On Wednesday, I took the next step to find my cure for my Complex Regional Pain Syndrome (CRPS).
I have CRPS in my left knee which I have had for over 6 years now. The way I try to explain it to people is that it feels like someone has thrown petrol over it and then set light to it, continuing to throw more petrol on it, whilst being smashed with a sledgehammer. It is constant, relentless and exhausting. This is without any flare ups, which I get at least once a week an vary in how long they last. When my knee flares up, it gets to the point where I just want to chop my leg off myself, as it is a physical and mentally nightmare, I won’t wish CRPS on my worst enemy!
CRPS is classified on the McGill pain scale as the most painful condition in the world scoring 48/50. To put that into context, toothache or a fracture score 20/50 on the scale; and a phantom limb 25/50.
The reality of CRPS is I am constant pain, exhausted all the time, walking funny in my case; and have to wear two knee supports; one to compress the swelling as my knee looks like it has another knee cap at the back, and one which is much bigger that enables me to walk without my knee giving way on me. They definitively are not a fashion statement!
I have been on so many different pain relieves, none of which touch the sides and even smoked weed. I have been through my GP, who has no idea what to do with me now! Also, mental health to try and trick my brain to thinking it is like my right leg; orthopaedics who originally diagnosed it in November 2019. Rheumatology who confirmed the diagnosed and added in fibromyalgia in February 2020; seen physiotherapy, specialist musculoskeletal team, the pain clinic and managed to get myself on a clinic trial for a new drug designed especially for CRPS in 2020, but no signs of it being licenced anytime soon!
Following a long discussion with my GP about 2 months ago or so, I finally got referred for an above knee amputation, as I can’t put up with this pain for the next 25 plus years. I was referred to orthopaedics, who in turn referred me to vascular surgery and my local enablement centre. I saw vascular surgery about a month ago, who checked all my pulses to ensure I would have good blood flow for healing.
On Wednesday, I went to my local enablement centre where I met my rehabilitation team. It was quite daunting as it was just me in a room with the Rehabilitation Consultant, Specialist nurse, Occupational Therapy, Prosthetic and Physiotherapy.
Everyone told me the pros and cons of having an above knee amputation, discussed my lifestyle, living arrangements with my German shepherd and six guinea pigs, which made them laugh as they love the little wheeking noises they make; and how my life has changed since developing CRPS. Before, I used to run, swim, do triathlons and play touch rugby. All that has gone and I want to be able to run and swim again, I want to live again not just exist!
They were all professional and gave me unbiased information about having going throught the operation, recovery and rehabilitation. However, the physio for whatever reason took a dislike or something to me, as they were very biased on the negatives of the amputation. They seemed to want to prove that it was all in my head even though two Consultants diagnosed it. They tested my lower limb for everything. I can’t feel my lower left leg, it is completely numb with no sensation to touch or movement and they subsquently have caused a flare up!
Their attitude really annoyed me and upset me, I wish I had one of my closest friends with me, as I know she would have ripped a new one! I think it annoyed me, as a retired paramedic I used to have the same registration body as physiotherapists, so I know what is expected of you and how you need to conduct yourself. They broke most of the registration body guidelines in relation to treating your patient with dignity, respect and giving informed and unbiased information so they can make an informed decision on their care. If they had been a paramedic they would probably be the one that got assaulted a lot!
In summary the meeting was mostly positive and unbiased, giving me the information I needed, and to be fair there was no surprises really. I am now in the process of being referred to plastics at a hospital that I used to take patients to regularly as a paramedic.
Amputation is a controversial discussion to make, but existing and not living is not me. Even if I end up wheelchair for most of my life, it won’t stop me find a new version of my previous lifestyle; whether it is completing in a wheelchair or on a prosthetic leg, I know it is going to be the biggest challenge of my life, but I need the challenge to change to live again, just existing is not an option!
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