The impact of CRPS: the most debilitating pain disorder in the world

Imagine waking up one day, and the simple act of feeling the warmth of sunlight on your skin sends excruciating CRPS pain through your body. Imagine, with every step you take, it feels as if you’re walking on shards of glass, and the gentlest breeze becomes a tormenting flame against your skin.
Now, picture living with this relentless agony day in and day out, while the world around you remains blissfully unaware of your suffering. Today, on Colour The World Orange Day, I want to shed light on the reality of Complex Regional Pain Syndrome (CRPS). For many of you this might be the first time you hear of this disorder. However, for the people amongst us dealing with this pain on a daily basis, the 6th of November is an international CRPS awareness day that is very important to us. Welcome to the hidden world of CRPS, a disorder that leaves no room for anything else, where the CRPS pain levels are, quite literally, off the charts.

Infographic for Colour The World Orange for CRPS - CRPS awareness day on 6 November 2023.

What is CRPS, or Complex Regional Pain Syndrome?

CRPS is known as the most painful disease one can have. It can occur to anyone, usually after a fracture, surgery or other medical injuries, however it can also come out of the blue. For most people, it impacts one of their limbs or other extremities of the body (feet, hands, fingers, etc), however it can also impact someone’s whole body or spread throughout your body or other limbs. There are a few key symptoms that will tell you if you have CRPS: chronic pain (which is pain >3 months, that is not in line anymore with the event that caused the pain) is the most obvious one. But keep on reading if you want to know more symptoms!

What happens in your body?

First things first, a bit of a background on what CRPS actually is. This is the way I usually explain it to other people: CRPS is like having a security system set up in your house that goes off when things happen that you didn’t need to be alerted about (eg: wind blowing or a bug flying around, instead of ONLY when a fire breaks out or a burglar trying to break into your home).

Or in other words: stimuli that should not cause pain (wearing a sock, wind blowing against your skin) causes your nervous system to react by sending signals to your brain. Your brain then (wrongly) interprets that signal as a “threat” and warns you by giving pain, flare-ups or any other type of the common CRPS symptoms. Basically, your body/brain is working “too well”. 

Differences in the brain between chronic pain brain and a healthy brain. It shows that people with chronic pain or CRPS have many activated parts of the brain, whereas a healthy brain does not.

What are common symptoms?

Prolonged pain is the most obvious one: this means “pain that is not aligned anymore with the actual event causing the pain, and lasts for longer than 3 months”. But there are other symptoms that are (unfortunately) not talked about enough in my opinion. 

Common symptoms (& talked about):

  • Discolouring of your affected body part (for example: turning purple/red/black of your limb)
  • Swelling and/or stiffness
  • Temperature dysregulation (very hot or very cold limb)
  • Changes to skin, hair & nails
  • Decreased ability to move the body part

Other symptoms that people talk about less:

  • Brain fog
  • Extreme fatigue
  • Visual disturbances
  • Issues with your digestive system
  • Issues regulating body temperature
  • Poor concentration
  • Sound/light sensitivity
  • And so much more

CRPS is the most painful disease out there. On the McGill Pain Index the pain is stated as being higher than amputation or giving birth without sedation.

McGill Pain index - the CRPS pain scale that indicates how much pain CRPS patients have. It has an orange border and shows a scale of 0-50, with CRPS being at 42.
Photo credits: Burning Nights CRPS

How many people in the world have CRPS?

You know I love a little bit of statistics, so let me share some numbers with you: 

  • CRPS occurs 3 to 4 times more often in women than men. (Source)
  • “Only” between 5 – 26 people per 100,000 people per year get CRPS. This makes it fall under the “rare diseases” category. (Source)
  • CRPS usually starts in an upper limb (in 60% of the cases). (Source)
  • The diagnosis can’t come soon enough: the earlier it is diagnosed and treated properly, the better. Unfortunately, 15-20% of the CRPS cases become chronic and can be extremely debilitating. (Source)

My story & experience with CRPS


Unfortunately I fall into the category of chronic CRPS, where it is debilitating and it has disabled me and changed my life completely. However, I am not letting it dictate my life. At least, not completely.

Yes, I have days where I can’t get out of bed because I have so much pain. Going from summer to winter, wearing sneakers for the first time again in months, is sending me straight into a flare-up that can last for days, if not weeks. The week before getting my period? Definitely tend to get higher pain and flare-ups. Storm coming? I feel it. And besides that, I do have a lot of the other side effects: my vision has gotten worse, my metabolism changed, I deal with extreme fatigue and lack of concentration, it has a massive impact on my sleep, I am very sensitive to sound and light, etc.

But! I very strongly believe that leaning into all of these symptoms, instead of fighting it, is the way forward. At least, for me. Pushing through boundaries has not helped me at all, it only made things worse. I am currently on a path of listening to my body, finding and giving it confidence, getting to know my body again and learning to love it. Including the pain, not excluding. I am learning to touch my leg again, wear those socks, I am on a mission to buy new shoes this winter that I will be able to wear and slowly but surely put more weight through it.

It isn’t easy, not at all. This journey comes with so much grief, fear, insecurity, falling and getting back up (quite literally: you can read that here). But I believe that you can still learn to live well, have a wholesome, full and fulfilling life, that you can love life and do fun things.

And I have hope. Hope that there will be a day where the stigma around this disease (cause trust me, there’s many of stigmas on this one!) are gone, where patients will be taken very seriously by the medical world, that early stage CRPS will be caught on time and patients will be thoroughly helped. And that is why I find this CRPS awareness day, every first Monday in November, so extremely important. People need to hear about CRPS, they need to open their eyes to how extremely debilitating this is, we need to be taken seriously and it is up to us to educate ourselves & others. I wanna know and share everything there is to know about CRPS, even if it is to help just 1 other person. 

Wanna read more about my journey? Click here to check it out!

How to help people with CRPS?

A difficult, yet super important question. My answer would be: Just ask! There is absolutely no harm in asking and it is very understandable that you probably do not know. Hell, I very often don’t even know myself! And that is also because every single case is extremely different.

Yep, let that sink in & read it again: Every. Single. Case. Is. Extremely. Different.

And that is why treatments often do not work (enough). Stress, environment, past trauma, unsafe environments, work, financial situation, home situation, hormones; all of these aspects can have an impact on your CRPS and that is why creating CRPS awareness is so important. 

So why don’t you just ask the person? It might be that they need some space and alone-time. It might be that they want company, in silence. Or that they want you to take them out of the house and go and do something fun, without talking about the CRPS. Just ask the question. 

And what is it that helps me? Especially during a flare-up, I find that I cannot think straight. It feels like there is a thunderstorm and tornadoes happening at the same time in my brain and body, making me unable to think clearly and rationally. What helps me is that someone else in those moments makes the decisions. Sometimes, and only with very few people, I want them to hold my leg. Touch it. So that is what I can then focus on, rather than the pain. Other times I am in bed with the curtains closed and don’t want anyone to bother me (except for maybe that cup of tea).

Other than that, I have educated the people around me that there is a possibility I can cancel an appointment last-minute and that is néver because I don’t want to be there, but simply because I cannot be there. And being taken seriously in those moments and people accepting my boundaries, is extremely helpful.

Colour The World Orange Day: every first Monday in November

For now, today and the whole month of November, please make people aware of this disease. Talk about it with others. Create CRPS awareness. So that more people know about it, more funding for research will come and more understanding for the people who live with this terrible disease.

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6 Comments

  1. Thank you for sharing this enlightening information about CRPS on Colour The World Orange Day. My heart goes out to those enduring this unimaginable pain, and I wish you strength, resilience, and a 2024 filled with positivity and healing.

  2. Eline – thanks for sharing this important information on CRPS. Thanks for also showing how you can find joy and happiness despite the pain. I’m sure your blog will be helpful to many others who are experiencing pain, disease, or other major life challenges. Wishing you well !!

  3. Thank you for sharing. 🙂 So important to share personal experiences and information on such an elusive and debilitating condition. Sending healing vibes and well wishes <3

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