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Alexandra

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About Alexandra

  • Rank
    Newbie
  • Birthday 02/14/1974

Profile Information

  • Gender
    Female
  • Location
    North Carolina, U.S.
  • Interests
    I love cooking; Doing crafts like sewing, knitting, making jewelry; Love being outdoor hiking; Reading; Listening to music and dancing.

Profile Fields

  • Membership Type:
    Amputee
  • Amputation Type:
    AE and AK amputee
  • Amputation Date:
    07-19-2017
  • Amputation Cause:
    Texting driver hitted me

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  1. Alexandra

    Newbie

    Hi to both of you! Reading your posts put a smile in my face. I’m not literally laughing because I know the pain is really really real! 😉😂😢 I have tried the Silver coated socks before. Didn’t worked for me. But I’m guessing the problem with me, is my tumor messing on my PP. Even with my prosthetic leg, I have had sockets problems because of my Hormonal issues, gained weight, etc. I’m hoping to get a third socket too, one that finally can work just fine. My stump is almost too short. I prevented blisters before putting virgin wool under the affected areas, inside my liner. I don’t know if using it or the gel discs, will help to ease your pressure stump pain. But maybe worth trying. I have the SILIPOS DISTAL END PAD, GEL CUSHION and really helps me. Oh Donna, must be so hard being downstairs bounded. I have been trying to climb my stairs seated on my but. One step at a time, helping myself with my right leg and right arm holding part of my weight from the handrail. It’s hard and takes time, I’m slow. But I’m wondering if you would be able to go upstairs to take a shower or bath once a week maybe. That could feel like paradise. I remember the first time I was able to go under my shower, finally, felt soooo good. Living as an amputee is challenging to say the less. But keeping my mind looking at the positive things in my life really helps. But that’s not enough sometimes, and I have had really bad days. Thank you Angela to answer to my message. As Donna, I had forgotten about this Community, until your email showed up. Stump 👋 to both of you 😉😍
  2. Alexandra

    Phantom pain worsening over time.

    I read lately a couple of interesting articles. One in https://amputeestore.com/blogs/amputee-store-blog/new-theory-sheds-light-on-phantom-limb-pain?variation=A&_ke=eyJrbF9lbWFpbCI6ICJhY2FyaWJvbmlAaWNsb3VkLmNvbSIsICJrbF9jb21wYW55X2lkIjogIkhCREE5NSJ9 About the Phantom Pain. Usually I read inMotion Magazine and Amplitude Magazine. Both free subscriptions in the US. But you can read them online easily. Their website are https://livingwithamplitude.com/ and this next link is to subscribe to the newsletter https://www.amputee-coalition.org/limb-loss-resource-center/publications/inmotion/. They are not spam and don’t get your email box full of waste. They are serious and trustworthy resources. I have been trying to make the Best of my situation. I did the Training for being a Peer Mentor Visitor, I’m Volunteering with new amputees in two Hospitals in my area, trying to be busy and putting things in perspective. If I wasn’t here suffering this excruciating pain, I’ll be dead. Thinking that way, watching my kids to grow as a lucky part of it, helps me a lot to survive the day. Taking one day at a time. It’s hard. I’m still searching, hoping for new strategies to lowering my Phantom Pain. In the meantime, being part of the Amputee Community and receiving messages from you, really makes me feel better. I’m not alone. I’m not the only one living with this crazy and intense chronic pain. Thank you! Good luck with the GMI Therapy. I really hope that works for you. I’ll ask around here to try it too. Xoxo Alexandra
  3. Alexandra

    Phantom pain worsening over time.

    Hi Angelina. Thank you for your response. My PP keeps getting worse, now starting to affect my everyday activities, because the Pain become so intense that I need to stop, breathe, wait, I cannot keep up with what I was doing. It’s torture. Sleeping is the worst. Sadly Mirror Therapy never worked for me. Maybe because the nature of my accident being so violent. A distracted driver, maybe texting, crossed the center line and hit me head on on July 2017. I survived because the accident happened just a block away from a Fire Station with an Ambulance and the Hospital was less than 15 minutes away. I broke more than the left arm and leg. I have lost the Spleen, almost all of my molars because I broke my jaw too. A vertebrae in me neck, but only partially. Sinus, nose, etc. They couldn’t stop my bleeding so they cut my leg the first day. They tried to save my arm, but couldn’t. I feel my foot and arm pressed in a wrong position like under a vise or in an anvil. I cannot move them at all, I think that’s why the Mirror Therapy doesn’t work right. Now like 15-20 times a day I started to have shoots, stabbing and burning sensations. Before they were only a few times a week and only for a minute. Now they’re happening several times a day, very intense and last more than two minutes. I think my problem with the PP being difficult to treat, is that I have a brain tumor over my Hypothalamus, big, surrounding my Carotid artery, pressing the optic nerves and brain stem. The Drs don’t want to do surgery because the risk is too big due to the location. They guess is benign, a Meningioma. As I started having Hormonal issues, because of it, (the pressure over the Pituitary Gland is enough for it to behave as having an internal tumor). I think the tumor is my problem right now. But I’ll need to live with it probably. The Doctors doesn’t have solutions to suggest since I have tried most of them. And I don’t want to have any extra surgical intervention.
  4. About Me I have been an amputee for 20 months. AKA and AEA, left side, luckily right handed. After 10 months of taking Lyrica and Cymbalta (I used the Fentanyl patches and Oxy too while in the Hospital), having normal Phantom Pain that “comes and goes”, my PP started to get worse. The doctors gave me higher doses, but didn’t worked as expected. Tried Oxy again, but nothing happened. Just the side effects started to really affecting me. I have tried mirror therapy, tens machine, using a shrinker, essential oils, massage, mindfulness meditation, with no success. Time is passing by, but it’s not getting better as I read. I stopped all medications because of the side effects and the phantom pain is still the same. So, I didn’t went back to taking the drugs. That’s good for me. I feel like I’m seating on my leg and foot all day and night, numb, cramped, tingling, all together. My arm feels like it’s being pressed in a wrong position and if I try to move my fingers, it’s insupportable. Sometimes I feel the stabbing, burning and the electrical shocks too. But feeling my arm and leg just wrong 24/7 makes me tired. The only thing that works a little, is distracting my mind. Reading, cooking, cleaning. Using the prosthetist leg just focusing my mind on balancing and not falling, helps, but the painful feeling it’s still there, although not so intense. I’m learning how to live with it, which is good. I’m just getting used to it. I love being alive, watching my kids grow! I’m so thankful for that, than the pain seems a good price to pay for being here. But it’s not easy. I’m still waiting that with time, it’s starting to feel better. I don’t have sensible spots on my stumps. I can touch them. Is somebody feeling the PP like me? Do you have something that worked for you , which I can try?
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