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Life Changing Treatment for CRPS

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I am crowdfunding for life-changing treatment at the Spero Clinic in Fayetteville, Arkansas to treat my CRPS that causes debilitating chronic pain in my right arm, and GI Tract. To learn more about my fundraiser please see below. There is also information linked in the following articles written by The Mirror , LadBible , The Daily Star , Daily Express , Bedfordshire Live and Cambridgeshire Live . You can also listen to the recent radio interview I had with BBC Three Counties Radio.


I am 19 years old and I have unfortunately had to experience the full effects of Complex Regional Pain Syndrome for the last two and a half years following a blunt trauma injury to my right arm in early 2019. This caused within a very short space of time pain like no other that felt I was on fire – it was debilitating, scary and frustrating. It was dismissed for six months, and I was told by a doctor that ‘It was all in my head’ and that ‘I should just get on with life’.

What is Complex Regional Pain Syndrome?

CRPS is an uncommon form of chronic pain that typically begins after an injury, heart attack, or stroke. The brain fails to shut off the pain signal, which leads to agonising persistent extreme pain which can cause several other significant health issues. In my case, the condition caused me to have seizures, loss of consciousness, severe headaches, GI Tract Dysfunction and ultimately lead to the loss of function in my right arm. It doesn’t only affect me physically though, the mental and emotional distress this illness causes adds to my fatigue and pain and is an ever-ending cycle of distress. CRPS is considered as the most painful chronic pain condition and scores (roughly) a 42 out of 50 on the McGill Pain Index.

 

 

Reference: https://www.burningnightscrps.org/sufferers/pain-scale/

Attempted Treatments

I have tried several treatments in an attempt to relieve me of this pain, but none of them has had a positive effect long-term. I spent months on opioid drugs that made me tired, sick, and ultimately didn’t actually touch the pain. In conjunction with this, I tried medications that weren’t even licensed for the condition but were tried as they had some form of potential pain-relieving symptoms. I also tried more invasive methods such as a Lidocaine Steroid Injection which caused the pain to get worse and two nerve blocks that bought my pain down for a limited period of time, which has since returned at an even greater level than ever before. The pain is that bad currently that I have to have sedatives to help me sleep, which still only allows me to achieve between 2-3 hours of sleep a night. Prior to this, I would have an hour if I was lucky which did and still does make daily life a struggle because I am constantly fatigued, regardless of how rested I am.

My Current Situation

Over the last year, the pain has continued to get worse which resulted in severe GI Tract Dysfunction meaning that I am throwing up food that I consume and have extreme unbearable pain. This has led to nearly being hospitalised due to low potassium levels and increased pain levels as my body attempts to continue fighting. In November 2021, I was hospitalised following a deterioration in my health. Unfortunately, the effects of my CRPS has spread to my Bowel and Stomach so it is imperative I have this treatment before it continues to spread any further. 

I was only able to do school part-time due to my pain levels and fatigue which made it extremely hard to keep up with everyone else. Due to continued persistence, I have managed to still obtain a good set of A-Level Grade's and get into University. I live at home to complete my studies in Cambridge as many daily tasks are too painful to carry out myself which means I have to rely on my Parents additional support. Working a normal job is currently impossible, so I currently freelance so I can continue building key experience. Without this treatment, my career is on hold.

Unfortunately, many of the potential treatments are not available through the NHS due to the funding and the ever-growing waiting list. The NHS is amazing, and I am so grateful for all of the treatment that they have given to me so far. The unfortunate reality for me is they simply don’t have the capacity or resources to treat this condition. Not only this but many of the treatments aren’t licensed in the United Kingdom which means they have an even greater risk leading to potentially more issues.

The Spero Clinic

Both my parents and I have read about the power of the Vagus Nerve , but this treatment is very limited in the UK, and I would be waiting a very long time to receive it. Even if the treatment was able to 'work' it would require a long-term programme which the NHS simply cannot facilitate. I began reading about the Spero Clinic and its successful use of the Vagus Nerve. What stood out was the large amounts of positive feedback of people having a severe reduction in pain and/or remission. It was a renewed sense of hope that I haven’t felt about any potential treatment for a very long time.

Unfortunately, the cost of treatment is extremely expensive, due to the intensity of it and how specialised it is. Private Healthcare Insurance will not cover this treatment, so my last resort is fundraising. The money fundraised will go towards the treatment, flights, travel insurance and accommodation which will facilitate my ability to hopefully see a reduction in my current pain levels.

Their motto is “Dum Spiro Spero” which translates in English as “While I breathe, I hope”.

A video from the clinic is here:

I am staying forever hopeful that this treatment will give me the opportunity to regain my health and live a pain-free life for years to come.

Any contribution is absolutely amazing, you would be giving me the opportunity to get my life back. I will be able to live, not exist. 

Thank you for supporting my journey, I am eternally grateful :)

Jack!

 

Organizer

Jack Puttock
Organizer

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