Complex regional pain syndrome (CRPS) is a widely misunderstood condition that causes persistent severe pain.
After being diagnosed with CRPS as a child, Ruby Chamberlain (now 21 years old) has suffered from increasingly debilitating pain that has prevented her from taking part in many of the everyday activities many of us may take for granted – including sleeping for more than 30 minutes at a time.
In this interview, Ruby kindly shares her personal experiences of living with – and raising awareness of – this mysterious condition and her hopes for life after lockdown following her spinal cord stimulation surgery at The London Clinic, which has significantly reduced her pain levels.
What were your initial symptoms and how were you first diagnosed?
The pain began in my left foot when I was around eight years old and gradually spread into my arm and back. I eventually felt pain in almost all areas of my body and had to become reliant on crutches and wheelchairs.
Due to my young age, doctors mistook my condition as ‘growing pains’. This meant my diagnosis of CRPS took three years, including visiting countless different doctors and pain clinics.
When I was 12, I attended a pain management course in Bath and found the support amazing. Although the pain in my back was still an issue, I felt like I was on the path to feeling better and was well enough to take my GCSEs and A Levels at school.
However, when I started university my condition declined. There were a few incidents during my second year when I couldn’t even get out of bed.
I found this time at university particularly difficult as it felt like I was eight years old again, with this really scary pain that was now spreading throughout my hips, legs and feet. The pain was so bad that I couldn’t sleep for more than 30 minutes at a time.
After pushing through my second year, I moved to London to start a work placement as part of my degree, but I had to leave as the pain became debilitating.
I couldn’t even sit upright for a few minutes at a time. I moved back in with my parents, who had to help me do everything including showering and going to the bathroom.
Can you tell us a bit more about complex regional pain syndrome?
Not much is known about CRPS, but for me I understand it as the ‘wires’ in my nervous system being crossed, meaning my brain can’t interpret pain properly.
I imagine my brain is receiving a message from my body that says, “This is awful, this is awful, this is awful.”
Personally, it feels like being trapped inside my own body and not having any control whatsoever. Before my surgery I would have spasms every day through my back and legs and my family would have to physically hold down my legs.
Although the condition is fairly uncommon, I’ve connected with quite a few people my age online who have CRPS. Strangely, my cousin also has the condition, although for her it’s localised in her foot.
What impact has complex regional pain syndrome had on your life?
The impact on my life has been huge. Before my surgery, I couldn’t plan to do anything in advance because I didn’t know how I was going to feel.
I would plan to meet a friend for a cup of tea and then feel awful on the day itself and have to cancel.
I’m a very sociable person so it was extremely difficult to accept that I wasn’t able to do the things other people my age were doing.
When I put my mind to something I’m determined to do it, but CRPS meant I just physically couldn’t. It was exceptionally frustrating and had a huge impact on my overall mental health.
What led to you fundraising for your spinal cord stimulation surgery and were there any highlights during the fundraising period?
For me, setting up the GoFundMe to fund my spinal cord stimulation surgery was out of sheer desperation – it felt like the last chance. I’d worked so hard for my degree but I knew I’d have to drop out if nothing changed.
It also felt like a race against time to find treatment before the pain spread further in my body and became even worse.
I’ve never been open about my health as I’ve always felt ashamed by it.
Society often assumes that young people should be at their optimal level of health so it was hard for me to be vulnerable by explaining openly what I was going through and asking for people to donate.
After setting up a GoFundMe online, all I initially did was share the link on Facebook and Instagram. The response was overwhelming – so many people in the first two days donated very generously.
My friends and family were amazing during the fundraising period. It was tricky as our fundraising activities had to be done with the COVID-19 restrictions in mind, but we held virtual eating challenges and a drag competition, which even saw my dad – who is super masculine – compete!
The biggest highlight for me was reaching the full fundraising target. I used Twitter to ask people with large followings to share the GoFundMe link with their followers for awareness.
Towards the end of the fundraising process, I tweeted a YouTuber one day asking if they would share the link with their followers. A few minutes later I received a notification that said the YouTuber had anonymously donated the final amount I needed – I was over the moon.
What treatment did you undertake at The London Clinic and what did it involve?
I had spinal cord stimulation surgery, which means a pacemaker-like battery pack connected to electrodes in my spine is inserted under the skin in my waist.
Although the surgery was a big undertaking, it has massively exceeded my expectations. There isn’t a finite cure for CRPS so I still struggle with pain every day and I still have to manage my symptoms.
But the surgery has meant I am no longer reliant on my wheelchair and walking aids. In some parts of my body, my pain levels have fallen by 70%. It’s incredible.
My time at The London Clinic was great, especially considering my operation took place during a pandemic. My doctor, Dr Moein Tavakkoli, was so calm, which put me at ease from day one.
Due to COVID-19, I had to self-isolate before arriving at the hospital. After arriving, the staff made me feel at ease and the whole process was very efficient.
How does your generator work?
The generator has several settings for reducing pain, so after surgery we had to work out which settings worked best for me. To be honest, it was a gruelling process emotionally to work out the ideal settings for me, but now that it’s set up it feels like I’ve woken up in a new body.
I feel like I’m learning all over again what I can do and what my body can do, but I haven’t had to use a walking aid or wheelchair and I can even take the dogs out for a walk, which has proved to be a huge boost for my mental health.
I do have to say that there have been some funny moments during this whole experience. I have to charge the generator with a wireless charging pad and the noise it makes when it’s finished charging is very loud. It went off when I was at university and everyone thought it was a fire alarm!
What was the most challenging or unusual aspect you have faced while battling this condition?
The oddest aspect for me was the number of people who commented on how ‘lucky’ I was to rest at home when I was really unwell.
For me, being stuck at home with this awful pain reminds me today of the lockdowns we’ve all experienced during the COVID-19 pandemic, but without the ability to do something productive, or take up a new hobby such as yoga.
I hope that one benefit from these lockdowns and time working at home is that people will have a better understanding for those who have disabilities or are bed-bound – we have always lived like this and will continue living like this.
There are many aspects in the world that can be improved for those with disabilities but one main point for me is the need for flexible working offerings. I was forced to leave my work placement due to the pain, but having the option to work from home would have made a huge difference to my life.
How has the operation helped you and what can you do now that you couldn't do before?
Although it sounds like a cliché, the operation has truly allowed me to live again – everything has changed. I feel like I now have all this time to think and just enjoy life. I’ve even started studying again remotely for my economics degree.
It’s also made a huge difference to my friendships and relationships as before my operation I was so poorly I couldn’t even hold a conversation with my friends.
I didn’t realise how cloudy my brain had become due to the constant distraction of pain, so this treatment has allowed me to fully engage and interact with people again.
The lockdowns have obviously resulted in restrictions as to what I can do, but I’ve already loved being able to do things that other people might take for granted – yoga, dog walks and even just having the ability to sit upright for hours, not minutes!
What has helped you personally to get through your treatment?
My family has been incredible, along with my university housemates and best mates from home. Together, they’ve been an amazing support network and have kept me positive through all of this. For example, there might be a day when I’m not feeling well at all and they’ll say, “Sit down and we’ll cook you dinner.”
Since social contact has been restricted this year, my dogs have also given me the motivation to go out, even if I’m not feeling quite as well. I’ve used my dog walks as a way to track my progress by comparing the distances I can walk each week.
What are your plans for the future?
I have two big goals for the future. Firstly, I’d love to work in economic policy, so I’m hoping to move to London to live and work there over the summer or after graduation – there’s no way I’d be able to do that before the surgery.
My second goal is to raise awareness for invisible disabilities. I feel like the conversation about invisible disabilities is finally picking up so I’d love to be involved with this.
I’m also just looking forward to having some fun with my friends after this horrible pandemic is over. I think we all deserve that!
CRPS: a clinical perspective
Dr Moein Tavakkoli is a consultant at The London Clinic who has huge experience in managing patients with refractory pain, often of pelvic or spinal origin and undertakes pain procedures including spinal cord stimulation, peripheral nerve and sacral nerve stimulation. He is also Ruby's specialist.
Speaking about complex regional pain syndrome, Dr Tavakkoli shared: “Ruby came to me with a long-standing history of refractory neuropathic back pain, which remained stubborn to all other treatments.
“CRPS is a rare condition that occurs when minor trauma to soft tissue in the body causes sensation to nerves in that region. An individual’s tissue will heal from the trauma, but the sensitivity experienced to the nerves in that region will continue, transforming into pain signals received by the brain.
“The pain experienced is as ‘real’ as any other pain, but the mechanisms are different to that experienced by a broken bone, for example.
“The implant provided to Ruby can be thought of as a pacemaker for the spinal cord – it works by sending counteracting electrical signals to the brain through spinal cord simulation. The device will last for around 10 years, after which we would consult with Ruby to see if it is still needed as luckily the pain associated with the condition can reduce over time.
“It’s important to note that for those with CRPS and other chronic conditions, a reduction in pain isn’t the only thing that needs to change in order to improve someone’s quality of life.
"Over time, those who experience extreme pain will notice that their muscles become weaker due to lack of use, which is why we would also offer physiotherapy as part of a multi-disciplinary approach to help regain strength.”
Meet the expert
Any views expressed in this article are those of the featured specialist(s) and should not be considered to be the views or official policy of The London Clinic.