If you have read the about me part of this blog then you will know that it’s the relatively rare chronic pain condition I was diagnosed with in 2010. An early diagnosis is essential in CRPS and education was the key to my recovery. On that note here is my guide to CRPS:
What is CRPS?
Complex regional pain is a chronic pain condition, which can affect every aspect of the central nervous system from temperature control, motor and sense of touch. Previously it had other names included RSD (reflex sympathetic dystrophy) and causalgia. There are two types of CRPS, one involving nerve damage and one without. Its a condition that affects the nervous system and the way my brain processes pain. It normally affects one limb but it is know to spread to the other side in about 7% of cases. I simply twisted my ankle but it can be a more significant trauma like a fracture and while the initial injury did recover my brain had other ideas. My brain still acted like my ankle was still injured and went into protective overdrive.
Who is affected?
* 2-5 % of the population
* The average age is 40 but it is not uncommon in young adults.
* 20% in pediatric pain patients
* Women are affected more
The mechanics behind it is still unsure and there are several different theories to why is develops. In around 90% of cases there is a clear traumatic trigger such as a fracture, operation, strain or a simple sprain like in my case. The main pathophysiology shows changes in the way the pain in processed in the brain this including the way different body parts are represented in the brain. You also develop neglect like symptoms; similar to when you avoid thinking about something that you avoid. I remember doing a test where I have to recognize different pictures of feet and it took me twice as long to recognize a left ankle (which is where I have my CRPS). To learn more about the mechanisms behind pain read my blog post on Explain Pain.
The diagnosis is often clinical, there is no simple test that confirms whether you have the condition or not. Its normally diagnosis by ruling out other conditions as well as meeting course diagnostic criteria:
* The patient has continuing pain, which is disproportionate to any inciting event
* The patient has at least one symptom or sign affect different aspects of your nervous system including touch, motor power, temperature control and swelling
* No other diagnosis can better explain the signs and symptoms
The symptoms often get significantly worse the longer you have it is essential to have an early diagnosis especially the developing neglect symptoms.
While there are common symptoms like many conditions CRPS is on a scale and some people have all or only a select number of the symptoms.
• Allodynia + hypersensitivity – Pain on a non painful touch ( I had excruciation pain from cotton wool, I slept in a cast for a long time as the bed sheets touching me would wake me up.)
• Color and temperature change to the area (normally with the limb turning cold and blue or red)
• Burning Pain
• Shooting pain
• Stiffness and joint pain
• Numbness, tingling
• Increased hair and nail growth
• Dystonia – abnormal muscle tone.
You will normally always be under a pain management or pain clinic; this department should also include a rehabilitation department or will refer you to one. It is often a multidisciplinary approach and you may see many different consultants for different things.
• Nerve Block – where they inject anesthetic into the joint in your spine to try and reset the pain pathway
• Medications like – NSAIDS, corticosteroids, anti-convulsants, anti-depressants
• Ketamine infusions
• Spinal cord stimulation (is an implant that is placed into the spine that helps by using electric currents to help block the pain from the nervous system
In my case I was very lucky I was studying to do osteopathy and was able to have weekly free treatment, one of the tutor was even doing a pain management degree so knew a lot about it. Manual therapy can help in keeping the movement and improving the tone of the muscles that are affected. It is also able to help the compensation mechanisms of how your body is adapting coping with the injury. The main difference came from desensitizing program, which I got in the form of Graded Motor imagery.
Graded Motor Imagery:
Graded motor imagery is a treatment series that has three steps that works on desensitizing the painful area and reconnecting to the affected limb. The first stage is to recognizing left and right images on the affected area as I said before it took me twice as long to recognize a left ankle at the beginning. It is testing the representation of that area when you’re not really concentrating on it.
The next step is explicit motor imagery, which is where you are imaging and thinking about the movement or position rather than just identifying it. This can often be painful and a lot more hard work than you think but it work on the same way as when professional athletes imagine their golf swing or getting out the blocks in the 100m. The idea is to set of the pathway for those movements enough to connect with the neurotag but not enough to actually do the movement.
The last step is mirror box therapy, which has gotten a lot of press and has been in TV programs like House. It works looking into a mirror and seeing the reflection of a movement you do with your non-painful limb but it looks like your painful side is able to do the movement. Similarly to imagining a movement it works by activating the pain pathway enough without actually fully activating it as it looks like you are doing the movement rather than actually doing it.
The biggest difference and what put me back not he road to recovery was learning the pain mechanisms behind what was happening to my leg. You can read this is my post about Explain Pain. While I was on lots of medications had 4 surgeries in the first 5 months I kept going in circle. I really feel the key to my recovery was a combination of education and manual therapy. Once I was able to process why it was happening and what was causing it I was able to figure out ways to limit what was setting off the pain. It has taken years I’m not gunna lie it’s the biggest journey of my life and something I have constantly had to work on but all the baby steps though GMI then walking a bit more than starting to run and slowly building it up has paid off to some massive steps now.
I am now back to running the sport I always loved and now CRPS doesn’t stop me. I am even now able to train with an athletics club. I was given a 3 percent chance of ever having a normal life and I am convinced that education kick started me in the right direction. This is my story and experiences and I know others with this condition that have a very different experience.
I am happy to share more about my experiences and if anyone else has CRPS and wants to share their experiences I would love to them. Don’t be a stranger and get in touch!!