Before I had my knee replaced I was running and climbing and being very active but now having CRPS and not being able to even go for a hike or walk very far so I was wanting to no what you guys think about amputating ! If I had my leg amputated would I be able to get a fake leg that I could then run on and do all my active things I love to do on it . If I am going to have pain anyway then why not have a leg that I can use and do it all on.
I no this sounds stupid but I wanted to find out what everyone thought
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Chawner
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Hi Chawner, I started with CRPS in my left knee, which has now spread to my right knee as well. I totally understand how you feel, I also asked my doctors and lain consultants about amputation, and they said even if they do that as it's the nerves that are damaged there is a good chance I'll still have the pain associated as phantom limb syndrome. I've had a dorsal root ganglion stimulator fitted for both my left and right hand side (I'm just waiting for revision surgery to my right hand side implant) and these stimulators are very good at blocking the pain signals. But each case is different and where one outcome works for one person it might not in another. The best thing I can suggest is discuss it with your pain consultant. If you don't have one ask to be referred to a specialist centre, I'm under The Walton Centre in Liverpool, but discuss it with someone like that, they'll be able to give you the full ins and outs of it. I have heard of others who have amputated because of CRPS with mixed results. But every case is different as I said before. I have fingers crossed for you that you can get some relief, it's not a well known condition and there are a lot of people who try to do their best but the pain teams at specialist centres do have a very good idea of what will work and how best they can help you. Sorry if I sound a bit down on amputation as I thought myself that amputation would be the best to end the pain, but it might not be.
Hi Yogibe, I'm under Dr Sharma, the whole pain team at The Walton Centre are good, the treatment and level of knowledge there is great. I think it's good how you can discuss anything and get an honest answer (even if they are not sure) what treatment have they given you for your CRPS?
Thank you for reying to me the info you gave me is good info. I don't want an amputation to get ride of the CRPS because I understand that it won't help that but with having a replacement knee I have found it very restricting and the pain from it is unbearable due to the CRPS. I was hopi v that if I got rid of my knee and had a prosthetic then I would be able to do the things I used to do even if I still have the pain from having CRPS. My knee is useless !
Hi Chawner, have you been referred to a pain team to help you deal with your CRPS? Has your surgeon who put the knee replacement in said anything about why it's not functioning properly? I still think amputation might cause more problems that it would solve, as there would be the risk of further spread, and also your stump could become too painful to wear a prosthetic. I would say discuss it with your surgeon who put the replacement in, and get a referral to a plain team who can help give you the full insight on the positives and negatives of having something like that done. The way I would approach it would be to find out if there is anything that can be done to help your knee replacement function better, as this will always be a better option than a prosthetic. Hope you get relief and things work out for you!!
I haven't seen the surgeon since the week after I had my knee put in, he is the one who diagnosed me with CRPS in the first few weeks and got me in to see the pain specialist within 2 days. Ever since then I have only see pain Drs or my GP. No one seems to be really helping me or that's how I feel anyway
Hi chawner no I don't think u should have u leg amputated because u will still have crps I know because I had my left arm amputated and I still have the crps and I cannot have a fake arm because of the nerves in my stump are to damaged and that what u will if u have u leg amputated plus the fake arms and legs weight a lot that's if u have the nhs ones but it will cost u a lot off money if u want to pay for u own
I have had RSD/CRPS for 22 years so I understand your pain and frustration.
However, I also know that amputation is really not a solution.
The pain comes from the brain, not the affected area, so the removal of the limb, in this case, will do nothing to ease that pain; the brain will still view it as being there. It might even increase that pain as a result, or spread it more widely to other areas. I would also doubt that, being in the pain you are now in, by giving you a new limb, you would even be able to do all the things you suggest, with a false one. I would expect it would be too painful. And I also know of sufferers who have been unable to wear a prosthesis because the pain in the stump is too great.
Lots to think about.
When I first became ill, I almost lost my leg; I battled to save it.
As the medics here were, by and large, useless, a friend in America looked into the disorder and what help I could get over there at the time. If I had gone to be treated, they would have amputated my leg straight away. That was what they did back then. They then realised it was one of the worst options and worked on treating the nervous system, the root cause, with varying degrees of success.
I have had little help these past years and hardly any medication, even at the worst stage all those years ago.
But I still have my leg and I do not intend giving it up without a fight, regardless of the fact that my life was stolen from me at the age of 20, really.
I'm sorry but I'm going to disagree with everyone Ihave had CRPS since 2000 from a mozi bite on my left calf would you believe
I had been asking for an amputation for years and eventually talked my pain consultant into going ahead with it.
The offending limb was removed in May last year and I can safely say it has been the best thing I could have done.Yes I phantom limb pain but it not as bad as the pain from CRPS but I dont have to worry about grandchildren banging it or bumpy roads etc
You have to be aware of the fact that your CRPS can jump to another limb but in my case i felt it was worth the risk as I had exhausted all the other avenues of treatment
I dont think your pain consultant would go down that road till you have tried everything else as well.
Best of luck with whatever you decide because at the end of the day its up to you whether to go for it or not
The practicalities of a false limb depends on the patient and their fitness levels before loss of their limb I have seen marvelous things at the limb centre I attend in Preston so yes if your determined you can run up mountains again .
Hope this helps but i suspect it muddies the water even more for you
CRPS is a diagnosis not a cause. I have my own theories on certain types of CRPS which may match what you have or may not.
As you have by now discovered the medical profession is very good at handing out pain killers and not so good at providing effective solutions that involves manipulation therapy.
A lot of pain is caused by muscle misbehaviour. A way to deal with this type of pain is to replace muscle misbehaviour with better behaviour. This is not a cure for the underlying cause, however the improvement in muscle behaviour can reduce experienced pain considerable.
I know of no one therapy that provides all the answers as different therapies handle different aspects of the muscular system.
A McTimony chiropractor will be useful for dealing with any muscles spasms in the back. A masssage therapist with help stretch out any over contracted muscles.
A yoga teacher can help keep your muscles from being to tight. An Alexander teacher will help you to have better posture and better muscle coordination.
Mindfulness and meditation (Buddhist practice) will help you become more aware of yourself so that you can reduce the faulty activities which lead to painful after effects. It takes time to learn what your body does and how it actually works.
And lastly learn to have cat naps doing the day to make up for lost sleep at night. Sleep is very important for good muscular control.
Yes this helps a lot thank you. So really I need to go back to basics and learn how my body reacts to different things before introducing them to each other and then once I work out what happens were when and how then I should start beginning to understand how or were my pain is effecting me most and then try and get the most out of what I have and try and improve it.
It is a good reasoned answer. However things do not work that way.
The big pain cannot be tackled it is too big. It is the little things that are highly important because you can do something about the little things. As you tackle the little things you will find that you have made an influence on the big thing.
Quite often things have to tackled all at once, because everything effects everything else. You end up constantly refining and never stop.
There is something called stress overload. When a system hits the stress breakdown point a very little stress increase will cause system breakdown. This is why the little things that can be tackled are important. By removing the little stresses you move further away from the stress breakdown point.
The other thing to consider is that some pain effects do not occur at the time of stress but a few hours afterwards. This is because tissue gets stressed and as a result of this stress gets inflamed. It can take a few hours before the inflammation is enough to cause discomfort and pain to surrounding tissues.
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