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NON PROFIT ORGANISATIONS CRPS RSD PAIN
I’m only fifteen days late; don’t panic, it happens, I have CRPS.
They tell me I have to try to remember that it’s not me that’s unreliable, it’s my body, and yes, it is hard to swallow.
My life used to run on a very tight clock, and I still like to be a few minutes early but this condition, this pain, often sees me postponing or cancelling appointments, arrangements and visitors. Even I don’t like spending time with myself some times.
Some doctors and specialists say that if we don’t think about the pain, or if we do things to take our mind off it, the pain will go away. What actually happens is we have learned how to live with our pain and how to pretend that it’s not as bad as it is so we are able to “get on with it”, the pain hasn’t gone away.
It is much more difficult to get on with it during a flare, when the pain is magnified for some reason, be it the weather, stress, illness, injury or something. A flare could last a couple of hours or a year, maybe more, maybe less. For some medication may help, for others medication does nothing at all, but don’t panic, it’s CRPS.
Pain doesn’t just make people change; it changes people.
At first, CRPS changes things in obvious ways; the inability to wear shoes and socks, hold a pen, walk or stand for any length of time, the pain of putting on and taking off clothes, and so on.
Then there are the other “little” things; sensitivity to a slight breeze, and the chill of the refrigerator when you open the door, the pain of a gentle touch, and the way water from the shower feels like razor blades instead of water drops, so many other things, too many to list.
The swelling, discolouration and sweating are a part of your everyday, these things that stop you from doing those normal everyday things you used to take for granted; driving, shopping, cooking, and living a normal life.
Yes pain changes people, we have to learn how to adapt to our “new normal” and even that changes with treatment, weather, location and mood.
If we didn’t change maybe we really would go insane.
“in an instant everything changed; and it was never the same again.” soitsbeensaid.tumblr.com I couldn’t have said it better myself…….
For such a “complex” condition, CRPS can happen to anyone; and yet it only affects 26.2 per 100,000 individuals, at last count in 2007, when a large epidemiologic study was done in The Netherlands.
More than 75% of cases are caused by high-velocity, blunt injuries, but any injury which damages a nerve may result in CRPS. Don’t get me wrong, there doesn’t have to be evidence of nerve damage, CRPS can be triggered by other minor or major trauma as well; fractures 60% of cases, surgery 20%, injections, venepuncture, infections, sprains, burns, and in 10% of patients there are no identifiable events at all; no wonder they call it “Complex” Regional Pain Syndrome.
I am one of the 75%. My life was changed instantly; and no; it will never be the same again.
The x-ray was clear, but there’s inflammation, bruising, extreme sensitivity to touch and the pain, it feels like it’s on fire.
It’s been almost 6 months since you hurt your foot and your doctor just said he thinks it might be CRPS, as he hands you another prescription for the same pain killers that still aren’t working and a referral to see another specialist.
CRPS, Complex Regional Pain Syndrome, RSD, Reflex Sympathetic Dystrophy, Causalgia, Sudeck's Atrophy and so many other names; for a condition that some doctors still aren’t even aware of. This is a point I still find a little disheartening considering it was a young US Army contract physician, Silas Weir Mitchell MD, who first documented descriptions of the condition during the American Civil War (1861-65), and named it "causalgia" (Greek for burning pain), which he attributed to the consequences of nerve injury. I'm not going to bore you with all the history and jargon in my first blog, I'll spread it out over the time and do it in little bits and pieces, the point is sufferers now days have to jump through hoops, be accused of making things up, lose family and friends, see psychologists and psychiatrists and still be accused of insanity before getting a diagnosis.
CRPS is a condition that can cause so much pain, I have had mothers with CRPS say to me that they would prefer to go through labour and give birth 10 or more times, than continue to live with CRPS, and no, I'm not exaggerating. So why do we still have to work so hard for our pain to be recognised as real?