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NEW CRPS STORY

2016-02-24

NEW CRPS STORY

This month’s new CRPS story is from a lovely young lady from the UK; KIRSTY HUMPHREYS. Kirsty has suffered from CRPS since around 2010, after what should have been a simple knee operation that changed her life forever.

 

Here is Kirsty’s CRPS story:

MY CRPS STORY

New CRPS Story - Kirsty main

New CRPS Story – Kirsty

My name is Kirsty Humphreys and this is my CRPS story. It actually all started from birth, which was actually unknown to me (obviously) and my Mum at the time, which as you read on you will discover why. I was born in February 1990, 6 weeks early but reasonably healthy. But as time went on and I began to grow, it became apparent that there was something wrong with my legs. I was a very clumsy child, my feet turned in badly and I would sit in the most unnatural positions. I saw paediatricians and Orthopaedic specialists who just couldn’t agree on what was the matter with me. One said it was a problem with my hips, another said it was my feet, and so I ended up with these hideous things in my shoes to try and help turn my feet out.

The older I was getting, the more into my sports I was getting, football, netball, hockey. You name it, I loved it, even more so as I began high school because there was more chance to play them and I got to become part of teams for them all. But things were getting difficult. I was falling a lot and I was noticing that my knees were hurting a lot as well, and one day in School, I fell down some concrete steps but just before it happened I remember feeling like my knees had just given way under me. So my mum had enough and took me to the doctors, who referred me to a Specialist, who did x-rays which came back showing I actually had dislocated knee caps in both knees, and this had gone undiagnosed from birth! I was now 12 years old.

So at 13 I had both  knees operated on, which unfortunately failed, but because I was so young and still growing there was nothing else they could do until I had stopped growing, so until I was 18. Now I had 5 years to wait. I was 13, now how can you tell a 13 year old tomboy to stop doing the one thing they love most, sports, because there is nothing they can do for another 5 years? You just can’t really can you. So I carried on with my sports, added a few more to the list, I was pretty awesome too if I do say so myself ha. But as time went on, my knees were getting worse, dislocating more frequently. It came to the point where I just popped them back in myself, gross I know, but they were so loose they’d often just pop out and slide back in without me doing anything. Even my sports were getting more difficult. I had always been a big girl growing up, but being 16 stone probably wasn’t really helping either.

 

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But at 16 I decided I wanted to be a Lifeguard, seeing as all my life all I ever wanted to do was become a Police Woman, I thought the qualifications of becoming a pool Lifeguard would look good, and so I qualified. Probably not the best job to get when you have dislocating knee caps, but eh I loved it.

Finally at the age of 18 I was referred to the Robert Jones and Agnes Hunt Orthopaedic Hospital in Gobowen where I was seen by a knee consultant who said I needed surgery on both knees. And so in January 2009 I had my left knee operated on which had some complications but went ok. But recovery was slow and didn’t go too well, and in 2 months I piled on 2 stone in weight leaving me a whopping 18 stone!! The heaviest I have ever been.

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So I decided I had to do something and joined weight watchers. As time went by I knew something wasn’t right with my knee, it kept giving on me, I was having a lot of pain, and 7 months later I went back to work but in the coffee shop in the Leisure Centre where I worked as a Lifeguard, and on my second shift I slipped and fell on water and tore all my ligaments and the artificial ligament I had just had put in. But because I needed surgery on my right knee, my left had to wait, and in November 2009 I had my right knee operated on, which actually went very well.

 

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[Tweet theme=”basic-full”]Kirsty has suffered from #CRPS since 2010 after a simple knee operation that changed her life www.burningnightscrps.org/new-crps-story-2/ [/Tweet]

 

Due to a fall in April 2010, I was admitted for emergency surgery on my left knee, which changed my life forever. What should have been a simple knee operation left me with no use of my legs and mixed sensation and 3 month stay in hospital, ending up wheelchair bound, and test after test and scan after scan. Thankfully by this point I had lost about 4 stone in weight through weight watchers, so the pressure off my legs was a lot less. The Consultants had no idea what was happening and put it down to my legs shutting down due to so much trauma over such a short space of time!

New CRPS Story - Kirsty 3

 

My whole house had to be adapted, I had to have a bed put in the living room because I couldn’t get up the stair, a ramp was put outside, I had to have a commode which at the time I was 20 and the thought of that was just disgusting. Everything changed drastically. My mum went from being just my Mum to my Mum and my full time carer and I went from being Kirsty this fully mobile sporty Lifeguard, to Kirsty this woman who has just completely lost her mobility. It was so hard.

And that was ONLY THE BEGINNING…..

 

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As time went on it was clear that something was seriously wrong. Me and Mum were noticing that my feet and legs were turning black, blue and purple colour, and I was having such horrendous pain in my knees. So back and fourth to Gobowen nearly every month it was to be seen by my knee Specialist who kept reassuring me everything was fine, I’d be up and out of my wheelchair soon, my knees would be fine and the pain would go away, and the colour was just my circulation. There was absolutely nothing to worry about. Yet everytime I had a circulation test my circulation was fine!!

Finally after 18 months of my Registrar convincing my Consultant to send me to a Pain consultant he agreed just to shut him up, and In February 2012 I was finally diagnosed with CRPS in my left knee and foot.

[Tweet theme=”basic-full”]Read Kirsty’s #CRPS story where she had 2 convince her Consultant 2 send her 2 a Pain consultant where she was diagnosed w/ CRPS[/Tweet]
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That’s when it all started. All the different medications that to begin with make you feel so sick, make you feel as high as a kite, yet do absolutely nothing for the pain, so they try you on higher doses, until you max out and have to try something else. Then the procedures start, spinal blocks…FAIL. More medication, all the while the pain is getting worse, and I was sinking lower and lower into a depression not knowing really what CRPS was, not knowing anyone else who had this disease, so not having anyone to talk to who truly understood. That for me was one of the hardest things ever. Yes I had my Mum who was an absolute star, she gave up everything to take care of me, but she couldn’t truly understand what it was I was going through, nor could my friends that had stuck by me. I was going into these treatments blind, with only google as my way of sort of understanding what it was I was about to have done, which was terrifying.

 

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I finally had to accept that I’d never be going back to work as a Lifeguard and I lost my job, I had to accept the future I wanted as a Police offer was never going to happen. That made me sink even lower. I felt as if my life was basically over. What was I going to be capable of doing? Everything I had was gone, everything I had ever dreamed of becoming ever since I could remember had been taken away from me by this damn disease that I didn’t deserve, why did I have this damn disease? I just didn’t understand what I had done to deserve so much pain and suffering.

People I had been friends with since I was a toddler had walked away, accusing me of faking everything for attention. That was hard!! Nothing was helping, the pain was getting too excruciating to bare, all I wanted to do was hack my leg off, and yet I knew deep down that wouldn’t stop the pain I was in, and it wasn’t just my left knee and foot anymore, it was both legs, both feet, my back, I felt as the pain was spreading, but was this possible? I didn’t understand anything! I felt so confused. I just wanted someone to talk to who understood what I was feeling and to explain it all to me.

 

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Back into hospital for 3 weeks, I went, more procedures. Catheters into my groins to numb my legs to try and ease the pain, I had 2 of these, but they both failed. I had nerve blocks in my groins and hips and knees. Still no relief. In the end my Pain Consultant decided he would try ketamine infusions, I wasn’t a fan, but eh, I was in so much pain I was willing to try anything so I agreed, and 3 ketamine infusions later and I was screaming out in pain it was so bad. My entire body was agony, my legs on fire. 3 weeks as an inpatient. 14 different procedures, a change of medication once again and nothing, just to get told my CRPS was indeed spreading.

 

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On a more positive note, I did however, after 2 years on weight waters reach my goal weight, without ever gaining throughout that 2 years, lose just over 7st in weight. I went from 18 stone, down to 10st 11.5lbs, and because of my journey with my health, and the fact I had still continued to lose my weight, I was chosen to have my story published in the weight watchers Magazine, and I got to go on a photoshoot in London and have a makeover, now that was pretty awesome. I have put a little on since then, but exercising, with CRPS, when you use a wheelchair full time is kinda difficult.

 

New CRPS Story - Kirsty 7

 

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Anyway, a couple of months later I was called back to have a guanethadine block, which again had absolutely no effect at all, for my pain, and it was becoming clear that nothing was helping, so my pain consultant had no option but to refer me to a specialist Neurological Centre to be assessed for the Spinal cord Stimulator, and I was accepted. So in September 2013 I had my trial SCS which wasn’t very pleasent, but I thought it helped a little, so I agreed to go and have the permanent one done, and so on the 23rd of December 2013 I had the permanent SCS fitted, unfortunately there were a lot of complications during my surgery and in placing my SCS, and the while in hospital, on CHRISTMAS Eve I did have a fall and popped my staples and caused some damage to my battery, which unfortunately 8 months later had to be replaced. I don’t get much relief at all from my spinal cord stimulator, I have it on all the time, but I just don’t feel it gives me much pain relief at all.

  New CRPS Story - Kirsty 8                                                New CRPS Story - Kirsty 9

Since having my SCS I have had a few other procedures. Various injections, nerve blocks in places that my CRPS has spread to, my head and face, my hands, and in October this year I had a Lidocaine infusion which unfortunately didn’t just fail I also had a toxicity to and ended up in the High dependency unit. I have now also been told I have full body CRPS, with it in my bladder and kidneys as well.

 

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New CRPS Story - Kirsty 10

 

There is nothing more that my pain consultant can do for me as he has tried every pain killer there is, every injection there is, and every procedure there is on me. He has now referred me back to the Specialist Neurological Centre so that I can discuss with a different Consultant about a Dorsal root ganglion stimulator, but I’m not 100% sure how I feel about that. But I will continue what I’m doing, I will continue going to college once a week to get my Counselling Diploma so that I can help others. One thing’s for sure, giving up isn’t an option for me.

Thanks for reading my story xx

 

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THANK YOU Kirsty for sharing your CRPS story with us! Realising you’re not on your own living with this condition is important which is why we share CRPS stories with you.

If you’d like to have your story included in our blog please CONTACT US and send us your CRPS story with some pictures and show others that they’re not on their own and how you deal with CRPS in your life. This was our new CRPS story, please do share it on social media!

 

Last Updated: 25/01/2016

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About the Author
I'm a barrister, advocate & sufferer of Complex Regional Pain Syndrome (CRPS). I am also a bilateral (double) above knee amputee due to aggressive symptoms of CRPS. However I want to help all those affected by this devastating condition which includes those living with CRPS, their loved ones, families, carers and friends. Please help spread awareness of this debilitating and life-changing condition - CRPS. We need your support!
  1. Irene b Reply

    Just read your story Kirsty and you say thank you for reading your story it should be us thanking you for sharing your story. What a plucky young lady you are, you have certainly been through a very lot in your young life. Let’s hope one day that someone will come up with a miracle cure for this horrible disease.
    I know that Victoria has been working tremendously hard to spread awareness for CRPS. She is so determined to help others with the work she has been doing.
    Thank you once again and all the very best to you.

  2. Christine Fleming Reply

    A story that not only shows what CRPS does but also the strength of character that each one of you has. Kirsty those who have walked away were obviously only fair weather friends and whilst it will have hurt you have come through a journey that they would not have been able to cope with. I am so pleased that I have met you. (and your Mum) thank you for telling your story..
    Have a lovely Christmas (hopefully low pain) I look forward to seeing you again in the NwYear xxx

    Christine xx

  3. Paula Sheerin Reply

    You’ve had a terrible time Kirsty and some of your procedures were done too late to help you (spinal blocks needed to be done inside 3 months if at all) leaving you and your mum further distressed. I won’t waste your time with platitudes, none of us CRPers has time for them anyway.
    Have you done your own research on the stimulator by googling the name of it? If you don’t find it, type “google scholar” first, then type in again. This gives you more of a feeling of control over what happens to you and you will have specific questions for your consultant. Look for specific stimulator support groups on Facebook – they exist.
    I’m Irish but was diagnosed while working in US and people there have been “active patients” for a long time.
    Look into LDN or low-dose naltrexone on the web and again there’s a Facebook group!
    Counsellings a wonderful idea, we need you so bad. Well done! Email me if you want, Victoria has my details plus name on Facebook!

  4. Laurence Badgley Reply

    There are aspects of Kristy’s story that raise concern, in my mind, for an underlying disorder called “Hypermobility Syndrome” (HS). Has she ever been evaluated for this soft tissue disorder? My clinical research suggests a marked association of CRPS and HS. She might consider contacting Dr. R. Grahame, who is a world-class expert of HS disorder. He is highly respected in England, where he practices medicine. He is a Rheumatologist.
    Laurence E. Badgley, M.D.

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