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Heather Mills - Amputee Forum


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About Angelina

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  • Amputation Type:
    Left Above Knee
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  1. Angelina


    Donna, you poor poor thing, things must have been so difficult for you especially as a child going through so much! I am the same as you I dont know whether it was the right thing to do particularly when I'm in so much pain! We seem to have very similar things going on in life...I too dont go out, that started after the sepsis when I too was dragging a useless leg around and has only gotten worse since my amputation, in hate the way people look at me and get so angry at their stupid comments. My favourite one of all is the judgey do you have diabetes...because I'm bigger (I've put so much weight on since the sepsis!) I must have had diabetes that I clearly didnt manage properly leading to the leg to come off! and the looking like I've got 3 heads or something 😠 Yep I'm offay with the wearing of a mask day in day out for other people...think positive Angela you've still got your life, things could be worse Grrrr what the hell do they know! When I first started using my leg I was getting messages which were lovely to begin with but then every time I looked at my phone someone else would be telling me I was a hero, i was an inspiration people were soooooo proud of me etc... after a while I just wanted to shout at everybody I dont want to be a hero or an inspiration I just want to be me! Friends and family are so well meaning but they cant ever understand unless they have been through what we have, god the CRPS is so difficult for people to understand let alone pp or any of the other delights that go along with amputation! You certainly weren't rambling lovely and even if you were ramble away😊 I am a massive rambler too lol Did you say you were from the UK if so where abouts, I'm from southampton...I'm guessing that Alexandra is from the US as she seems to be around at a different time to us! Angela xxxx
  2. Angelina


    Oh ladies I am so so glad that I have found people that can totally get what I'm feeling but, im so so sorry that you are going through it too...I wouldn't wish this crap on anyone! I spent 3yrs sleeping downstairs in a hospital bed and finally the past few months the council have changed my bathroom (which sounds exactly like yours Donna) into a wet room and installed a stair lift! Sounds wonderful doesn't it...was supposed to give me my independence back, no one put any thought into how I was going to move around upstairs so during the day once hubby has gone to work I'm stuck downstairs using a commode with a carer coming in to make me lunch. Then at 6pm the carer comes back for me to have my bedtime routine done (42yrs old and going to bed at 6pm...so rock and roll!) So she takes me for a shower moving me around as best she can on the commode then I have to shuffle from outside the bedroom to get into the bedroom because they cant/wont widen the doorway to my room. Then that's me, stuck in the bedroom back to using the commode...I've been told I'm lucky and I think maybe I am because I know there are loads of people that dont even have this option but, I feel heartbroken at being pushed from pillar to post like a piece of furniture. If I'm not crying because of the pp/crps im crying because of the whole situation. Alex, I'm so sorry that you had such an awful accident, I cant even imagine how things have been for you. My story isnt as ferocious, I came to lose my leg after a planned surgery. The surgery went well until the wound broke down, I developed a 4inch by 4inch open wound that was mismanaged by everyone involved in its care. Eventually my surgeons registra decided that to keep the original surgery from failing i need to go back to surgery for what they call a manual manipulation but during this he decided he would close the wound....the wound had infection tracking up my leg and also down the leg so 3 days later I collapsed with sepsis. I spent 2 weeks in intensive care, the first of which I had 8 surgeries to clean the inection, I lost the surrounding muscle structure to my knee and they took alot of bone breaking my femur and tibia. They talked about taking my leg then but they felt that it was best they didnt at the time. This was my first introduction to CRPS and the hell it bought with it! I had to wear a metal brace to stop my knee collapsing 24/7 which made me delirious with pain so I begged and begged my surgeon to take the leg and finally after a year of begging here we are...1 leg lighter! Donna, how did you come to have your surgery? Is your CRPS limited to your leg or has it spread? I'm so pleased to have met you girls, I saw both of your posts were a while ago but have been so lonely and craved someone who could understand me so I thought why not just answer! and yes Donna pp is ABSOLUTELY real...I'm not clever enough to dream up the ways in which it manifests! Mine right now is manifesting as if I'm stood in a pan of bubbling boiling water so that the 'foot' feels like it's on fire and burning and then the water is splashing up my calf 😔 I am in the UK where abouts are you ladies from? I'd love to be able to get to know you both so that we can share not only the crappy times but also the lighter times in life! 😊😊 Much love Angela xxxx
  3. Angelina


    Hey Donna, To be honest I'm much the same as you are! I spend my nights awake wondering if this was all worth it! Would I have been better off with a leg that was equally as painful, but at least tangibly there if that makes much sense? I'm so sorry to hear that you are still struggling too! It's just lousy isnt it. I am trialling a new kind of shrinker/compression sock as we speak...its made of umbrellan and is supposed to repel electromagnetic fields and other atmospherics which someone somewhere has said could well be a cause of phantom pains. I'm only wearing it a couple of hours a night atm but in the next few days I should be wearing it all night ...I've been waiting to try it for a while so am holding out hope that it will work. I'm also doing GMI therapy which is supposed to be a gentle lead up to mirror therapy...its still a major trigger for me atm but I'm persevering. I had my current leg fitted on Wednesday so am yet to try walking on it...I was cracking on really well with the first leg and then I got an infection in peggy (I still struggle with the s word! Sad huh!) So wasnt able to wear it and then shortly after i had got the go ahead to start wearing the leg again i fell from my bed no more than 1ft off the floor and fractured my femur in 2 places. The end of peggy Is still super sensitive ...the first session is on Monday so fingers crossed it will be ok. Keeping peggy warm seems to help ease the pains but truthfully I've yet to find anything that completely takes the pain away. I dont know that physically me rocking back and forth while rubbing peggy does anything to really take the pain away or if it's more psychological but it does seem to ease things, much the same as jiggling her around changes sensation to something not so tough to deal with...but who can do that all night! I agree with you regarding friends and family...mine also have been great to an extent but they dont get it and maybe that's because no one can unless they have experienced it? I've even had friends tell me it's called phantom pain because it doesn't exist...its all in your head! Cheers now you're saying I'm making it up! Not helpful!! I'm going to post this now as my phone is dying and in typical amputee fashion I cant reach the charger! But I'll carry on tomorrow (as long as you dont mind!?) Angela xxx
  4. Angelina


    Hey Don, I had an above knee amputation also due to CRPS. I'm struggling with phantom pain also. Equal often to the amount of pain I was in before the amputation. I wonder how you are getting along now? and if you found any way/s to combat the pain? Angela xx
  5. Angelina

    Prevention of Phantom Pain

    Gil, I have severe on going phantom pain morning, noon and night 😞 I had a general anesthetic plus a nerve block for my above knee amputation. When the block had worn off I had no phantom pain at all until maybe 3mths after, the pains have gotten worse and worse until now I'm feeling pain 24/7. This is much like the CRPS I had that lead to the amputation in the first place!
  6. Angelina

    Phantom pain worsening over time.

    Hi Alexandra, I am feeling exactly the same. To begin with I barely had any phantom pain but as time has gone on it has got worse and worse. I have been having probably the worst episode the last 2 weeks where I have been having pain 24 hrs a day. The normal pattern for me is pp just at night but the past 2 weeks it's been constant! I am just trialling a new type of sprinkler made by issue. It is made with something called umbrellan which as far as I can work out repels electromagnetic waves and other atmospherics. Would you be able to ask your prothetist about it and maybe give it a try? I cant say whether it's working or not really as I'm only wearing it a couple of hours a night to get used to it but, I will be wearing it all night in the next couple of days so will maybe have some more results to share. Other than this I am also at a loss as to what helps. Have you tried GMI therapy? I am just starting to try that also. My physio told me it is important that you do this and lead up to mirror therapy (I dont know about you but mirror therapy just made me feel like I was losing my leg all over again every time the mirror was removed!) Apparently the GMI therapy is a gradual lead up to mirror therapy. Xxxx