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Alexandra

Phantom pain worsening over time.

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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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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

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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. 

Edited by Alexandra

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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

 

Edited by Alexandra
Grammar mistakes because I’m a Spanish speaker. English is my second language.

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