Almost an exact year to date, after months of enduring countless medical appointments with no answers I was finally diagnosed with a condition named Complex Regional Pain Syndrome. The condition stemmed from pioneering knee surgery that I had in 2011. As Complex Regional Pain Syndrome isn't a widely recognised condition (I had never heard of it until I was diagnosed last year) I thought I'd write about what it's like to live with the condition.
Having Complex Regional Pain Syndrome means that basically I suffer constant pain in the affected areas of my body. From what I've heard CRPS can be caused by a whole host of things, mine has stemmed from the knee surgery I had back in 2011 but we cannot pinpoint the exact reason why I suffer from it. Due to the personal experiences I've had whilst suffering from the condition I have noticed that my pain flares are triggered by things such as emotion, stress and even cold weather.
It's difficult to describe what exactly the pain feels like; I haven't ever experienced pain like it before. The only way I could begin to describe it is that the pain feels like burning but I must emphasize that it's much more intense than "just burning". I mean this is the kind of pain that keeps you awake at night, it makes you feel sick and downright miserable.
I also experience pain in my hand and foot as over a period of time it has spread from my knee to other parts of my body. When the pain flares in my foot my heel turns a bright shade of red and stings whenever it touches or rubs against anything. It reminds me of having a carpet burn but on a much worse scale. On some occasions it swells making it both difficult and uncomfortable to wear a shoe on my right foot.
Apart from experiencing gruelling and debilitating pain I suffer a number of other symptoms that go alongside CRPS. My hand for example is extremely painful whenever I attempt to use it, particularly when it involves fine motor activity. Whenever I use my hand to do something or if I feel stressed, upset or even excited it goes into an uncontrollable tremor which is not much fun at all! I usually wear a splint in order to support my hand, keep it steady and minimise the tremor.
Complex Regional Pain Syndrome also affects my nails. I've experienced that the growth in my nails takes much longer than it used to they have also cracked for no apparent reason. When reading about CRPS it's apparent that nails are often affected leaving sufferers experiencing similar problems to the ones I have. My sleeping patterns are also affected drastically by the pain. It takes me forever to fall asleep at night due, meaning that I spend the following day yawning and feeling pretty tired.
I have quite a large scar spanning from just underneath my knee and doesn't stop till half way up my thigh (it's a similar shape to Harry Potter's lightning bolt scar except bigger) the skin round my scar feels numb but at the same time feels extremely sensitive as does the rest of my leg. I hate when anything rubs against both my knee and foot as it makes me jump due to it's sensitivity.
There has been times (mostly in the winter months) when my pain has gotten so bad that I had to go and lie in my bed for hours on end in complete darkness. I felt very sick at times and didn't feel much like eating which also caused problems because when I don't eat I cannot take pain relief to help ease the pain in the first place. Those winter's days were like nightmares! Whilst everyone is excited for winter hoping that it might snow I spend my time dreading it as I know the cold weather makes me feel so miserable! I know that if I decided to venture out into the snow that I should prepare to spend the following day in bed.
At the current moment there doesn't seem to be an exact cure for CRPS, I rely on coping mechanisms in order to manage my pain. Throughout the past few years I've spent a lot of time going back and forth to countless hospital appointments not just looking for answers but to also attend pain management clinics. At pain management clinics my consultant looked at a range of different treatments to help ease my pain. Some have had better results than others but for various reasons I felt that they weren't the right treatments for me due to side effects that went hand in hand with them. Using coping mechanisms and taking basic pain reliefs is the best way that I can manage my pain at this moment in time.
As much as my health frustrates me I always try to remain positive despite how difficult that can be. Hopefully some of what I write here on this blog will reach someone out there going through similar experiences to me. I think I mentioned previously that there isn't a lot out there for people like myself. There are articles on the internet written by experts about my condition and others similar but there isn't much material written from the point of view of a person who lives with it everyday. Yes, a piece written by a professional is great; it's informative, looks at the facts, research and statistics that have been compiled together. I however, want to compose writing that is both relatable and appealing to someone of my age group.
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