A little backstory

As I mentioned on my front page, I have recently been diagnosed with CRPS. By recently I mean a week and a half ago. For anyone who’s had those words uttered to them by a consultant or whose loved one has been the recipient will know what happens next: an excessive amount of googling, which leads to feelings of misery, depression and confusion.

Backstory

On the evening of December 18th, I was sat crossed legged on the sofa. When I got up, I felt a slight twinge in my left knee but thought nothing of it. However, the next morning I woke-up and couldn’t straighten my leg properly. I felt no pain but did have slight swelling. I hobbled through my day at work as a primary school teacher- luckily it was the last week before Christmas and the children were making Christmas cards and watching the Christmas plays. After work, I spoke to a pharmacist, who told me that I would probably regain the ability to move my leg within a few days.  But, that was not the case and I booked an emergency appointment with a nurse a few days later. Her verdict: a sprain or torn tendon, which meant a lot of rest for the two week Christmas holiday. Even though I regained some flex in my knee join, it did not fully heal. I booked an apt with a GP at the end of January. He looked pretty shocked when he looked at my knee, ordered an MRI scan and told me to get some crutches ASAP. If this was not bad enough, I got back to school to find out that OFSTED were visiting the next day. My first full day of teaching also happened to be one of the most stressful experiences a teacher will go through in their career. Luckily it went well and I waited excitedly for the NHS letter to drop through my letter box.

Anyone living in the UK will know that waiting for scans and consultant apts take a long time, so it ended up taking about 12 weeks to go from seeing my GP to seeing an orthopaedic surgeon to discuss treatment for a bucket handle tear in the medial cartilage. During the 12 week wait, I had started to experience some new symptoms. My foot would go dead or feel very tingly; I’d get shooting pains up my leg; my leg would go purple and I’d occasionally wake up with hyper sensitivity in my knee to the extent to which placing my knee on my duvet felt like placing it in fire. Looking back on it, I wish I had told the consultant about these problems but I just assumed they were caused by knee swelling touching a nerve. The first consultant I saw thought I needed an urgent surgery and, because of the length of time I’d spent injured (5months at this point), he thought that I should be referred to the top knee surgeon at the hospital. I left the hospital expecting to have an urgent referral to the new surgeon for the following week. However, the NHS experienced a cyber attack the following day. A one week wait became four weeks (from no fault of the hospital).

In my final consultant apt, a week and a half ago, the doctor touched my knee and noticed that it was slightly colder than my other leg. From this, he started asking me questions relating to the other symptoms I mentioned above. He stated that he thought I was experiencing CRPS and that he would refer me to the pain management team, as well as completing key hole surgery to repair or take out the torn cartilage. While in the meeting, the killer blow from the consultant was that it would be another 6 months of physiotherapy before I would be able to straighten my leg.

After meeting the consultant, I started to look in CRPS. The NHS website seemed to describe every symptom I had experienced but it did not give me answers to my questions. I now think that that is because this syndrome is experienced very differently by different people. Saying that, I personally felt that a lot of the literature available on the internet was geared towards people suffering from extreme pain most of the time. This syndrome is rated as more painful that child birth and can be as painful as having a limb amputated without any anaesthetic. Personally, I experience a lot of the symptoms mildly to moderately most days and then have severe ‘attacks’ at night, perhaps 5-10 times a month. The pain during these attacks is extreme and, yes, I would probably say that it is near to having my leg cut off or my foot stabbed. How I feel in the morning differs- sometimes I’m just a bit tired or foggy from pain killers and other times I’m still in a fair amount of pain. But, I have woken up and gone into work. Has it been difficult sometimes? Yes. Have I been able to do it? Yes!

I don’t know what will happen in the future. My surgery has been scheduled for July 4th. According the internet, there is no cure for CRPS but I’m hoping this blog will be about my recovery and then managing the condition.

Before I tore my cartilage, I played tennis, ultimate frisbee and was about to start training to complete the Yorkshire Three Peak Challenge. I don’t know what I’ll be able to do and when. My first goal will be to bend and straighten my leg properly and I hope to go back to playing sport again, too.

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