RSD Interview #35 - With Richard Kippax

HOW AND WHEN DID YOU GET RSD?
In January 2010, I was walking across the landing and tripped over a laundry basket, landing heavily on my right knee. Instead of going to the hospital to get it checked (which, in hindsight, I should have done), I just took more and more painkillers. After two weeks and the swelling / pain increasing, I went to casualty to get it checked. They x-rayed the knee, found some damage to the knee cap and referred me to the Orthopedic Surgeon. This appointment took a while due to adverse local weather conditions. Upon initial orthopedic appointment, the consultant I was seeing did not want to do anything with the knee and immediately transferred me to his colleague, who specialized in knees. I got sent for more x-rays, ultrasound scan and MRI. The ultrasound scan showed I had a DVT in my calf, so I was unable to do physic, etc, until blood thinning treatment was finished. With increased swelling and limited movement, an ulcer appeared below my knee cap. This stopped the surgeon from being able to do an arthroscopy and manipulation during this time, as I was under a pain doctor for Fibro and Myofacial Pain Syndrome. We noticed that I was losing hair growth on one side of my leg and the skin was discolored. CRPS was diagnosed in May 2010 and pain doctor advised Orthopedic Consultant not to proceed until pain was under control...still waiting.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
My right leg is classed as a 'wooden' leg, as it has no movement and there is severe muscle wastage. This limits my mobility and I am now wheelchair bound. Being a tall man, it proves a challenge getting into vehicles with no leg movement. I am unable to work due to pain and spread (to left hand, left ankle and mouth). It’s hard having to assess trips outside of the home- noise, weather, vibration, light etc. There’s a massive sense of loss, looking back on what I used to be able to do with the children. And it has affected my relationship with my wife, who is now my main carer. When in a major flare, I can’t eat what I want or drink what I want, as tongue is very painful, split, etc. Living as an invalid in another room from wife, and having the house adapted to suit my needs, makes the condition seem VERY permanent.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
Family and close friends have been wonderful. We aim to educate people around us on CRPS, and my wife has a good support system on Facebook.
GP and Pain Consultant have tried their utmost to help but some of the solutions can not be tried, due to costs or lack of proof of success.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
No

HOW HAVE YOU RE-INVENTED YOURSELF?
I learned the hard way concerning pacing and adapting to situations. I set myself lower goals to reduce disappointment of failure.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
I have spent a lot of time with my kids and have watched them grow up to become caring individuals. Also, I understand how disabilities are frustrating to people.

WHAT THINGS DO YOU MISS THE MOST?
Simple everyday tasks, like:
Driving.
Hopping into the shower.
Popping to the shops.
Going to work and socializing.
A good nights sleep!!!!
Not having to think about what to eat.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
I have been diagnosed with pain conditions prior to CRPS, but their effects are overshadowed by CRPS. I am still a caring human being and, even if I am chatty, etc, I am still in constant burning pain and very depressed.