Kelly’s CRPS Journey
As a charity we often share patient journeys to show you how other patients cope with their CRPS as well as to provide support and encouragement, whether you are a Complex Regional Pain Syndrome (CRPS) patient or a loved one. This patient study or patient CRPS journey is from Kelly from South Africa whose Complex Regional Pain Syndrome (CRPS) journey began in 2008.
This is Kelly’s CRPS journey in her own words:
My journey with Complex Regional Pain Syndrome (CRPS) 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 the GP who asked my to see an orthopaedic surgeon who diagnosed ganglions. I was operated on to remove them only to have the pain increase post-op. I was referred to a hand specialist in Johannesburg, who after a number of tests, scans and shots of cortisone, operated on me removing 3cm of inflammation and prescribed 6 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.
2 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 couldn’t do any of my hobbies aside from spending time with Texie, because my horse is so amazing and doesn’t 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 hospital for two days of extensive testing. On the evening of the second night, Dr Mohomed came in. He is a specialist physician / rheumatologist and he diagnosed me with Complex Regional Pain Syndrome (CRPS) formerly known as Reflex Sympathetic Dystrophy (RSDS).
When I came into the care of Dr Y Mohomed, the relief was astonishing! Just to know what was wrong, that I wasn’t dying or crazy and someone in the medical world believed and understood me was an answer to prayer!
Since 2010, I have been balancing my meds and overall health programme. I take:
- Cymbalta 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.
- Naramig for migraines which are a side effect of CRPS and triggered by hormone fluctuations
- Homeopathic medicines are essential, all the chemicals have harsh side effects: exhaustion, nausea, vomiting, headaches, dizziness etc and Dr G Makris has managed to get rid of all of them through homeopathic medication and she even limits my use of the anti-inflammatories 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 medications 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 UP from JawBone which helps me balance my meals
Also part of my programme:
- 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.
Enjoying my 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 don’t need me to speak, they just know what I’m 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’m riding ensuring I don’t fall off. Reading, movies and audible books are such great distractions and when I’m having a good day, knitting, cross stitch, piano and drawing all form part of my rehab.
Work wise, I have been limited to 4 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.
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 with 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 empathise with them.
This was Kelly’s CRPS journey. Thank you Kelly for taking the time to share your Complex Regional Pain Syndrome (CRPS) journey. Not only is Kelly helping to raise awareness of this debilitating chronic condition, but she is also providing others with support and encouragement. You’re not alone with your CRPS, we’re here to help you through your journey. Why not share your personal CRPS journey with us? Visit our blog on sharing your CRPS story which will tell you all the details of how to send it to us.
Last Updated: 01/03/2018