The month of November is CRPS Awareness Month.
For anyone who doesn’t know, CRPS stands for Complex Regional Pain Syndrome. In case you have not guessed the awareness colour for CRPS is orange, hence the orange throughout this blog. CRPS is a debilitating chronic pain condition that is caused by damage to the pain receptors and the nerves. Typically, the condition is brought on following an injury (but this isn’t always the case) which means that the previously injured area or the affected area pain receptors send pain signals to the brain even after the injury is healed. This results in a variety of symptoms in the affected limb and the body in general.
Symptoms of CRPS include:
Skin changes i.e. Discolouration, Hypersensitivity, Mottled Skin, Swelling, Blotchy Skin, infections, temperature changes (hot or cold)
Shortening of muscles and tendons
Loss of movement
Hair Changes (Loss, Growth, Brittleness)
Nail Changes (Loss, Growth, Brittleness)
Spreading from the initial affected area
Internal Organ Spreading
Bone Mass Reduction
Headaches and Migraines
These are only some of the symptoms that affect people fighting CRPS. It has been named the most painful condition known to man after being rated 42 out of 50 on the McGill Pain Scale. Rating it above cancer, limb amputation and child birth.
There is no cure for Complex Regional Pain Syndrome and most suffers can’t find any form of relief from this debilitating condition. The most regular forms of treatment are physiotherapy, occupational therapy and pain relief. For most people battling CRPS these things do not help and even high doses of strong pain relief, including opiates, rarely help and if so the help they provide is almost pointless.
My CRPS Story
I am a suffer of CRPS, I was diagnosed almost 5 years ago at the age of 15.
CRPS has impacted my life quite significantly since diagnosis, however it is not my primary condition.
My CRPS came about without injury and started in my left wrist. The pain was agonising, an intense burning pain. I have always described it as being deep rooted, it felt like it was coming from deep within my bones. When I began to suffer with symptoms of CRPS we had no idea what was wrong with me. As I said the pain was agonising, my wrist was throbbing, it become mottled and discoloured a purple, blue colour. It was swollen and ice cold.
After a few months of back and fourth at my GP surgery with no luck, no answer or relief from the pain, I was due to be seen by my rheumatologist. When I saw my rheumatologist we were discussing how things were going and I told him about the problem with my wrist, which is when I was diagnosed with CRPS.
He told me that CRPS often spreads and although mine hadn’t been brought on by injury if I were to injure myself it was possible it could spread. Unfortunately, he was right. My CRPS has spread to my left foot, middle to the left side of my foot specifically; following a metal pole falling on my foot. It also spread to my knee after tearing a cartilage (how this happened, we also don’t know). I also suspect that after subluxing (partially dislocating) my shoulder in September that some of the pain I am experiencing is due to my CRPS.
My CRPS also affects areas of my body that haven’t been specifically impacted by CRPS. For example, I am extremely hypersensitive; my skin can be extremely painful to touch. This is in the areas affected by CRPS but also the tops of my arms and my cheeks. Sensitivity can appear anywhere in my body however; these are the areas that are always affected. Since subluxing my shoulder it too is extremely sensitive to touch as this is the usual way my body reacts to injury.
My CRPS affected limbs also become extremely cold to the point where it is very difficult to bring them back from this point. Since my CRPS diagnosis I have been unable to properly control my body temperature. When I was young I was always warm, I rarely needed extra layers. However, now I become cold very easily and randomly at times. Once I am cold, I am cold. It is extremely difficult to come back after a certain point. This means that I am often wearing lots of layers, particularly when I was in school. I frequently have a blanket with me especially when using my wheelchair as a lack of movement leaves me quite cold and more vulnerable to the cold. In the last two years I have realised that I am becoming more sensitive to heat in the summer time. However, I do not suffer from many hot spells otherwise.
Due to my CRPS I can sometimes do things differently and have learnt to do things differently in the past. When my wrist flares I find it difficult to use my wrist and my arm below the elbow. This meant that I learnt to undo bottles and packets differently. I learnt to do my make up right handed as I am a “lefty” although it is important to me now it was extremely important to my 15-year-old self. Due to sensitivity and pain I am unable to wear a bracelet on my left wrist at all, I am only about to wear one on my right wrist for a few hours depending on tightness and pain levels that day. Some days I am unable to do my left shoe up too tight due to pain and unmanageable sensations, other days I can’t get my shoes on at all.
I have learnt to adapt daily activities to try to manage life with CRPS and although it may not be noticeable to an unknowing eye it affects my life on a daily basis. What if someone touches me? What if that touch hurts? How bad will the pain be? How long will the pain last? Living life this way is exhausting and I know how tiring and excruciating other CRPS suffers find the condition.
Therefore, I ask you to help us raise awareness for this excruciating and life alerting condition. Please like, comment and share this blog and help support those of us with CRPS.
You can view a video here made by my friend Emma who put together a CRPS awareness video with several others including myself from the UK, America, Australia and Africa. Please help us share this video to raise awareness.
If you would like to know more about CRPS you can visit the Burning Nights CRPS website. This is an extremely informative website by the fully registered UK charity.