The story of Phoebe
So…. end of April in 2020 I suffered a knee injury which was a sprain/sheering injury. Which we were told I would be on cruches for a couple days and it would get better after a couple of weeks well 3 weeks went past and if anything it was getting much worse! So we went to my GP and they referred me to the fracture clinic which there I have numerous mri scans and tests done and all there was to be found was odema and a sheering injury which is what we already knew. I also had a bursa on my knee cap. So it finally started to get better i was still having pain and abit of swelling and brusing but not much! Then I’m august 2020 I was running and slipped and twisted my knee and then had the worst brusing, swelling and pain! I had a physio appointment a few days after and I got put back on cruches and got referred back to fracture clinic because they thought I had damaged my ligaments! So then I had another mri scan it showed that nothing had changed from my other scan still the bursa and still sheering injury so then my knee became very inflamed hot and red so they thought I had an infection so I got prescribed some oral antibiotics it went down then a few weeks later I went back to the gp because I got brusing all the way down my leg both side of mt calf back of my knee and it was bright purple the swelling was awful and I then got awful sensitivity so I couldn’t touched my leg without needing to scream. The gp gave me some more oral antibiotics for another potential infection, in fact it didn’t get better with the antibiotics it got worse so much worse.
Then I got referred to the pedeatric ward where I was seen by a pedeatric consultant and othopedics and they suspected cellulitis! So I got admitted to the ward and then started treatment on strong iv antibiotics it got better…. Than a repeat we went back to the gp as it got worse on oral antibiotics then got sent back to the ward and then that repeated 5 times. I then had 6 weeks of iv antibiotics ambulating and got put in a mid line! Because they couldn’t keep canullting me.
I then came across this lovley pedeatric consultant on ward rounds and he had a think about what could be going on because I couldn’t keep having a repeated infections. He came to the conclusion that it was Complex regional pain syndrome which when we looked into it abit more it sounded just like me I had all the symptoms! So I got a physcologist and a physio on my team to and they admitted me to hospital in January 2021 and we started intense physio therapy every day twice a day and physcologist work.
I have had so many flare up since then and I walked with two cruches and then in June 2021 things started to get a little better I was able to walk with 1 cruch and I was still in a lot of discomfort and whenever I touched my leg it still felt like I was being burnt alive!
Then September 2021 I had a massive flare up which led me being admitted to hospital and since may 2021 I had a turned in foot called dystonia so that got so much worse and it was locked into one position so I couldn’t move it without screaming and it just wouldn’t move the swelling brusing was awful too. So in September I had twice daily intense physio and then it got more manageable so I got discharged! And things just weren’t getting much better from that point I became really unwell from a kidney infection which led me to be put on a iv drip. And then I started getting gastro issues so I got pain and sickness after eating which led me to not eat properly for a few months which made me very very very unwell and got admitted in December 2021 from malnutrition and dehydration. I was so poorly.
I then gained back a little bit of nutrition and started to eat a little better I was still getting alot of pain and sickness but I was trying to push through it.
From not being able to eat and drink I lost all my muscle so I had not strength in my body I was just sleeping all the time wasn’t able to get out of bed so we thought it would be best we got a wheelchair to help me move a little more easier!
From now on we’re still going okay My crps is still bad and my gi issues are still very bad but we are hopefully going to get stronger and start to walk again. But I’m still in a wheelchair.
Thank you for listening 💕💕