Written by Kelly Hodgkins for the RSDSA blog.
My journey with Complex Regional Pain Syndrome started in 2008. I experienced incredible pain in my wrist and it was interfering with my ability to use my right arm. I went to my general practitioner who asked my to see an orthopedic surgeon who diagnosed ganglions. I was operated on to remove them only to have the pain increase post-operation. I was then referred to a hand specialist in Johannesburg, who after a number of tests, scans and shots of cortisone, operated on me and removed 3cm of inflammation and prescribed six months of rest and rehab. I was on a cocktail of potent anti-inflammatories and pain killers, none of which made an iota of difference. My occupational therapist and physiotherapist worked tirelessly to regain my movement and try and relieve my pain.
Two years in I was in excruciating pain. I spent most days in bed or on the couch crying and was physically a wreck. I had managed to complete my degree by doing my exams orally as I could no longer write. I could not do any of my hobbies aside from spending time with Texie, because my horse is so amazing and does not need a rope or saddle to respond. I did my best to work, but it was a disaster. By divine intervention, an associate referred us to a neurologist who took the time to understand my pain and booked me into a hospital for two days of extensive testing. On the evening of the second night, a specialist physician / rheumatologist named Dr. Mohomed came and diagnosed me with Complex Regional Pain Syndrome (CRPS) formerly known as RSDS.
When I came into the care of Dr. Mohomed the relief was astonishing! Just to know what was wrong, that I was not dying or crazy and someone in the medical world believed and understood me was an answer to prayer!
Since my diagnosis, enjoying hobbies has become critical. I love my horse and spending time in the field with him as well as with my dog at home. Grooming both of them calms me and does great rehab on my hands. They do not need me to speak as they just know what I am feeling and my horse in particular adjusts his behavior to compensate for my arm and my pain. He guards the arm for me and takes responsibility for me when I am riding and ensuring the I do not fall off. Reading, movies and audio books are such great distractions and when I am having a good day. Knitting, cross stitching, piano and drawing all form part of my rehab.
Work wise, I have been limited to four hours a day, I regularly exceed this, but over time my clients, driven predominately by my mum (and co-member / boss), have adjusted to extending my deadlines, having meetings at my house and tailoring how we work around my condition. I was so fortunate as to get a mini iPad in January 2013 and it has rocked my world. I can do SO much more work SO much easier and apps have also improved my life.
Regular prayer, bible reading and soul searching have got me through the really tough times along with amazing friends and family. Having a support system that understands my needs and adjusts to my condition has been invaluable! I keep in touch with their lives through social media and instant messaging on days where talking or leaving the house is too much.
Living with a chronic pain condition like Complex Regional Pain Syndrome is challenging. I want to remain someone who has a balanced life but by the time work is over, I can feel exhausted. Doing anything, in addition, can feel more like a burden than a joy. Finding ways to keep the balance and enjoy my off time is an ongoing exercise and consistently adjusting to what I can do is something others really battle to understand.
My heart commits to doing something but I cannot always physically do it when I want.
If I could talk to myself the day I was diagnosed, I would share these three thoughts:
- Keep fighting for the life you planned: You are worth fighting for, keep going, through the pain and the fear, through the doubt and unknown. Keep asking questions, keep doing your own research and challenging your doctors. The right ones will understand you and work with, if they do not, look for a different doctor. I am now able to draw, play piano, ride my horse and work. My pain is vastly reduced and the future bright. I am so grateful God saw that to be my healing and know that it is not for everyone, but every story I read of courageous chronic pain patients highlights the power of fighting and staying positive.
- Build a team: You can not do it alone, and you cannot be everything for yourself. When you are the sick one, your perspective will be skewed. My mum was my warrior. She fought for me when I was not well enough to speak for myself, when I was tired, when the pain overwhelmed me or those treating me were not doing enough. She and I were supported by a network of friends and family who stepped up, prayed with us and loved us. My hœmeopath, specialist and psychologist, who were a part of my diagnosis, were amazing working together to help me find a balance. I added a fantastic biokineticist, Bryce Jackson, to this mix. We had to explore the right things to do, the research was scarce but, they listened, to everything I said from my chocolate cravings to migraine lifting exercises. I found support groups online and friends around the world to keep my spirits up. Find your tribe, find the people you connect with and who understand you.
- Look for the blessings: I had always been a Christian and committed to my faith but being in chronic pain required more from my relationship with God. I was filled with questions, I interrogated what I believed with new vigour and found new truths, new depths to my faith. I found celebrating my small wins and appreciating the little things made a world of difference. Getting to spend time in the sun with my horse, reading a book, spending time with friends, completing a work project, they were all stepping blocks. A day with a pain of seven not eight was amazing as was being able to drink milk again! God is now more real, more present than ever before. Through CRPS, He has taught me so much about Himself, myself and living a balanced life. I am so grateful for the lessons.
I still get frustrated, scared, angry, tired, lonely and sad. Having a chronic pain condition reorganizes your life without permission and makes planning tricky. It takes a lot of explaining, forethought and effort to stay well enough. But, eight years on, I look back and am amazed at all I can do now, how much research is available, how much I have gained from it and who knows what the next eight years will hold! So now I am also hopeful, excited, faith-filled and joyful.
Additionally, I find reading medical journals, magazines, blogs, websites and Twitter feeds helps me feel active and part of a broader community. It keeps me in touch when progress is being made and not as alone with the problem. Sometimes others with the same problem phrase it differently to me, cast a new light on it or just allow me to empathize with them
Since 2010, I have been balancing my meds and overall health programme. I take:
- Cymbalta 60mg once a day – around 7pm because it knocks me out and once asleep I can only really wake up 12 hours after I take eg: 7am. This is the most awesome drug, it has relieved my pain! It’s an anti-depressant which changes the chemical make-up of my brain (from which my pain emanates). It is generally effective so long as I don’t overuse my wrist, its effect diminishes when the barometric pressure shifts so I’m heavily affected by weather.
- Maxalt RPD for migraines which are a side effect of CRPS and triggered by hormone fluctuations
- Homeopathic Meds are essential, all the chemicals have harsh side effects: exhaustion, nausea, vomiting, headaches, dizziness etc and Dr Georgie Makris has managed to get rid of all of them through homeopathic medication and she even limits my use of the anti-inflams with drops.
- I also drink good, strong coffee and eat quality chocolate which makes me feel infinitely better on a bad day – both, again, change the brain chemistry and help relieve pain
- I am a vegetarian and have been for years but these meds put huge pressure on my liver and, whilst being fully functional, it can’t cope with certain foods so when I start going yellow-ish and feeling nauseous I cut back to a vegan no oil diet which immediately makes me feel better. I calorie count with the app My Fitness Pal which helps me balance my meals
Other parts of my programme include:
My biokineticist, Bryce Jackson, has created a programme that is ensuring I maintain what muscle strength and mobility I have as well as stabilising weak points. He works slowly and within my capabilities, extending them bit by bit, so as to avoid a flare-up of my CRPS. Charting my progress is very rewarding and it’s given me a sense of control and hope that I can prevent deterioration and restore what has been lost. It also keeps the rest of me fit and healthy.
My psychologist helped me gain perspective and come to terms with needing to accept the help of others and share the burden. She is also a great resource to lean on when it feels like I’ve leaned on my friends enough. Every time I lean on a friend it increases their worry about my condition and sometimes it helps to vent at someone else who has a bit more distance.
To close, here are a few things I find rejuvenating and make life with CRPS better!
Prayer, worship and bible study… as a Christian, I find it encouraging to frame my pain through the lens of faith. There is always a verse, song or prayer for how I am feeling and it guides my reactions. Finding Proverbs 31 Ministries was a gift. An online community focused on eradicating biblical poverty and giving real hope for real life is just what I need! Through their online bible studies, I have met so many wonderful, courageous women with whom I can do life. I have deepened my understand of the Word and I have had so many laughs and such fun on the journey. I really recommend finding authors (for me it is Lysa Terkeurst, Max Lucado and the like) who inspire and guide you and a community with which to share. When I can not hold a book or keep my eyes open, I find Summer Gross’ lectio divina wonderful relief as well as worship music from Kari Jobe and Ellie Holcomb. Guided meditation through the Word is great too!
Love… spending time with my mum, my friends and my fur-babies brings connection, comfort and gratitude. It makes enduring the pain worthwhile, helps distract from the pain and generally brings giggles and relief! My German Shepherd dog, Teddy, is always goofing about and ready with a hug! My American Quarter horse, Texie, makes me feel able and worthy, he is so majestic but so willing to listen to me. Whether I am sat upon the floor beneath his legs relaxing or out riding, he gifts me with a sense of security and joy! Mum and friends often listen and check in on me, but more than that, they love me for the person I am and not as someone who is ill. It is a fine line between being compassionate and making the chronically ill feel like a burden. I am so blessed to have people who achieve compassion and I encourage you to find your tribe of people who get you!
Exercise… Working through the programme created with my biokineticist and friend, Bryce, keeps my limbs mobile and prevents deterioration. The exercise also release endorphins which helps with pain relief. He has given me a mix of challenging exercises for good days and pain relief ones for bad days. The pain relief exercises have drastically reduced my use of migraine pain killers and anti-inflammatories. I have found that consistency is key, a little bit regularly keeps me feeling better.
Distraction… I love to be absorbed into a different world far from the pain and decisions and these three all help with that!
Books… I read and listen to them. I find using a Kindle is the best way to consume books because paper books hurt my hands. When I am having eye trouble or have a migraine, audible.com has great books to distract from the pain. Favourites include:
- J K Rowling’s Harry Potter series
- Brene Brown’s The Gifts of Imperfections
- Gail Carriger’s The Parasol Protectorate series
- Jane Austen’s six novels – particularly Pride & Prejudice
- Daisy Dalrymple series by Carola Dunn
- Emily Bronte’s Wuthering Heights and Charlotte Bronte’s Jane Eyre
- The Peabody series by Elizabeth Peters
- The Reluctant Detective series by Martha Oakley
- Christopher Paolini’s Inheritance Cycle
- Movies and tv series… I love watching mini series and movies I love, over and over again particularly interpretations of the classics by BBC, action movies and period dramas like Downton Abbey and Miss Fisher’s Murder Mysteries.
- Music… A broad range of music keeps my brain at peace, from rock ‘n roll to classics. Favourites include Ellie Holcomb, Queen, Chopin and Taylor Swift
- Really strong, good coffee… not much more to say than that! But really, I live on Nespresso, it energises and soothes and there is all sorts of research to support the goodness of good coffee! We have a local artisan bakery and cafe, The Upper Millstone, about 1km from home and it is a great retreat on a tough day!
Apps… My iPad has revolutionized my life, it is awesome and the one device I can use with ease. I use it for work, relaxation and community! The apps I have added to usual ones include:
- A pain monitoring app: find one that works for you! Mine helps me keep track of medication taken, how I am feeling and what I have done
- A fitness app helps me keep an eye on what I am eating, how much I am exercising and of I have a healthy calorie count
- Recognise helps retrain the brain and helps identify left from right which is really important for CRPS
Nature… beyond loving my fur-children, spending time sitting on the grass watching the grass grow held NO appeal prior to my CRPS diagnosis. As I have come to better understand my body’s rhythm, I have found little that restores the calm as spending time in nature does. I have crossed over so far as to actually garden a little now. My home of just over a year came with a magnificent garden, if unkempt, that has yielded so many new flowers, trees and bugs to make several turns in it a day a joy. Breathe the fresh air and just be, it is wonderfully tranquil
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