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CRPS - is there an alternative to amputation?
Hi, I am trying to get some help/advice for my dad. He broke his ankle in two places 7 years ago now. Long story short since then he has been diagnosed with planta faciatius which then years later they said it was actually CRPS. In these years he has had a second operation to try and fix it, cortisone injections, acupuncture, physio, hydrotherapy and evening had some screws removed. Nothing has helped and has only made the pain worse. He has been on so much medication over the years but at the moment his main pain relief is oramorph and codeine. Today he had an appointment with a new surgeon, she said basically amputation is the only option. My dad is fully against this and really doesn’t want to go down that road but is co tangly crippled in pain, completely house bound and depressed. He has put on 5 stone since it happened due to not beong able to move about. He also has specialist inner soles to help as his gait went on his hips. Just hoping someone may know of any medication that may help or an alternative to amputation. He asked about fusing his ankle and they have said it’s pointless 

Replies
Welcome to the community and I am so sorry to hear about your dad and his struggles.
I didn't know much about CRPS and have been doing a bit of research, I found this woman Helena Stone who has been doing a lot of campaigning about CRPS. She says
"I was in chronic nerve pain, so I always had a level of pain and discomfort. The pain could easily and quickly reach levels where I would be in agony. I struggled to live a normal life. I spent at least 80 per cent of my time in bed.
"After amputation, I woke up with no CRPS pain. I have some phantom sensations and a bit of surgical pain but it is very well controlled."
"Stay strong, positive and fight for what you need. If you are thinking about amputation, please don't underestimate the magnitude of that course of action. It seems a very tempting action when in so much pain 24/7, but the risks are very real and it is not a cure. Remember its okay not to be okay, seek support and speak to people."Have you seen the CRPS UK charity? They have an email address [email protected] where you can get in touch to chat with them.
Also Limbless is a UK based charity that offer support and information about amputation and I wonder if they could help at all? They have a helpline on 0800 644 0185 and you can email them on [email protected]
We cant offer any medical advice on the community, but I am glad you reached out to talk about this and I hope someone can offer their personal experience and help.
Senior online community officer
His thread is entitled `I`m so lucky lucky lucky` Not sure where it is...I`ll have a scout and get back to you. It`s worth a read. x Back soon
Hi again...found it...the poster is CaptainWull and you can find his post in DLA/PIP/ESA. Or just go to the search box above and type in `I`m so lucky lucky lucky`.
@hengster has just joined the community and they have CRPS.
Scope
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In the meantime, i have changed my diet drastically in an attempt to reduce any internal inflammation. As certain foods can cause more inflammation which leads to more pain. I have followed an Auto-immunue Protocol Diet which i have read up online about and you can google to find out more about this if you should wish to. I am by no means a medical or nutitional expert, so please take what I've written with some caution as everybody's bodies are different. But basically i have stopped eating dairy, nightshade vegetables and anything grain based. I have even gone to the extent of not eating any form of beans and nuts as this is more strict. Foods can be re-introduced once you know what your body can tolerate. But for me, I am hoping to see someone who can advise on nutiriton at some point, once i have further tests, to know what my body can tolerate and not.
I am not taking any presribed drugs, even though it has been offered to me. And i do alot of meditation to not think about the pain so much. It helps me to fall asleep. I currently rub a CBD balm onto my leg which helps aluttle to relieve the pain.
i dont know if any of what i;ve written may help as your dad has been suffereing much longer than me, and had a longer journey with it.
Rachel