I believe we are all spiritual beings and we all struggle to understand the whys and what’s and who’s of ourselves. Pain certainly brings this rushing toward us, and I think it helps to find a language (what I believe religion is) to explore and make some sense of it. I grew up thinking two and two always made four…if I was sensible and tried to do what was right, I’d do just fine. This doesn’t work well with pain, I didn’t do any thing wrong, neither did my doctor but I had a very poor outcome from a surgery that changed my life and ability to function. It didn’t add up, and really pain never does. When we allow it to NOT add up, then that puts us in a scary spot. To me, that where God is, or whatever your idea of a power bigger than you, is. Ready and willing to lend a hand and help us out of the scary stuff, trusting that we’ll have enough…enough comfort, enough care, enough support, enough of our needs met to make it through each day…even enough medications! There are so many parts of wellness, and pain or illness impacts many if not all of them…and usually all at once. Pain and suffering is never a contest…and we each must find our own mixture of coping and health care answers. One size fits all definitely doesn’t work with pain….and we each are our own best resource for answers, when we trust ourselves and our inner wisdom to know what we need, and to make the right decisions in finding the right paths at the time for our own individual needs. We need support and expertise and lots of information to do this, and the strength to change paths if needed! That’s why stories like yours help…we see what others think and feel and do and try, and it finds a place in our own lives. Thanks or sharing your feelings and your struggles. By doing this, you help us all connect, honestly and with courage.

  11. Kris at 8:46 am

    Well wow yes I understand this ….I do have a couple of very painful nerve related problems and they tell me my emotions and Anxiety makes it worse..But I suffer from daily Anxiety and I just can not shake it..LOL..

    But..wow I never thought about something that might make me sad may flare me too…so now I wonder should I turn off my TV? because I want so many shows and yes I get connected to my favorite characters LOL…I hope I am not the only crazy one on here…so when my show is in trouble…oh my , I call my boyfriend all upset…omg..is so and so really dead? do you think? I mean vampires keep coming back so who knows right?

    so as I read your sad frustrating story and I live a very painful chronic pain life…of course..this is me and please take no offense I am now laughing at my self of course..wondering if they only way to get better is to lock my self in a nice pink fluffy padded room with 1 kitty and some classic rock of my choice of like 4000 songs to pick from and a purrrfect bed that adjusts for my sleep number with the most lovely sheets and the most purrrfect 100 dollar pillow ….the most comfy p.j.s and a chef made to order my favorite organic bladder friendly foods for me on command every time I push a button..of course they come immediately. With this room having a small window with a balcony that over looks the ocean where I can get some fresh air a bit of vitamin D from the sun and maybe watch some dolphins play in the water…of course I would also need a private bath room with all my favorite make up and hair essentials so I could stay purrrrfectly gorgeous in my special room with no one or anything that could possibly upset me……………..hmmm…………

    Your story has opened my eyes some more….AS I sit stuck on my couch in pain with out proper pain management . I do go to counseling and I have very nice psychiatrist. But my favorite obgyn quit taking my insurance and my favorite urologist retired and I am getting worse and worse as I go from doctor to doctor trying to get some one to save my life before I just totally give up on it…………

    I can also tell you what someone once told me about that Phrase God does not give us more than we can handle …this was from a religious counselor my neighbor had me call..one she see’s …she said …god does not give us anything…he has given this earth to the devil…now we need to hold faith and put all our faith into God and believe he is will us and he can hear our thoughts and our prayers and the devil will do anything in his power to break that faith between us and our God…but the devil can not hear out thoughts…so my advice to you is to start acting crazy and see if it helps any LOL…no really….say out loud to the devil..get out of my head get out of my house get out of my body you are not welcome here I have God with me he is my Savior….not sure of your religion….( I add Jesus Christ as my Savoir and how he died for me on the cross) and it says in the bible we are already healed from his death….

    so I figured well this can not hurt and thanks for reminding me… because I have forgotten to keep ordering him out loud out of my head and my thoughts….and the devil he will not give up …so you keep praying to your God , You keep hanging onto your faith and you yell at that devil….and let everyone around you , You are indeed not crazy and than laugh …hey your leg may feel better??? just from the laughter alone………oh and I am not crazy either..just living with pain and trying to laugh.
    my prayers go out to you!

    healing hugs!

  12. Maureen at 7:31 am

    Katelyn, I’m ever so sorry for the loss of your dog. I know the feeling well.
    Also, I just want to say that your writing is very well said in regard to how our emotional state, stress etc. effects our pain.
    I just came out of 9 days of heightened pain and extreme fatigue from which I believe was triggered by a family issue. My life shut down and I was miserable since I could do nothing but struggle to get through each of those days until the day ended. And the lack of sleep from pain was very frustrating to say the least.
    I’m now on day 3 of feeling better now but…once again I learned the lesson of how easy emotional happenings or stress can so easily effect my pain condition.
    I wish you the best of luck with your treatments. Hang in there! Maureen

  13. Judy P at 4:28 am

    I “feel” your pain! The same thing happens to me. It’s awful! I’m sorry you go through it. I imagine many #CRPS people suffer as well.
    Thank you for expressing this information. It is great to get it out there to let others they are not alone!

  14. Julie at 3:46 am

    First of all, I’m so sorry for the losses in your life. I totally relate to the grief you feel for the loss of your family dog. They do become an integral part of our family.
    I also understand bottling up your emotions to prevent a flare up. I too have CRPS as well as Trigeminal Neuraligia (TN). Both of these conditions are affected by our emotions. My relationship with my husband is on the skids, and when I’m overwhelmed with sadness, I want to just cry and cry, but I won’t allow myself too for fear of going into a major flare. I also won’t let the stress of everything get to me. Maybe I’ll have a break down one day ( I probably will), but I just can’t do it now. I have children who depend on me. I can’t wind up in the hospital. Divorcing him at this point would just cause even more stress because of so many things so it’s like a catch 22. I just can’t win.
    I hate that we have to live in fear of letting our emotions really out. I don’t know if this will ever change for us, but I know I’m going to keep fighting the good fight and keep on going. Just know that you are not alone in how you feel and act. It’s just another wonderful part of this disease called CRPS.