An update on CRPS and amputation or not !

When I asked the other day what people thought about amputation after having a knee replacement when you have CRPS . I want to clarify something ! I no if I have CRPS the pain would not go away at all but the point of me wanting an amputation is because I can't use my knee very well and it's stopping me from doing things I love like being active. If u could go and do some things I love to do even with having the pain from CRPS then it would make me so happy. I'm just not sure if my leg now is going to improve at all. I'm loosing strength and mobility and can't loose weight because I can't be active. I hope I have explained things a bit better

Any input is good input so thank you in advance

5 Replies

  • Currently If you have a amputation it is virtually certain the CRPS will spread further throughout your body, in fact any operation is virtually certain to cause it to spread.

    It's taken me over 4/12 years of fighting but we are know forming an All Party Parliamentary Group on CRPS and I am putting together a medical team to give evidence and I am sure everyone of them would say no

  • thank you for your great info, the parliamentary group on crps is a fantastic idea. good luck and tiny gentle soft hugs

  • Hi with regard to amputation of a leg I would strongly suggest against it as you will find yourself in a worse boat than now. My daughter opted for amputation of her left leg due to peripheral nerve pain and damage due to severe diabetic complications. She regretted it as she lost her mobility totally. She was only young around 28 years old when she made this decision. You may have limited activity now but I really believe that if you can keep your leg for as long as possible you will not find yourself stuck in a wheelchair with no activity for the rest of your life. Think very carefully bfore such a major decision please. Wuzzy

  • The point I was making in my previous comment to you was that, not only would the pain not go away, it would be likely to to spread , therefore, I felt it would make it impossible for you to actually do any of these things you want to do, which defeats the object of your amputation entirely.

    As I also said, I have had this for 22 years, I was a 20 year old female who was headed for life as a Professor of History, my aim since I was a child. I lost my independence, my mobility and any chance of a normal life with a family or even partner of my own. In fact, I am stuck at my parents house, the only time I leave is to visit the Dr or Hospital, I have myriad other health problems, so I do understand the desire to have a life and do all the things you used to do.

    But, sadly, that sometimes is not to be.

    It becomes about keeping yourself sane, in one piece and mobile for as long as possible.

    I have never had weight issues, so I can't comprehend that, the pain really affects my ability to eat anyway and I am also a Vegan with many food allergies, so that probably helps ! I don't eat animal fats, you see, so they are the most obvious problem with immobility and weight gain.

    I wish you all the best with this.

    We all want our lives back; or at least some semblance of normality. It's just a very difficult balance, really.

  • Hi Chawner,

    When I asked about amputation, the pain specialist said it would only make things worse - not only would the current pain still be felt but the CRPS will most probably just move into the mirrored limb.

    Sorry that is not the news you wanted to hear.


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