Living With Chronic Pain - A patient perspective
What if every single part of your body hurts and you have no explanation? What if it’s hard for doctors to determine your diagnosis? What if there is no relief in sight? Through FindMecure, Thomas Jarvis, a patient with Complex Regional Pain Syndrome, gives us a glimpse of what it is to live with chronic pain.
Chronic pain is a leading cause of debilitation and disability nowadays. It is not a symptom as most people consider it; it is a condition that few people talk about. Although there are dozens of conditions related to pain, there is one chronic pain that is widely under recognized and misdiagnosed. Complex Regional Pain Syndrome (CRPS), formerly known as RSD (Reflex Sympathetic Dystrophy, is characterised as one of the most severe levels of pain – 42 out of a possible 50 on the McGill University Pain Scale. It’s been proven to cause an intense feeling of pain regarded to be more painful than natural childbirth, amputation, or terminal cancer pain. And for many, the pain is constant.
Meet Thomas Jarvis
Tom is a patient with CRPS who has suffered from pain 24/7 for over seven years now. It all started while he was hiking. He fell and twisted his left ankle, broke his lower back, hit his head and broke a few ribs. A month later, he began getting shooting pains in his feet.
After trying a number of different therapies to no avail, he came across IAPO member, FindMeCure while looking for different options for treatment. Impressed by his willingness to manage his disease, 'we wanted to share his story with all patients in a similar situation.'
I received my CRPS diagnosis in December 2010 – almost a year after the injury, after many CT scans, MRIs and consultations with neurosurgeons. In May 2011, the head of Neurology at Boston Medical Center confirmed it a second time.
When my wife and I heard RSD/CRPS we wondered what it was as we had never heard of it. The reality sank in later after we researched on the disease.
I feel burning sensation, stabbing pain and coldness. I also have discoloration on my left foot. It is hard to explain as words are not enough.
I have been on different treatments whose help has been too little or no avail – two spinal cord stimulators, eleven spinal cord injections and that was for over a 2-year period. I have also tried alternative therapies, physical therapy, and acupuncture. At this point, I am still desperate as pain is continuous.
The worst thing
The loss of the life I once knew - driving, travelling, boating, hiking, fishing, cooking, being independent and not having to rely on my wife to do everything and have FUN.
Until recently, I was not familiar with clinical trials but after reading on them, I believe they can give HOPE and help people like me in NEED. I therefore want to be a part of such a project, that I believe can help me lead a better life without pain.
I can only HOPE medicine will find a cure...I hope that the clinical trial I applied for through FindMeCure is the answer. Please keep up the good work. So many of us are suffering from this disease that overpowers life. We are looking for HOPE and can only hope clinical trials will be the answer.
Where to find HOPE
It has been difficult to cope but the love and support from my family has given me HOPE...that is what keeps me going with a pain level above 10 every hour of the day.
To all patients out there who have been diagnosed with CRPS, I would advise them: find a doctor who can help. Please bear in mind that there are very few who understand this disease as it is quite difficult to diagnose.
If you are experiencing any kind of chronic pain, or CRPS in particular, you can search the nearest clinical trial to you at www.findmecure.com. Just type your exact condition, location, gender and age.
Start by asking your doctor about it or do your own research.