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Complex Regional Pain Syndrome (CRPS)
casscub
Posts: 138 The Mix Convert
Hello Everyone,
Some of you may know that i have done recently that i was diagnosed with CRPS (complex regional pain syndrome.) For me and my family this came partly as a shock because although we were told it was most likely what i had we all convinced ourselves that i did not have CRPS. Now i know that many of you will not have heard of CRPS before so i am going to share with you what it is and what its like for me some of the time too.
So What is it?
Well CRPS is an in-curable condition that can occur in two different way. The first way is through an injury where the pain is worse than the actual injury itself. It can also happen after having surgery to repair a broken bone or too. The second way which is not so common is when there is no obvious cause for it but you are experiencing a lot of pain that can be very uncomfortable.
What are the symptoms of CRPS?
There are many symptoms for CRPS and below is a list of them.
There are also more symptoms for this condition.
What has it been like for me?
For me this Journey has actually been really hard and long because it took them 10 months to work out what it was because i would always present with the same symptoms but nothing would show on X-rays or MRI's. When i was diagnosed with CRPS on the 23rd July 2014 it was really hard for me to take in because i knew that it was not something that would go away and that it was in-curable. When i was at the hospital and i was talking to my pediatric DR with my mum and we were told by him that i had it i remember that i broke down into tears because i knew that from now on i would suffer a lot of unbareable pain for the rest of my life. And he said that although theres a good chance that i will recover from it i will relapse in the future but that it could also spread around my body. Since the diagnosis i have been on a stronger medication but i am also starting physio and will be seeing a pain clinic that specializes in treating children. And at the moment although i am still on crutches and have been since january its not really bothered me because i now know why i am in so much pain that is hard to believe i am in when i dont show it. It also means that we have something now that we can work with so that i can get better even if i do replase in the future.
What is the pain like?
For me the pain is like a continual burning sensation all through my left leg and it feels like i am being stabbed with sharp hot pins. Its always really bad and is very hard to cope with because of how intense it is. Sometimes its so bad that i cant even wear trouses i have to wear a dress because it just hurts too much. Most of the time i do cry because its just too intense for me to deal with and its also really upsetting to knowing that it wont go away can sometimes make the pain worse as well.
What effect does it have mentally?
Mentally this has effected me a lot because i find it really hard to cope with alone so sometimes i will cry in my mums arms which then upsets her because she knows that there is nothing she can do to help me relieve the pain that i am in. It has left me feeling really down as well which does not help. It can lead to depression which although i dont have have been told that may get it in the future because of the psychological effect it has on my mood.
Extra information.
CRPS is one of the rarest conditions in the UK but between 200,000 and 1.5 million people have it in the United States of America. It is mostly found in Females and people as young as two have also been diagnosed with the condition. I know that there is someone else on here who has this conditions so i am not alone but it does show how rare it is in the UK. November is the awareness month each year for CRPS and Red Orange and Yellow are the colours that represent it because it represents the burning pain that you experience with the condition. Each year many cases are missed because its a poorly understood condition that effects people. Each year 1 in 3,800 people are diagnosed with it. And 3 out of 4 cases are female.
I hope you have enjoyed reading this blog and i really hope as well that it helps you to understand that its not easy to live with and can be really bad and that people do need you to be there and for you to not tell them that they are making it up because its life changing for each person that is diagnosed with it. Please help raise awareness for this condition and please please please be there for the people who need you when they are diagnosed with it.
Thank you
casscub
Some of you may know that i have done recently that i was diagnosed with CRPS (complex regional pain syndrome.) For me and my family this came partly as a shock because although we were told it was most likely what i had we all convinced ourselves that i did not have CRPS. Now i know that many of you will not have heard of CRPS before so i am going to share with you what it is and what its like for me some of the time too.
So What is it?
Well CRPS is an in-curable condition that can occur in two different way. The first way is through an injury where the pain is worse than the actual injury itself. It can also happen after having surgery to repair a broken bone or too. The second way which is not so common is when there is no obvious cause for it but you are experiencing a lot of pain that can be very uncomfortable.
What are the symptoms of CRPS?
There are many symptoms for CRPS and below is a list of them.
- Strange sensations in the effected limb
- Intense pain from just the lightest touch
- Difficulty sleeping
- Changes in skin colour and temperature
- Stiffness in your joints
- Difficulty moving the effected limb
- Small patches of fragile bone in the effected limb
- Changes in growth of nails and hair with the effected limb
- Sensitivity to water
There are also more symptoms for this condition.
What has it been like for me?
For me this Journey has actually been really hard and long because it took them 10 months to work out what it was because i would always present with the same symptoms but nothing would show on X-rays or MRI's. When i was diagnosed with CRPS on the 23rd July 2014 it was really hard for me to take in because i knew that it was not something that would go away and that it was in-curable. When i was at the hospital and i was talking to my pediatric DR with my mum and we were told by him that i had it i remember that i broke down into tears because i knew that from now on i would suffer a lot of unbareable pain for the rest of my life. And he said that although theres a good chance that i will recover from it i will relapse in the future but that it could also spread around my body. Since the diagnosis i have been on a stronger medication but i am also starting physio and will be seeing a pain clinic that specializes in treating children. And at the moment although i am still on crutches and have been since january its not really bothered me because i now know why i am in so much pain that is hard to believe i am in when i dont show it. It also means that we have something now that we can work with so that i can get better even if i do replase in the future.
What is the pain like?
For me the pain is like a continual burning sensation all through my left leg and it feels like i am being stabbed with sharp hot pins. Its always really bad and is very hard to cope with because of how intense it is. Sometimes its so bad that i cant even wear trouses i have to wear a dress because it just hurts too much. Most of the time i do cry because its just too intense for me to deal with and its also really upsetting to knowing that it wont go away can sometimes make the pain worse as well.
What effect does it have mentally?
Mentally this has effected me a lot because i find it really hard to cope with alone so sometimes i will cry in my mums arms which then upsets her because she knows that there is nothing she can do to help me relieve the pain that i am in. It has left me feeling really down as well which does not help. It can lead to depression which although i dont have have been told that may get it in the future because of the psychological effect it has on my mood.
Extra information.
CRPS is one of the rarest conditions in the UK but between 200,000 and 1.5 million people have it in the United States of America. It is mostly found in Females and people as young as two have also been diagnosed with the condition. I know that there is someone else on here who has this conditions so i am not alone but it does show how rare it is in the UK. November is the awareness month each year for CRPS and Red Orange and Yellow are the colours that represent it because it represents the burning pain that you experience with the condition. Each year many cases are missed because its a poorly understood condition that effects people. Each year 1 in 3,800 people are diagnosed with it. And 3 out of 4 cases are female.
I hope you have enjoyed reading this blog and i really hope as well that it helps you to understand that its not easy to live with and can be really bad and that people do need you to be there and for you to not tell them that they are making it up because its life changing for each person that is diagnosed with it. Please help raise awareness for this condition and please please please be there for the people who need you when they are diagnosed with it.
Thank you
casscub
"Yesterday is not ours to recover, but tomorrow is ours to win or lose"
Lyndon B.Johnson
Lyndon B.Johnson
0
Comments
No problem **helen** i just thought that it would help others to understand me and what i am experiencing and also help to raise awareness about the condition especially in november as its the awareness month for CRPS then
*hug*
casscub
Lyndon B.Johnson