Complex regional pain syndrome

Not sure if you got my last message, it's Carol here?? Are you on FACEBOOK perhaps can chat easier on there maybe?

My undersatnding of this is there are 2 types of theis Syndrome,It sounds as if your son has injured or knocked into something to start this causation.So little is being done in this arena because of its complexity and understanding why when he has not had a full on injury makes it hard to understand.However,I have researched so extensively just trying to undersatnd how a doctor can sever a nerve and cause this.or as they call it unsucsseful surgery outcome.But there are many cases of people of all ages who get this from just accidentally hitting a body part and this begins.Treatmnets are extensive and its a hard (Row) to hoe as they say.Research CRPS type 1 for your son and get the help he needs and deserves.

 

Hi Sandra, I also live in the uk. Iam sorry to hear about your son but I just got told a few days ago that I might have crps 😥 I'm 43 I got a full knee replacement a year n half ago. I was ok for about 2/3 weeks after the op in I was able to bend the knee but woke up one morning to my knee been stiff swollen hot to touch and really sore so I've been going back n forth to the hospital getting X-ray in all sorts for the past year n half so I've been referred to the pain clinic to see what they can do for me until I can get a bone scan done in September. That will be 2 years, i don't get out much coz I'm in pain 24/7 in it's getting worse every day can hardly put any weight on it so I've got to use a walking stick but I can't walk for long then I've got to stop in have a seat. I try in go out shopping on a Saturday with my daughter but I suffer the nxt day. Sorry for such a long txt. X

Hi Sandra came across an article which may be of some interest to your son. It concerns the use of compression chamber to treat CRPS

http://www.dailymail.co.uk/health/article-33877/Can-pressure-cure-pain.html

Following the patients story.....

The procedure is relatively simple. The patient enters a chamber that is sealed and then filled with compressed air until a pressure of 2.4 Atmospheres Absolute is reached - the equivalent of 14m of seawater.

The patient breathes 100pc oxygen either through a facemask or a transparent hood. The combination of pressure and oxygen physically dissolves more oxygen into the bloodstream - which may enable cells to take up more and improve their function.

Adrian's treatment involved a daily 90-minute session in the chamber over four weeks, where he breathed pure oxygen at an equivalent pressure of being 46ft (14m) underwater. 

'The pain relief was almost immediate,' he says, 'and by the end of it I was virtually pain-free.' And the side-effects? 'Your ears have to be able to withstand the pressure change, but apart from that the worst part of sitting in the chamber was boredom.'

I hope this helps in some way x

Hello everyone I'm a newby but just wondered how did your drs decide you had crps? What tests etc

Hi Sandra,

I'm sorry to hear about your son.

I've had CRPS for the past 3 years in my right foot. I'm grateful that I have a very experienced and knowledgable GP. She referred me to The Royal National Hospital for Reumatic Diseases, they have a specialist CRPS unit. They are renowned worldwide. It's headed by Professor Candy McCabe. She has done numerous studies on this awful condition.

I was in a very bad state last year, both mentally and physically. I was admitted to this unit at Bath Hospital for a two week rehabilitation program as an inpatient. It was the best thing which has happened to me. They are nothing less than Brilliant.

It's on the NHS. You should take advantage of this excellent treatment centre. Just request from your GP to refer your son. Most GP are unaware of this CRPS service. Here is the link:

http://www.rnhrd.nhs.uk/page/79

I have changed many things for the good since being there. They do daily Physio, Hydotherapy, Ocupational Therapy etc...

I've already been twice in the past 12 months. I'm due in again next month.

Hope this helps.

Hi, my son had a toe removed at 8 months and was severely delayed in walking. He would scream in pain as a toddler and refuse to bear weight at all on the same foot. As he got older he complained that the foot, ankle and leg was severely sore. We have been attending rhumatogy and orthopaedics for years without any diagnosis or relief. His pain has spread and he can't walk any more than 5 minutes withou saying he's in severe pain, it can come on like a wave even without movement. He has a slight discolouration of his legs when the pain hits and is so sensotive to touch. Now he is no longer doing PE at school, he's almost housebound. I had to complain to the NHS and demand a referral for physio and pain management clinic. I have been researching conditions and came across CRPS and I also wonder if he has dyspraxia due to his limited mobility and inability to basic tasks like toe shoe laces or use a knife and fork. He's highly intelligent and social me but he's becoming more depressed and the pain is becoming a real issue. I'm at my wits end and as he is now 10 I wondered if anyone can empathise or offer any advice of how I would have this condition diagnosed formally.

Thanks from a very exhausted mum!!