You Don't Look Sick: 'My arm hurts so much I considered having it amputated'
Many people live with invisible illnesses – conditions that cause symptoms that affect their every day lives but on the outside, they look well.
You Don’t Look Sick is our weekly series looking at what it’s like to live with a hidden condition.
Patrick Day-Childs, 26, from Southampton, has complex regional pain syndrome around his right elbow.
CRPS is a condition where the body reacts abnormally to an injury. The pain is much more severe and long lasting than is normally expected from a minor injury.
It causes a mix of stinging, stabbing and burning as well as tingling and numbness. There may also be changes to the colour of the skin. It is usually confined to one limb but it can spread to other areas of the body.
When CRPS develops, changes in temperature and even the lightest touch can lead to extreme pain.
Patrick says it’s difficult to pinpoint the exact point where the CRPS developed but he believes it happened after he was assaulted and his elbow was stamped on when he was around 14 years old.
Now over 10 years on, Patrick still struggles with chronic pain in the area and finds it difficult to use his right arm.
The condition is rare and diagnosis is often difficult. There is no test for CRPS but it is diagnosed through matching symptoms and eliminating other conditions.
Patrick says he struggled to get a diagnosis as his doctor thought he was exaggerating the pain he was feeling.
He explains: ‘Getting diagnosed was very bittersweet. The doctor I was seeing didn’t seem to think there were any issues with me, so it was good to have a proper diagnosis and confirmation there was something wrong, but knowing that there isn’t anything that’ll fix it was difficult to accept.’
Treatment for CRPS is still limited and the condition is not well understood. Patrick has even considered amputation because of the lack of other treatment options.
‘I’ve just had to learn to live with it,’ Patrick says. ‘I’ve spoken to others online but because it’s a pain based condition but there hasn’t been much in the way of help.
‘I’ve looked at having the limb replaced with a prosthetic but there are quite a few cases of people that have tried that and still felt the pain from the condition due to how the nerves work.’
He has learnt to adapt and learn how to do tasks without using his arm – but it still impacts on his everyday life.
He says: ‘I don’t like the idea that my condition controls me.
‘I’m also stay-at-home parent to my kids because all my work can be done from home, so I try to put in all my effort to taking them out to the park or somewhere.
‘This is where it can become a massive problem. My condition can be made much worse by sudden temperature changes or if it’s too hot/cold.
‘When we use play equipment if it’s metal then it retains temperature differently to plastics and rubber. Sometimes it’ll cause massive tremors in my arm, and it’ll hurt like crazy.
What are the symptoms of CRPS?
The main symptom of CRPS is chronic pain.
The pain is usually triggered by an injury but is more severe and long lasting.
It may feel like a mix of burning, stabbing or stinging. There may also be tingling and numbness.
The skin in the affected area can become very sensitive.
Even the slightest touch, bump or change in termperature can cause intense pain.
Other symptoms can include:
Strange sensations in the effected limb
Alternating changes to the skin
Hair and nail changes
Joint stiffness and swelling
Tremors and muscle spasms
Difficulty moving the affected body part
Small patches of fragile bones in the affected limb.
‘The condition is very random, I can sometimes fall over, smack my arm and be fine, but then my jacket rubbing gently against my elbow can feel like someone just set it on fire.
‘It also means I lose grip a lot, so I’ll sometimes just drop things without being aware that it’ll happen at all.’
There are many aspects of everyday life that we take for granted that Patrick struggles with because of CRPS.
He says: ‘If you consider that my condition can be agitated by metals, then think about heading out to a supermarket and you’ll realise just how much of an issue that can be: ATM, disabled switches for doors, handles, ordering a cold drink, even money can cause me problems.’
But the biggest problem is the chronic and persistent pain that he faces.
‘It’s constant – it stops me being able to properly concentrate. It’s always there from the second I wake up to the second I fall asleep. It’s really exhausting,’ he says.
‘The condition affects my right arm, but causes so much pain that using any limb is a huge deal of effort, it feels like I’m dragging blocks of lead just to lift my legs and arms usually. And it can spread.
‘There have been a few occasions where I’ll have a sudden familiar shock of pain in a different limb, but luckily it isn’t constant like it is in my right arm.
‘Because of this, I’m extremely anxious about using anything metal, any kind of trigger in either arm isn’t ideal.’
He says that because his disability is not immediately obvious to strangers, he has faced judgement, especially when using public transport.
Patrick struggles to stand on trains as touching metal triggers the intense pain in his arm. He admits he tries to avoid travelling on trains or buses for that reason.
He explains: ‘I’d say the most notable incident was on a train a few years back. I had booked four seats so I had extra space for my arm. Someone ripped up the reservations and put them on a pile in the middle of the table.
‘The other notable time was I used a disabled seat on a train and someone pointed out it’s for people with a disability, I moved but trying to get out of the seats on trains is difficult because I can only use my legs and one arm.’
Patrick wants to raise awareness of conditions like CRPS that many people haven’t heard off and don’t understand.
He says: ‘I think the world is becoming more acceptable and understanding to some conditions like autism. However, the lesser known conditions should be brought to light too.’
How to get involved with You Don’t Look Sick
You Don’t Look Sick is Metro.co.uk’s weekly series that discusses invisible illness and disabilities.
If you have an invisible illness or disability and fancy taking part, please email [email protected].
You’ll need to be happy to share pictures that show how your condition affects you, and have some time to have some pictures taken.
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