Complex Regional Pain Syndrome (CRPS)
The following blog is all about Complex Regional Pain Syndrome (CRPS). It is a condition I live with and have done so for five years. You may recognise a lot of the text from a previous blog I wrote called; My Life With CRPS and Why Everest.
So why am I repeating an already established blog? Simple, my life is not only about being an adventurer or a speaker. Nor is it only about being an adaptive athlete or ambassador for life.
It is my life with a condition so misunderstood that the NHS has even described Complex Regional Pain Syndrome (CRPS) as the most misunderstood neurological condition known.
What is Complex Regional Pain Syndrome (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 me, 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 my case, my diagnosis was delayed by 13 months. The reason behind this was due to doctors not understanding the condition. In fact the first doctor I spoke to did not actually listen to what I was saying. It felt to me like he didn’t care or even believe me.
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
- 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
- Slight 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. I honestly thought during this period that the symptoms were the after-effects of the shingles I had in November of 2013.
Over time, the affected limbs 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 myself. Sometimes the spasms are so bad I have been known to burst blood vessels in my eyes. I have also in the past, unfortunately, urinated and even defecated during one of these spasms.
Can it spread?
Complex regional pain syndrome occasionally may spread from its source to elsewhere in your body, such as the opposite limb. I started out just on my right leg but very quickly it spread to my left. The result was almost sudden and I was left with neurological paralysis. How this occurred was my brain had registered the severity of the pain and shut down the signals to the effected area.
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. My condition due to the time of delay in diagnoses and treatment will never go however with treatment and pain management I have learned several methods to control the pain.
One of those methods is massage. Regular sports massage treatment at the point of most weakness can be very effective. For me, this is my lower back, my legs, and my feet. My partner Charlott is a qualified massage therapist and her continual treatment every other day has played a massive part in my recent success of climbing Ben Nevis.
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: I had shingles in November 2013 and in January of 2014 my 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.
I am 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, the 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.
I have already started to experience some of these symptoms and in order to try and keep them at bay I keep myself as active as possible to that I am not left unable to walk or move my limbs. This will be my final outcome, I have come to terms with this. If I can prolong the symptoms for as long as I can then I prolong my 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 mobilization after a stroke. Some research suggests that people who get out of bed and walk around soon after a stroke (early mobilization) lower their risk of complex regional pain syndrome.
If I wake up and I am not in pain! My first question is, Have I died?
“Class aptent taciti sociosqu ad litora per conubia nostra, per inceptos himenaeos .Aenean non turpis vitae ligula tristique sagitt isras varius erat pulvinar eros pretium”
Other Facts and links
Every year it is estimated that 17,000 people form Complex Regional Pain Syndrome (CRPS) and yet it is still so misunderstood. Why?
Well the good new is things are improving. Specialists in the subject can be found and this is the first step to wide spread understanding knowledge development and posible education.
There are centres now such as Royal National Hospital for Rheumatic Diseases in Bath. Here you will find advice and a level of support.
Burning Nights is a charity that will support you and guide you on your journey of living with Complex Regional Pain Syndrome (CRPS)
Other links you may want to research is CRPS UK
You can also find a lot of information on the NHS website even though the doctors may not be able to offer you much information themselves.
I have lived with this condition now for 6 years. I have faced anger for not being able to understand why this is happening to me. Overcome challenges faced by the condition. Looked at many ways to adapt my life so I can live a full existence.
The hardest challenge is facing the fact that I won’t get better and in fact there is a strong chance my condition will deteriorate over time. I have kept myself as active as possible, played sports and even pushed my limits as far as I have been able to.
I have met amazing people along the way like Jamie Gane who have also had to overcome the same challenges. Jamie also had to have his leg amputated. An operation that he did not take lightly but at the same time it has changed his life for the better.
I have been able to connect with people like Sara Beach who’s brother made a fantastic video all about her life with CRPS. You can also view the video in her blog with the above link.
Life with CRPS is not easy, the pain is like nothing else, the mental pressure is intense but the knowledge is growing and more and more people are learning and understanding the condition. This may not feel like it helps you but what you need to know is that you are not alone and there is a whole community out there that will answer any questions you may have. If you want to ask me anything please feel free to do so.