Why do I want to raise awareness of Complex Regional Pain Syndrome (CPRS) #rememberwhyyoustarted

Being honest it’s two-fold. I want to give meaning to some of the things that I do. I have wanted to raise awareness leading on to then raising money for charity for a while but have found taking the step difficult. One of the things I struggled with is choosing the right one. Not because I couldn’t find one that was deserving. I just couldn’t find one that would help my Dad and people who suffer the same condition, or conditions as it now for him.

My Dad suffers from something called Reflex Sympathetic Dystrophy (RDS) or as it is more commonly known now as Complex Regional Pain Syndrome (CRPS).

What is complex regional pain syndrome?

Complex regional pain syndrome (CRPS) is a chronic (lasting greater than six months) pain condition that most often affects one limb (arm, leg, hand, or foot) usually after an injury.  CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems.  The central nervous system is composed of the brain and spinal cord; the peripheral nervous system involves nerve signalling from the brain and spinal cord to the rest of the body.  CRPS is characterized by prolonged or excessive pain and changes in skin colour, temperature, and/or swelling in the affected area.

CRPS is divided into two types:  CRPS-I and CRPS-II. Individuals without a confirmed nerve injury are classified as having CRPS-I (previously known as reflex sympathetic dystrophy syndrome).  CRPS-II (previously known as causalgia) is when there is an associated, confirmed nerve injury.  As some research has identified evidence of nerve injury in CRPS-I, it is unclear if this disorder will always be divided into two types.  Nonetheless, the treatment is similar.

CRPS symptoms vary in severity and duration, although some cases are mild and eventually go away.  In more severe cases, individuals may not recover and may have long-term disability.

(go to https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Complex-Regional-Pain-Syndrome-Fact-Sheet for more information)

To try and give this a bit of a visual for people to understand, on the McGill pain scale RSD has been classified as at least 42 out of 50

The 5th November 2018 is Colour the World Orange day to help raise awareness of Chronic Regional Pain Syndrome (CPRS); this is now an annual event and it is to help raise awareness. It takes place on the first Monday in November. November is CRPS Awareness month #letsturntheworldorange #letsputoutthefire. I failed to start my fund raising before November last year, but I won’t fail again!

Here is why the ‘condition’ is one that is close to me. My Dad has suffered with it for over 20 years. I have seen the affects it can have on a person and how it can change them. Turn them from someone who used to drive over 2000 miles in a week to someone who even a slight bump on an uneven surface would send crippling pain throughout their body.

It was the 3rd March 1997 and as silly as this may sound, I can remember it like it has only just happened. A Monday, Newcastle vs Southampton was the Monday Night football match on Sky Sports. My dad came home unexpectedly, on crutches after a minor fall at work.

He went to the hospital to check out if there was any kind of fracture, but because of the swelling he was unable to have an x-ray so had the leg in a cast until the swelling had gone down. The swelling didn’t, what happened was his foot become very sensitive to even the slightest breeze and this would send severe shooting pains through his body. When he went back to the hospital he was told that he was suffering with a condition called Reflex Sympathetic Dystrophy (RSD), now known as Chronic Regional Pain Syndrome. When a person gets injured their sympathetic nervous system sends signals to the injured area to instruct the body to protect the area until it is healed, hence the swelling. The problem with RSD is that the messages from the brain don’t get ‘switched off’, so pain continues to be felt and the affected area stays swollen.

What has followed is a series of procedures which were meant to help but in fact has made his condition and his quality of life far worse.

The first procedure was a sympathectomy, and this was done in two parts over two weeks. After the first procedure all seemed well. The second part was to have chemicals injected which would reverse the pain messages from the brain. A side effect could be a SLIGHT NUMBNESS in the leg. What really happened has changed my dad forever. The slight numbness is in fact the whole left leg, leaving him wheelchair bound. It has also affected the pain messages, moving them from his ankle to his waist and left him in severe pain 24 hours a day. So now not only does he have CPRS, but it’s been intensified by the procedure and left him unable to walk. 

Next, he had a procedure called a dorsal column implant. This is like a tens machine where electrical impulses are sent through the body to help with pain relief. This implant helped, but as it was internal the batteries only have a certain lifespan, which is meant to be 5 years. It lasted 18 months because of the amount of use it was getting, this happens. So, he has had have further surgery to change the internal unit for an external one. This then allows changing of batteries on the external unit.

Following this, the next surgery he had to help deal with the pain was to have his spine opened up and some nerve endings burnt away to stop the pain messages being passed throughout the body. The surgeon said after the surgery that if he would have been able to perform the procedure earlier it could have been a success, but the pain messages had jumped on to different neural pathways. It was also discussed after this that my dad shouldn’t have any more procedures done as it only seems to intensify the pain he is in.

Nobody should have to live like this. From the groups that I have joined on Facebook and other websites that I have looked into, there doesn’t really seem to have been much more progress made. This now needs to change. So, I signed up for the Manchester 10k, 3 Triathlons and the Rochdale half marathon. All with the purpose of pushing me physically, but hopefully raise money for research into a cure.

Now the Manchester 10k has gone and I completed my first Triathlon yesterday, and still have 2 more to go. Along with 2 half marathons to do. Raising awareness starts now with more things to follow #letsputoutthefire #rememberwhyyoustarted