Prosthetic legs, how phantom pain can ruin your day

How Amputee Phantom Pain Can Ruin Your Day

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All Scripture references come from the King James Version of the Holy Bible (KJV)."

What caused my amputations?

Life as a quadruple amputee woman has been a challenge, to say the least. The amputee phantom pain alone has been extremely painful.  My hands and feet were amputated due to the sepsis I developed from a flesh-eating bacteria. Sepsis is the body’s extreme response to an infection. Without timely treatment, sepsis can rapidly lead to tissue damage, organ failure, and death. In my case, my kidneys started to shut down. When something like that happens, your body goes into overdrive to protect its failing organs.

The blood from your extremities works to support things like kidneys and then it leaves your hands and feet. When that happened to me, they were able to save my life but not my hands and feet.

Dealing with amputation:  Nerve sensation

Amputation is the removal of those body parts that are no longer useful. My main point today is that when they removed my hands and feet they sealed off my vessels and nerves. That forces your nerves to rewire. In many cases, you can still feel pain in a limb that is no longer there. It’s a bizarre sensation.

Before I go into my amputee phantom pain experience, I want to explain that since the nerves are sealed off, it causes severe pain, regularly. I’m sure you’ve seen those commercials for fibromyalgia where the nerves look like they are on fire. Now, I do not have fibromyalgia, but when I see those commercials it reminds me that maybe the pain that I feel daily could feel similar to someone who does have it. I don’t know. However, what I do know is that I require pain medication so that I can feel somewhat normal and live a healthy life.

serenity prayer, God grant me the serenity...In my case, my pain medication comes in the form of an opioid patch. Our skin acts like a sponge which makes it possible for medication to be absorbed through it and into the bloodstream to alleviate pain. In my case, the medicine is released slowly for 72 hours and then I need to replace it. My patch basically takes care of everything, with the exception of amputee phantom pain.

Dealing with amputation:  Amputee phantom pain

Amputee phantom pain is a pain in the part of the amputated limb that is gone. It’s difficult to picture if you don’t experience it. However, if I walk a lot, I sometimes feel achy in my ankles. I don’t have ankles. Weird, huh? Most of my amputee phantom pain occurs in my feet. Which brings me to the last two nights.

As I was sleeping, I was feeling this sensation. It starts with a very small area of my foot that hurts but it’s a very big pain. The feeling is like someone has hit the side of my foot with a hammer. But it comes fast and hard and it’s very, very painful. After several seconds, the pain subsides. Every minute or 2, the hammer comes back and hits again. I sleep without prosthetic feet on, so there’s nothing there. There’s nothing to massage. The painful part of my foot is missing. I sleep through this but I don’t know how long.

Eventually, I wake and then I get to experience this in real life. The only way to alleviate this is through additional medication. I take another opioid as well as ibuprofen. I found that taking them together works best. My doctor makes sure I have a prescription for what she calls breakthrough pain. Amputee phantom pain is definitely a breakthrough pain. As I wait for the pills to work, which takes about 2 hours, I pray. That’s all I can do. The Lord knows my situation so I talk to Him about it and ask for Him to remove the pain. He always does.

Prosthetic legs, how phantom pain can ruin your dayI don’t know how long it usually takes to feel better because later on, I wake up and its all over. My phantom pain doesn’t happen very often and it doesn’t always happen at night. I’ve been unable to determine what causes the pain. I know that I get achy in my arms when it rains a lot, but I haven’t been able to determine the cause of the foot pain. Unfortunately, though, I’ve been awakened the last two nights with amputee phantom pain. It has been raining. I’ve decided to start keeping track in my journal. I’ve started watching the barometer pressure but so far, it doesn’t seem like the culprit. It would be great to figure out the cause of the pain but all the googling I do does not answer that particular question.

Solutions for amputee phantom pain

Googling solutions to amputee phantom pain doesn’t help either. Recommendations include things like acupuncture or mirror therapy. I don’t consider acupuncture mostly because of the infrequent nature of the pain and at the moment its happening, I’m not prepared to run off to a specialist. Although in my ignorance of that therapy, it probably works differently than that.

Mirror therapy is another suggestion. The way that works is to place a mirror between the legs and to rest the healthy leg next to a mirror and to imagine the painful leg is whole. This method will trick the brain into thinking there is no pain in the amputated limb. However with both legs amputated, I don’t see how that could work.

Massage, removing the prosthetic and elevating the leg are all other suggestions for pain relief. However, I haven’t found anything to be very effective.

Prayer is the only thing that works

As you can see, the challenge for pain with amputation is very real and dealing with amputation can sometimes be a struggle. My best and only solution at this point is my faith in the Lord and prayer. I know that through God, I can get through anything. I know that waiting on the Lord puts my healing on Him. It’s a test of my trust that He is able to take care of my pain because ultimately He is the only one who can. All the medicine in the world won’t work if it’s not in His will. Would you pray for me as well? I believe so very much in the power of prayer. I am alive today because of the prayers of my family, church family, and good friends around the world.

If you are interested in more information about my life as a quad amputee woman, you will probably enjoy 10 things I can’t live without as well as Amputee life: 5 things I do differently than you do.  Obviously, I rely on the Lord for strength, guidance and comfort.

If you have any questions about phantom pain or life as a quad amputee woman, feel free to comment below or look me up at my One Exceptional Life Facebook page.

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  1. Hi Wendy
    It’s very late or early depending on how you look at things. I have been up for 2 hours with my phantom pain…it’s crazy how our descriptions are almost identical. I cried when I read your article. I hope you don’t take this wrong but it was so validating! Wow that sounds awful…of course it sucks to read someone else feels pain the same as i do but to read your descriptions to my Mom and my boyfriend are amazingly validating. I feel like people must think I’m crazy when I describe it to them and sadly my sister has come to a conclusion that I make it all up which ends up causing another kind of pain entirely…heartbreak! I love her but her judgement of the way I manage things has caused some big problems in our family. I do what is necessary to have to best quality of life possible but I miss having my sister, I’m younger and much more emotional than her so it’s hard to let it go. Anyway thank you for helping get through my phantom pain tonight. Thank you for the validation. Praying that you slept well tonight. I am Kerri. God Bless!

    1. Hey Kerri, I am so sorry for what you’re going through. Phantom pain is the WORST!!! Then if you add emotional hurt on top of it, I can’t imagine. I recently found this idea that might help the pain…pickle juice! Sounds weird, I know. But I’ve been drinking an ounce or 2 a day (couple of swallows) and it seems to make my phantom pain episodes occur less frequently. It has something to do with muscle contractions. Apparently it’s good for leg cramps too. I encourage you to try it. Hang in there. I’m thankful my post was there when you needed it.

  2. Wendy I am truly amazed by your strong will and courage to live through such a difficult circumstance. I do hope that the future holds many more options, medicines, and technologies that will improve your comfort and soothe your pain more effectively. You are one of the most positive and inspiration people I have had the pleasure of meeting on my blogging journey and I look forward to seeing you succeed.

    1. Thank you so much, Kyla. You’re so kind. I’m very thankful for all of the helps and conveniences that I’ve received. It’s been great having the tools that I need to live a normal life, as normal as I can have.

  3. Wendy, Yes – I’ll be happy to pray for you. You are amazing and strong, I am in awe of you. And I can only imagine the down times too. I’ll pray for you, and stand in faith to believe for God’s healing coming your way. Sometimes it seems that God is late. Believe me, I know. But actually, He is always on time. You will be healed. Hugs to you.

    1. I appreciate your prayers. Yes, I know that God heals and answers prayers perfectly, in His own time. I’m thankful for that.

  4. Yes the Lord knows are Pain, asking in Prays for healing to you and All Amputees with this Pain and myself,Injoyed reading your post ??????

    1. Thank you so much. I don’t know how I could get through my days without talking to the Lord. You stay strong as well. Thanks for reading!

    1. Thank you Karen,
      We cope with the lot we are given, right? I just try to keep a smile on my face and push on through. I pray a lot too.

    1. Hi Elizabeth,
      Thanks for the love and good thoughts. I wish I could say that the phantom pain will go away, but in my heart, I think probably not. It’s been 7 years. In fact, it came back last night. The other reason I say that is because the regular nerve pain is still there that requires the patch. I usually can feel when it’s time to change it, unfortunately! ?. Good question. Have a great weekend! xo

    1. Hi Rosemarie,
      Yes, it absolutely does. Prayer works for all things in our lives. Thank you for checking out my post.

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