I have recently been diagnosed with CRPS after the worst 4 and a half years of my life. I fell over during a game of netball and twisted my ankle so badly that I knocked my foot out of place. I have since had 4 operations to try and fix my ankle. They have made it worse. Due to the amount of operations my nerves are very bad.

I'm 19 years old and struggle on a day to day basis to do something as simple as walk. My leg goes numb and the pain in my ankle is severe.

I have been tested on a numerous amount of medication, none of which have worked. I have reacted badly to most of these, ending up in A & E mostly.

I don't know how much longer I can deal with this

6 Replies

  • Hi jessvacher have u seen a pain specialist they can put u on the right meds that can help u with the pain, I have had crps for 6 years mine was that bad I had my left arm amputated i also have crps in my right hand and arm the specialist dose not no how long I will have the use of it then in 2013 I had a car crash a few months later I got it in my right foot and ankle I had to have my right foot amputated the pain specialist told me that if I did not have the foot removed it would spread up my leg, what medication was u on

  • Oh no way. That's terrible. I guess I'm lucky in a sense then. I hope you're okay.

    Mine has already spread and I get pain right up my leg. They've tried me on Amtryptline, Pregablin, Tramadol, Gabapentin. I have been poorly off them all. I'm back to see the pain specialist again on the 31st and getting accupuncture in a couple of months.

    I honestly don't know how much longer I can deal with being in pain all of the time. It's all I think about on a day to day basis and I never sleep.

  • When u go back to the pain specialist ask them to try u on OxyContin or oxynorm that's a liquid form of oxycodone, I'm the same I cannot sleep at night also I got to spend the rest of my life in a wheelchair I have careers that have to wash and dress me also make my meals, I'm also under the mental health because I have tried to take my own life. Has u pain specialist put u on the pain management course it works for some people but not all.

    I wish u the best of luck and I hope u get the meds that will help u with the pain

  • Auh pettle you wee soul , sounds like you need to learn how to control your pain other than analgesia , I know it's hard to try and think of anything else that's one of the reasons most of us are on here is to pick up hints and tips and support from others , more analgesia won't help in the long term , there are many options , have you tried a pain management group ? I was once like yourself and I was tearing my hair out , now I've learned lots of little techniques to help me on a daily basis it's not easy but I'm sure your willing to try anything. There is also the option of a pain psychologist who are very good , your GP or pain clinic should have details. Time to kick the butt out of your pain lol and fake control.

    Have you tried meditation , Physio ? , massage?

    I have gone through many different ways of managing my pain and I am still learning what helps .

    Your a young lady with your whe world ahead of you , I hope this helps ?

    SA 😉😁 x

  • See a massage therapist. Shortened muscle is very painful and it is painful to lengthen out shortened muscle to its proper length.

    I broke my wrist when in my 50's. It took months for me to get the pain in the muscles to go away. I was doing various exercises as advised by therapist I had seen to get the muscle to lengthen out again.

    It is unfortunate that the area of muscle behaviour causing pain is a subject that the medical profession know little if anything about.

    Yoga is a good practice to take up.

    Hope this helps

  • Unfortunately no real CRPS Specialist would ever recommend amputation, it is virtually certain to cause CRPS to spread or start in the opposite limb. In fact any operation carries a high risk of making things worse You need to get referred to Professor McCabe at The Bath Hospital for Rheumatic diseases.

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