Probably the worst bit about CRPS taking over your body, is knowing the fact that it is a progressive disease and no matter how much I hurt now, it’s only going to get worse! Last Thursday, I went to the Pain unit at the Royal Adelaide in hope of getting some help. I have noticed my feet getting worse and over the previous weekend I noticed the pain spreading past my arm and into my arm pit and breast. I knew it was time to get aggressive with my treatment because this beast is spreading fast.
My trip to the pain clinic was a little bitter sweet, while I got the treatment I wanted but I did not like the doctor. By the time I got to the entrance of the hospital I could barely stand. My legs were just too weak. I had easily done the same walk only 4 weeks earlier with ease. It was really scary not knowing if I would collapse every time I attempted to stand. The doctor was not at all interested in my legs. Once again I had a doctor that knew nothing about CRPS and was trying to bluff their way through. In his opinion CRPS only spreads in about 5% of cases (try 70%) and it was odd that I was having trouble with my legs when the initial injury that triggered CRPS was in my left hand. So in his opinion I needed a nerve block in my hand that would settle my hand. Now I want having any of this. It common knowledge that a nerve block would only benefit the effected limb. So I pestered the Doctor with enough questions that I knew he didn’t know the answer to and he finally offered me a Ketamine infusion. Exactly what I wanted! So in a few weeks I will be heading to Adelaide for the first of 3 infusions. Hopefully they work, even just a bit. In fairness The Dr did make a connection between My CRPS and the lack of care I got from my local hospital when I was first burnt. He immediately linked the infection in my burns to my CRPS. Good to know but I won’t dwell on that too much!
So it’s been five days since the trip to Adelaide and I have been in pain ever since. The pain has been mostly bearable until today, where I struggled to walk this morning and had to force myself to move because one of my horses needed a skin condition tended to. My babies have to come first! My arm is achy and sore and my soles of my feet feel like they have been whipped and walking on them is just hell. My lower legs and feet are also showing a change in colour for the first time and are as hot as they look. This morning was pretty crap. I just couldn’t get past the pain. The pain doctor gave me stronger pain killers to try. They don’t help the pain much, but they do take the edge off and numb the mind a little. I managed to bake a cake this afternoon courtesy of the meds.
I’m starting to fear that before long I will end up in a wheel chair and that is not ok with me at all. I’m not feeling sorry for myself, it’s just that I know I have done so well to keep myself functioning and I’ve done all I can to maintain movement and my ability to do the things I love. Hopefully this is just one big pain flare, but in the past month I have had only three days where I was not in a pain flare and that was because I increased my medication. I also know I have to wait to see what comes up with my MRI. My legs are not acting completely as they should with CRPS. There is no damage to my spine so if there is anything else, then it would be coming from the top. Multiple Sclerosis is possible, but who knows. If it is, horse riding is great therapy so that would soften the blow. But I guess I just have to carry on and wait for the MRI and to see a neurologist.
It’s strange really how my hand has been mostly controllable and this is where the CRPS started and there would have to be nerve damage thanks to my burns, yet my legs are giving me more hell. I could handle only having one arm in use, but no legs is just crap. At least I should still be able to ride my horses as I wouldn’t be putting weight on my legs. Hopefully the Ketamine helps to tame the beast. I really need something to go my way.