Jamie has lived with CRPS for over 6 years. For some, this challenge may seem like a holiday of a lifetime, for Jamie it is the ultimate challenge of overcoming the impossible and showing that nothing is out of your reach.
Overview – What is CRPS?
Complex Regional Pain Syndrome (CRPS) is a form of chronic pain that usually affects an arm or a leg. CRPS typically develops after an injury, a surgery, a stroke or a heart attack. The pain is out of proportion to the severity of the initial injury. For Jamie the illness affects both legs and in fact everything from the L2 vertebra down.
Complex Regional Pain Syndrome is uncommon, and its cause isn’t clearly understood. Treatment is most effective when started early. In such cases, improvement and even remission are possible. However, in the case of Jamie the diagnoses was delayed by 13 months. The reason behind this was due to doctors not understanding the condition.
Signs and symptoms of Complex Regional Pain Syndrome include:
Continuous burning or throbbing pain, usually in your arm, leg, hand or foot
Sensitivity to touch or cold
Swelling of the painful area
Changes in skin temperature — alternating between sweaty and cold
Changes in skin colour, ranging from white and mottled to red or blue
Changes in skin texture, which may become tender, thin or shiny in the affected area
Changes in hair and nail growth
Joint stiffness, swelling, and damage
Muscle spasms, tremors, weakness and loss (atrophy)
Decreased ability to move the affected body part
Symptoms may change over time and vary from person to person. Pain, swelling, redness, noticeable changes in temperature and hypersensitivity (particularly to cold and touch) usually occur first. Jamie honestly thought that the symptoms were the after-effects of the shingles he had in November of 2013.
Over time, the affected limb can become cold and pale. It may undergo skin and nail changes as well as muscle spasms and tighten. Once these changes occur, the condition is often irreversible. Unfortunately, this is the situation for Jamie and many others. Sometimes the spasms are so bad that Jamie has been known to burst blood vessels in his eyes. Jamie has also in the past, unfortunately, urinated and even defecated during one of these spasms.
Complex Regional Pain Syndrome occasionally may spread from its source to elsewhere in your body, such as the opposite limb. Jamie started out just on his right leg but very quickly it spread to his left. The result was almost sudden and he was left with neurological paralysis.
In some people, signs, and symptoms of complex regional pain syndrome go away on their own. In others, signs and symptoms may persist for months to years. Treatment is likely to be most effective when started early in the course of the illness. For Jamie and his condition due to the time of delay in diagnoses and treatment his CRPS will never go. However, with treatment and pain management he has learned several methods to control the pain.
One of those methods is massage and regular sports massage treatment at the point of most weakness. For Jamie, this is in his lower back, his legs, and his feet. Charlott is a qualified massage therapist and her continual treatment every other day has played a massive part in Jamie’s recent success of climbing Ben Nevis, Snowdon and several other UK mountains.
When to see a doctor
If you experience constant, severe pain that affects a limb and makes touching or moving that limb seem intolerable, see your doctor to determine the cause. It’s important to treat Complex Regional Pain Syndrome early.
The cause of Complex Regional Pain Syndrome isn’t completely understood. It’s thought to be caused by an injury to or an abnormality of the peripheral and central nervous systems. CRPS typically occurs as a result of a trauma or an injury.
Complex Regional Pain Syndrome occurs in two types, with similar signs and symptoms, but different causes: Jamie had shingles in November of 2013 and in January of 2014 his condition had deteriorated to the point of paralysis.
So what are the two types?
Type 1. Also known as reflex sympathetic dystrophy syndrome (RSD), this type occurs after an illness or injury that didn’t directly damage the nerves in your affected limb. About 90 percent of people with Complex Regional Pain Syndrome have type 1.
Type 2. Once referred to as causalgia, this type has similar symptoms to type 1. But type 2 Complex Regional Pain Syndrome follows a distinct nerve injury.
Jamie has Type 1 suffered after shingles and if you have ever had this illness you will understand the pain that it causes.
In many cases of Complex Regional Pain Syndrome occurs after a forceful trauma to an arm or a leg. This can include a crushing injury, fracture or amputation.
Other major and minor traumas — such as surgery, heart attacks, infections, and even sprained ankles — can also lead to Complex Regional Pain Syndrome.
It’s not well-understood why these injuries can trigger Complex Regional Pain Syndrome. Not everyone who has such an injury will go on to develop Complex Regional Pain Syndrome. It might be due to a dysfunctional interaction between your central and peripheral nervous systems and inappropriate inflammatory responses.
If Complex Regional Pain Syndrome isn’t diagnosed and treated early, the disease may progress to more-disabling signs and symptoms. These may include:
Tissue wasting (atrophy). Your skin, bones, and muscles may begin to deteriorate and weaken if you avoid or have trouble moving an arm or a leg because of pain or stiffness.
Muscle tightening (contracture). You also may experience tightening of your muscles. This may lead to a condition in which your hand and fingers or your foot and toes contract into a fixed position.
Jamie has already started to experience some of these symptoms and in order to try and keep them at bay he keeps as active as possible so that he is not left unable to walk or move his limbs. This will be the final outcome for Jamie. he has come to terms with this , the question is all about time. If he can prolong the symptoms for as long as he can then he will prolong his value of life.
These steps might help you reduce the risk of developing complex regional pain syndrome:
Taking vitamin C after a wrist fracture. Studies have shown that people who took a daily minimum dose of 500 milligrams (mg) of vitamin C after a wrist fracture had a lower risk of Complex Regional Pain Syndrome compared with those who didn’t take vitamin C.
Early mobilisation after a stroke. Some research suggests that people who get out of bed and walk around soon after a stroke (early mobilisation) lower their risk of Complex Regional Pain Syndrome.
Everest – But why?
It was always Jamie’s dream to climb Everest. As a young boy, He used to pretend that he was out in the wilds going for the summit. When he first fell ill this dream seemed impossible. He missed walking the most, not going to the shops but being outside and walking in the hills, the point that he felt most alive.
Jamie climbed several mountains in a wheelchair just so he could gain back something of his past passion. he had by this point accepted the current condition and the situation of his life. This was not who he was and he knew he would have to work very hard to get back to the person he wanted to be.
Jamie has completed challenge after challenge raising more than £250,000 for charities based in and around Wales. He wanted to show the world that if you put your mind to it then nothing is out of your reach.
My Physiotherapist asked me at the first ever session that I needed a goal, “what is it?” she asked.
My Reply was simple “Everest”
She smiled and said, “let’s get you walking across the room first.”
So Crowd Funding his way to his greatest challenge yet. The company Evertrek has been a key player in Jamie’s fund raising by supporting and sponsoring his Trek. This means every penny raised after all necessary costs will be going to the charity.