My Story: Adjusting

My Story: Adjusting

by Jenny Picciotto

Jenny Picciotto

Jenny Picciotto

Editor’s Note: Jenny Picciotto is a writer who has CRPS and facilitates a CRPS support group. She is currently working on a larger project that will include this article, but has given us permission to publish this article in the meantime. She is also a massage therapist and yoga instructor, and enjoys thinking deeply about simple things. 

I’m approaching my fifth anniversary of being diagnosed with Complex Regional Pain Syndrome (CRPS), a disorder of the nervous system that affects nerve signaling, the immune system, and blood vessel function. People with CRPS experience intense pain, swelling, sensitivity to touch, alterations in limb temperature, changes in bone metabolism, and muscular problems. Some people have mild symptoms and recover, while others suffer ongoing severe pain and disability. Experts don’t understand the cause of CRPS, or what treatments are effective to manage it.[1]

I am adjusting. I am still adjusting. I think I will always be adjusting.

It began with sensitivity in the ball of my foot while playing tennis that felt as if a bone was grinding into the court. It progressed until I couldn’t bear weight and was walking on the edge of my foot. After a year and a half of conservative treatment with four different doctors, I landed in a podiatric surgeon’s office. He was sure he could help me with the tools in his tool box – surgery.  Four weeks post surgery, my foot was still swollen, severely bruised, and I was making weekly visits to his office to have it unwrapped and washed. One night I woke up in pain like I had never experienced before; searing, burning, unbearable pain. The next time I saw my surgeon, he diagnosed CRPS.

Since then, everything has been adjustment.

I had no idea how much my life would change. It’s been like living on a roller coaster. The first six months brought corticosteroids, pain medications, seizure medications, topical anesthetics, and sympathetic nerve blocks. Every new treatment sent me soaring with optimism; every failure plummeting into hopelessness and disbelief. Meanwhile, the symptoms progressed.

Within the year it spread to all four limbs. No longer able to work, I spent most of my time in bed and needed a cane to stabilize while walking. The only time I was pain free was while sleeping. As my physical abilities declined, it felt like pieces of my self were slipping away, as if I was in free fall into endless darkness. I was in disaster management mode.

Adjusting meant working through grief, depression, hopelessness, fear, and loss of control. With the help of a psychologist who specialized in pain management, I learned to face my feelings, my emotions, and my pain.

With ketamine infusion therapy, the full body burning, icy deep bone pain, and numbness gradually resolved. After a year of this therapy, the symptoms were limited to my foot and lower leg, my pain levels were lower, and it started to feel safe to inhabit my body again.

With my symptoms reduced, I worked on acknowledging and accepting my physical and emotional pain, turning them from detriments that froze me into assets that move me ~ compassion, empathy, appreciation, self determination. I gradually reclaimed activities, confidence, and hope. Today I am rarely pain free, but by restricting activities, I can manage.

I’m still coming to terms with the idea that this is as good as it’s going to get. But there are no guarantees; an injury might lead to a spread, ketamine infusion therapy might not always be available, symptoms might get worse. Accepting uncertainty has freed me to turn toward life, valuing what I can do, despite limitations.

Recently, I tripped over a fan left on the kitchen floor. I was turning around to put a cat food lid in the trash, and the next moment was flat on the floor. I hit the hard tiles with my full weight, falling on my hip, knee and elbow. Stunned, I picked myself up and moved the fan. Thankful that my hip wasn’t broken, I watched anxiously for bruising and swelling. Falling down was a wakeup call.

It was a reminder to take good care of myself, to take reasonable precautions. Not to be overconfident or push myself too hard. As much as I’m thankful for what I can do and try not to dwell on what I can’t, I can’t afford to overlook danger.

I’m grateful for being able to take the dog on a walk, do laundry, and cook dinner. I hope I’ll be able to enjoy these activities for a long time. Adapting to living with CRPS has meant modifying my hopes for the long term and goals in the short term. Living a simpler life, I’m satisfied with less and cherish everything more.

I don’t believe the adage that every cloud has a silver lining, that every hardship contains a hidden gift. But I do believe that with hard work, acceptance and fortitude, one can make the best of a difficult situation. It is an exercise in endless adjustments.

______

[1] http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm

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Authored by: Jenny Picciotto

There are 7 comments for this article
  1. Jean Price at 7:16 am

    Jenny…Your story is one of courage and inner strength…and is so like the many stories w’ve seen of people trying to keep going and keep hold of the positive in life. It’s so good to see yours and to know you are still invested in YOU! For me, life with everyday pain from multiple sources makes me think of what it would be like to ride a “manic depressive” rollercoaster! When we are a little better, we do all we can…only to usually be flattened and have to be housebound and bedbound for multiple days! Of course all the usual emotions fit right in to the stages, and the activity level we can muster…and we usually antipate the “crash and burn” phase even while we are up and about! That’s not negative…just part of the reality we’ve experienced time and again! As for “adjusting”… I think it’s an ongoing processs, one that is never static and never stops being an important factor to frequently assess. Balance is often overrated! And trying to keep a balanced life with pain can turn out to be an uncontrollable goal…so we adjust….sometimes multiple times within a day. Sometimes gracefully, sometimes not!! Maybe it’s my faith, or the length of time I’ve had pain…or maybe it’s my age and the experiences beforehand and what I learned from grief work…but I really have come to the place to ADMIT (although sometimes unwillingly!!) that, YES, there are silver linings to my pain! Some are the special people I’ve met, the time I’ve had to grow mentally and spiritually, learning to not sweat the little stuff, learning fuller compassion for others, seeing the real value of the little things in life, and even understanding the joy of temporary partial COMFORT is a plus!! These are things I likely wouldn’t have known WITHOUT pain, or wouldn’t have known to the depth and trueness that I do now. Yet, I seriously wouldn’t have voted to learn any of this from hurting endlessly…every day, every hour!! Just as importantly, though…I wouldn’t want to lose any of this either!! I KNOW MYSELF better, I like myself more, I like life better, and I’m closer to those I love and God because I’ve relied on them so much….and shared my joys and fears and triumphs and defeats with equal acceptance. I still have meltdowns, still lose my way, still don’t fully understand what I can do to make things better for myself…yet that’s true of most people…pain or not! And we just get up each day and do the best we can…our best…not by the standards of the world or even others in pain…but rather by our personal standards of what we feel up to and what we need today! Hard? Yes, but counting those blessings helps! And so,do articles like yours full of hope and reality! Thanks!

  2. Jenny Picciotto at 7:10 am

    Dear Paula, Sue, Keith, and Mike,

    Thank you for your comments. It never stops amazing me that no matter how unique our own situation is, we share the knowledge about how CRPS, fibromyalgia, MS, Parkinsons, cancer, and so many other conditions turn us upside down, forever changing our lives, and our relationships, especially with ourselves. Despite having different stories, there is so much we have in common, our voices are so similar, our experiences so deeply shared.

    I hope that by writing I can reach out to others and help them feel that there are people who understand what they are experiencing. The isolation of living with chronic illness can be overwhelming. I want people to know that they are not alone, and that there is hope, despite the pain and fear. And grief, yes, the grief. To turn into the grief, the piece of ourselves that we often stoically hide, which is so essential to the healing process,

    Rumi, a 13th century Persian poet and mystic said:

    “The wound is where the Light enters you.”

    I think he means that when we ache, when we feel the depth of pain and suffering, we are touched by an innate longing for life, and compassion for every living thing, which also suffers. We awaken to our vulnerability and see the miraculous tenderness of life.

    Whether your body heals or you remain physically challenged, I wish you well and whole in your spirit. Thank you for responding to my story,
    Jenny

  3. Richard Dobson, MD (Retired) at 3:10 am

    Jenny, I am glad to see your description of what life is like with CRPS and I am glad you get some benefit from Ketamine. I also note your description of your fall: “Just turning” and then you hit your knee hip and elbow.

    You describe a sequence of events that is quite common among people with chronic pain. The “pain” is far more than a bad experience. Chronic pain also heightens reflexes in many people with chronic pain. A heightened and more active flexor withdrawal reflex may be responsible for sudden elevation of the leg and a consequential fall. Your comment that you were “just turning” is one that I have heard from many people with chronic pain who suffered falls.

    I have attached a link to a article I wrote in Practical Pain Management a year ago. Note the report of hyperactive reflexes in people with mostly chronic back pain. I think it is almost impossible to get meaningful reflex testing in the presence of CRPS. Good reflex testing requires that the patient be relaxed…..and I have never seen a CRPS patient who could relax the painful limb with an impending tap of the reflex hammer…..just the nature of the disease. But falls in CRPS may still occur from hyperactive flexor withdrawal reflexes.

    Just be careful with twisting movements, especially if they involve twisting of the foot that started your CRPS.

    http://www.practicalpainmanagement.com/pain/other/co-morbidities/chronic-pain-falls

  4. Paula at 4:29 pm

    I have been living with RSD for 16+ years after having surgery on my left foot for Tarsal Tunnel Plantar Facitis. I waited 6 months and tried everything before I finally gave in to the surgery. I knew immediately after waking up from the anesthesia that something was terribly wrong, but it took 4 months before I was diagnosed and another year and a half before I got treatment.
    The RSD has now spread up the leg and into my back and I have not been able to work since 5/2000. I have tried many different blocks, trial spinal cord stimulator, which my body rejected and now my pain is being managed by medications and blocks here and there. I hate living like this. Some days I am OK, other days I can’t get out of bed and this is No Way to live. I use to have an active life. And RSD took it away from me.

  5. Sue Maharaj at 1:18 pm

    God bless u Jenny for having persevered and finally finding a way forward. U r not alone in this painful battle. Here’s my story. I was diagnosed with fibromyalgia after a severe rubella some 20 years ago. As an educator who loved teaching, I was a perfectionist in whatever I did. On the home front, I had to be the best mum to a son and set of twin daughters, all born within 3 years. My husband could never understand my constant flu like symptoms, chronic headaches, joint and muscle pains and this began to confuse physicians too. When all forms of treatment failed, they concluded it was fibromyalgia as there was no conclusive testing for same. I plunged into depression and was on antidepressants ever since. With chronic ulcers, hernia and eosophagitis, I tried my best to be well for everyone. Yes, I thought I was indispensible , a people pleaser and that I could save the world by pushing myself beyond limits and landing up in hospital all the time. In 2013, I sustained an injury on duty by lifting a defective security gate at school as I was always the first manager on duty. 2 discs in my lower spine displaced , the pressure of which caused a cyst on the sciatic nerve. From an emergency surgery for disc fusion with rods, bolts and screws, I was hospitalized 18 times to date. My life fell apart as I’m now reliant on my family and maid to care for me. Not even morphine or pethadine could ease the pain I underwent and still do. I’m now hypertensive, diabetic, gained 18 kgs because of sedentary lifestyle, depressed, have limitations in mobility and experience incontinence as the bladder cannot empty out completly. The fibromyalgia has worsened hundred fold. I battle to sleep at night and wake up at midday most times. Yes, half the day is lost. I’m on so many chronic meds , the side effects of which are even worse. It’s just a no win situation. The pain runs across the hips and down both legs. My left leg cramps suddenly and my right leg loses balance at times. Being a strong minded and courageous person, I’m reduced to such a painful state that my doctor says I’m now vegetating. Anti inflammatories work only for a few hours. I’ve tried alternatives and was defeated even more as the pain just persists and travels all over . When it reaches the headache stage, I place a hot water bottle on my head and face as the neuralgia gets triggered off. I’m now medically boarded and cannot function as I did previously. I’ve accepted my fate. Fibro fog has added to my woes . I forget names, faces, chores to do, appointments, leaving appliances on, my PIN number, my ID number, etc. I’m not giving up this fight. I make to do lists . I love my solitude as I shy away from people , shopping, functions, etc..it is all too much to process . No 2 days are ever alike so I take the bull by the horns and motor forward no matter the time or pace . Off all the therapies, adult coloring books and reading are my calming tools, not that I remember much of what I read! Life’s unpredictable. In a second, the rug can be pulled from under us. So dear ones, don’t be despondent. Keep your faith in the divine and may Gods blessings be upon all of us and the world I tried to save.

  6. Katie Olmstead at 9:46 am

    Oh, Jenny, I know this story. While my RSD/CRPS is milder, it has certainly changed everything in my life. I also find what I can do, within my limitations, esp things that are of service to my community, and dancing. Dancing? Yes, I pay for it with increased pain but I am out for the big joy.
    I have been learning to adjust, and keep relearning, for 18 years. This is probably as good as it gets. Grieving/reflecting/accepting….repeat.
    Along with that worry that I will fall and hurt my knee again, or break something, and how could I tolerate another surgery? Winter is coming. When it is icy, I just stay home. Cat food lids are harder to watch out for. I have two kittens who are highly entertaining, and quite the mood elevators.

  7. Mark Ibsen at 8:12 am

    Thank you Jenny for sharing this story.
    You seem to have adjusted.
    It looks like you grieve very well and move on as best you can.

    Glad for that,
    A lesson for the rest of us about how to reclaim our humanity
    When the unthinkable
    Unacceptable happens.