Your experience of crps

  • 2 Replies
  • 1182 Views

BigB90

  • *
  • Silver Member
  • ***
  • Posts: 28

Your experience of crps

  • on: 20 Jan 2013 10:54AM
I've had chronic burning and aching pain and muscle wastage in my left left for 5 years, which started soon after a fall while figure skating. It gets worse when I stand or walk for more than 3 minutes, and when I sit in a chair for more than 20 minutes, so I spend most of my time lying down. The only exercise that I can do that don't affect it are gentle cycling and swimming.

I have seen 4 GPS and 4 consultants and 2 physios but none of them can figure out what's wrong. Ridiculous thing is I have had MRI scans on my brain, spine and pelvis, but never of my leg!

My doctors have now basically given up and are just sending me to a pain clinic because they can't figure out what's wrong.

On another forum someone suggested crps to me a and looking it up it does sound similar, only thing is my leg isn't sensitive to touch. Could it still be crps or does this rule it out? Should I suggest it to my gp?  It's driving me crazy! I'm only 18 and I rarely leave the house!

neurochick

  • *
  • Diamond member
  • ****
  • Posts: 274

Re: Your experience of crps

  • on: 21 Jan 2013 07:25AM
bigB90

CRPS is a complex diagnosis to make and it is a diagnosis of exclusion.  It can only be made if all of your clinical signs and symptoms meet a very specific diagnostic test and, in addition, there must be NO other diagnosis that can better describes the signs and symptoms you have.  It is a clinical diagnosis so there is no definitive test for the condition.  Most tests that could be performed are used to rule out other conditions. 

It's impossible to say on here whether your clinical signs and symptoms are CRPS - didnt you mention a back problem in another post?   A back problem could be causing all of the symptoms you have down the length of your leg with no CRPS being present.  In fact there are lots of conditions or problems that can cause the main symptoms of CRPS.  I only emphasise this because if you are incorrectly diagnosed with CRPS, this will largely stop your doctors looking to see if there could be another cause for your pain etc such as a treatable nerve compression in your back.  You want the diagnosis to be right so that any treatment options you have are properly assessed and available to you.  CRPS typically attracts care that is targeted at managing, controlling and reducing the severity of symptoms plus increasing function because CRPS isn't curable.  There are some people who do go into remission with more agressive and invasive treatments especially where it is diagnosed very early.  Whilst it is possible for people to go into remission, all of the longer term studies say that the majority of CRPS sufferers have some long term problems with pain, loss of function, depression and disability. These can be on a spectrum of very minor right up to totally disabling.

Ideally you would be looking for a referral to an experienced Pain Management Consultant who is up to date with CRPS research and clinical practice but i have to forewarn you this is virtually impossible to find in the UK.  You should still be able to see someone who has enough knowledge to diagnose you accurately though.  After that, if it is CRPS, I suggest you start educating yourself on the condition and treatment options. You will need to be your own advocate and you should expect to have to push hard for all of the help you want. 

A good start is to download the 2012 Royal College of Physicians UK guidelines for diagnosis, referral and management of CRPS in adults.  It's easily available on their website and lets you see what has been decided should be available to patients in the UK.  However if you are looking for information about living with the condition then I recommend starting at the RSDSA.org website.  Its the main US charity for raising awareness and supporting CRPS sufferers.  The information is generally accurate and mostly up to date.  A massive amount of what is out there on the internet on CRPS is out of date and completely wrong.  The Netherlands are the current global leaders in CRPS research and treatment and the UK is years behind them.  It's worth looking at what is happening in the Netherlands and other countries but be aware that many of the drugs and treatment options are simply not an option in the UK.

I have had Type 1 CRPS for about 5.5 years along with reactive depression.  I've done lots of research, been to see global leaders in the condition abroad and I've made it a project to be knowledgable on the condition. In my case, it has proved to be seriously disabling in spite of diligently pursuing all of the suggested physio, meds, blocks, psychological therapies etc, etc.  I hope that you are not diagnosed with CRPS but if you are there is information out there.  So keep us in the loop and perhaps we can help going forward.


BigB90

  • *
  • Silver Member
  • ***
  • Posts: 28

Re: Your experience of crps

  • on: 21 Jan 2013 09:04AM
bigB90

CRPS is a complex diagnosis to make and it is a diagnosis of exclusion.  It can only be made if all of your clinical signs and symptoms meet a very specific diagnostic test and, in addition, there must be NO other diagnosis that can better describes the signs and symptoms you have.  It is a clinical diagnosis so there is no definitive test for the condition.  Most tests that could be performed are used to rule out other conditions. 

It's impossible to say on here whether your clinical signs and symptoms are CRPS - didnt you mention a back problem in another post?   A back problem could be causing all of the symptoms you have down the length of your leg with no CRPS being present.  In fact there are lots of conditions or problems that can cause the main symptoms of CRPS.  I only emphasise this because if you are incorrectly diagnosed with CRPS, this will largely stop your doctors looking to see if there could be another cause for your pain etc such as a treatable nerve compression in your back.  You want the diagnosis to be right so that any treatment options you have are properly assessed and available to you.  CRPS typically attracts care that is targeted at managing, controlling and reducing the severity of symptoms plus increasing function because CRPS isn't curable.  There are some people who do go into remission with more agressive and invasive treatments especially where it is diagnosed very early.  Whilst it is possible for people to go into remission, all of the longer term studies say that the majority of CRPS sufferers have some long term problems with pain, loss of function, depression and disability. These can be on a spectrum of very minor right up to totally disabling.

Ideally you would be looking for a referral to an experienced Pain Management Consultant who is up to date with CRPS research and clinical practice but i have to forewarn you this is virtually impossible to find in the UK.  You should still be able to see someone who has enough knowledge to diagnose you accurately though.  After that, if it is CRPS, I suggest you start educating yourself on the condition and treatment options. You will need to be your own advocate and you should expect to have to push hard for all of the help you want. 

A good start is to download the 2012 Royal College of Physicians UK guidelines for diagnosis, referral and management of CRPS in adults.  It's easily available on their website and lets you see what has been decided should be available to patients in the UK.  However if you are looking for information about living with the condition then I recommend starting at the RSDSA.org website.  Its the main US charity for raising awareness and supporting CRPS sufferers.  The information is generally accurate and mostly up to date.  A massive amount of what is out there on the internet on CRPS is out of date and completely wrong.  The Netherlands are the current global leaders in CRPS research and treatment and the UK is years behind them.  It's worth looking at what is happening in the Netherlands and other countries but be aware that many of the drugs and treatment options are simply not an option in the UK.

I have had Type 1 CRPS for about 5.5 years along with reactive depression.  I've done lots of research, been to see global leaders in the condition abroad and I've made it a project to be knowledgable on the condition. In my case, it has proved to be seriously disabling in spite of diligently pursuing all of the suggested physio, meds, blocks, psychological therapies etc, etc.  I hope that you are not diagnosed with CRPS but if you are there is information out there.  So keep us in the loop and perhaps we can help going forward.

Thanks so much for that info :) I really hope I'm not diagnosed with this as like you say there is no cure. I do have a back problem but I've had that pretty much since I could walk. Ive had countless scans on my back which show nothing, and nerve wise, I've seen a neurologist who has told me he is 99% sure it's not nerve compression but is sending me for an electrical conductance test (I think that's what he called it) just to be certain,  but again, as per usual it's been over a month and I've heard nothing so far.

Will keep you all in the loop when I hear something, and when my exams are over I am going to head down to my gp and try and convince her to send me for a scan of my leg. As much as I obviously don't want anything wrong, I'm just getting so desperate for a diagnosis! Fed up spending everyday fantasising about sawing my own leg off :p