I have CRPS too and feel like i'm going crazy, been fighting ACC for a year now , they say I can work 30 hours a week, I can't even manage around the house, I have my review today against ACC, cross fingers I win, so we have another victory for CRPS, I have just had the Pamidronate infusion and had a severe reaction to it and can't tolerate any pain meds, done acupuncture and reiki and the pain clinic nothing has helped. Tried Gabapentin, anti depressants, celebrex, catapress patches , does anyone have any ideas to try??? My accident was 20 years ago and 10 operations later feel worse off. I had a lis franc fracture, snapping 4 of my metatarsals and snapped ankle. Had arthodesis and fusions done.
Hi i sprained my left ankle about 3 1/2 years ago i got told i had crps when i was 14 i suffered with it really badly for about a year then went into remission, im now 16 and i had a hairbrush throwen at my foot about 5 weeks ago and now it is back, i agree that dont wear a cast or a moonboot because u become dependant on it and get scared to take it off because u know that something as simple as a bit of air is going to be excruciating. my mum was watching campbell live and aparently there is a neuro blocker that u can get in australia?? if u have any information cause u please make a comment ! thanks :)
For those of you that have posted that you have just been diagnosed don't let any doctor put a cast or moonboot on your leg unless you actually have a broken bone. Not using the limb makes it worse and it could progress faster. Get a great physio and get in earlier. The sooner the treatment starts usually means the better the outcome. I wish Emma all the best and pray it goes well and the money can be raised.
Hi, I was diagnosed with crps just yesterday. I fell through a doorway at work 6 weeks ago, leading up to the specialist, I was getting pain in all different regions of the foot, swelling, bruising. I didn't really realise how debilitating it is! The last 24 hours I felt like "it's all in my head". When I go to the gym, just squatting by a bench it painful on an area of the foot. I don't think I'll be going back to work for a little while, as I am an early childhood teacher and am on my feet 8 hours a day! I'm going back to my specialist in 2 weeks time, we will see if I end up in a cast or moon boot. Not sure where it is going now....
I have crts it took two years to come to this conclusion. Nukula medicine at Dunedin confirmed I had crps. Prof Elders and Prof Highten at Dunedin Hosp are the best Prof Highten is the best he has given me back some of my life I can walk yes I am restricted and can not work. I was in a wheel chair for the last 8 to 10 months. I was given by drip a drug to help my bones and I take daily 3200mil of gabapentin, 60 mil of LA morph, 2000mil paracetomal and many others. I was told that I need lots of vitamins hospital perscribed. I also take vitimin D once a month.My eye sight has deteriated alot also in the tow years,I got mucked a round a well till Prof Highten he took one look and new he just got it confirmed.Please feel free to get in touch with me.
I also have CRPS, i know on a smaller scale how debilitating it can be. Mine is manageable at the moment, i have had a couple of days reprieve. Ihave had mine for nearly 2 years, and have not been able to get a specialist to take me seriously. But thank you girls, i hope that thanks to you, people might be more aware. Warm regards, Maree
I at 20 years old have recently been told i may have CRPS along with other problems in my foot.My newest fassion accessorie is a moon boot alomost 24/7. my heart goes out to everyone with this condition as everything i have read is so true. its hard being off work for long periods of time and not getting support from people around you(i.e co-workers, boss etc) they can not see anything wrong therefore they believe nothing is wrong. none of us are going mad, its not in our heads, its real, and it hurts! but you can stop it from controlling your life! by taking control, being positive and doing fun things you can enjoy that dont use the affected limbs or areas, i enjoy painting wich suits me as i can sit down and rest my foot while enjoying it. thankyou to everyone who has shared there stories and symptoms it does mean alot to know you are not alone as it is quiet a rare condition especially at my young age :)
Hi, I too suffer from CRPS as a result of a sprained left ankle 7 years ago, it is now in my whole left leg, left arm and now I feel in my right leg. I cant work, and I am sick of drs who think if I can sit in my lazyboy for 8 hours I can work for 8 hours LOL Good Luck Emma
Thank you so much for helping bring RSD/CRPS to public awareness and thank you so much Caren, Emma and family for sharing your world with us.Also, a very big thank you to all who have made donations via Emma's website. Emma and family are very grateful and overwelmed by people's support and generosity. It's a lot of money for the family to raise on their own. One of the bonuses of donating via the website is that buying a brick means you can have it linked to a website of your choice, a good way to advertise a business.http://ihelpedemmaorange.webs.com/May you be blessed with a successful outcome, Emma xx
I was diagnosed with bilateral hands CRPS last year. Since then I have been around in circles by other health professionals not wanting to confirm this diagnosis. Instead they have their own theories. People see you in the street and do not understand what you go through, instead look at the seemingly healthy person - I have even been told it is because of people like me that are healthy that are causing problems with our ACC system. For someone like me that cannot tolerate all the conventional drug regime it is only exercise and NOI mirror exercises that get me through the day along with the understanding by those closest. Even then it is hard for them as they don't fully understand the pain. It is real and it is debilitating. You start giving up things that you used to do and take for granted, you start to have doubts about your sanity - is it in your head, am I making this up? But at the moment, each day is taken one step at a time. Keep smiling everyone and take care.