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I am a below knee amputee. More importantly, I am also Mommy to two boys, a very active 10 year old (Robby) and an mischievous toddler (Timmy). I have learned that being a parent with a disability can create some unusual and sometimes humorous situations. This blogger is available for hire! Let's talk and learn how a blog can expand your business.

Friday, April 09, 2010

My "Cure" to Relieve Phantom Pain

A few new amputee friends have recently contacted me seeking possible remedies for phantom pain. There is a misconception that phantom pain refers to actually feeling a limb that is no longer there. While I have experienced these kinds of phantom sensations, they have never been painful. These sensations have been limited to feeling the bottom of my missing foot itch, or a toe twisting.

I have experienced a different kind of phantom pain, especially initially after my amputation, in the form of stinging. My leg often felt like it was being stung by thousands of wasps. There was little that I could do to stop the stinging, and I became a prisoner of the pain. I felt helpless, and I was miserable.

I tried all of the prescribed approaches, including neurontin and pain medications. The neurontin dulled the stinging, but it left me sluggish and depressed. At the time I didn't know that use of neurontin has a strong correlation to depression. This would have been good information to know!

I tried compression with moderate success. Massaging the limb helped, but, unfortunately, the pain persisted when the massaging stopped. I was becoming desperate to stop the stinging and I began to regret my decision to amputate.

I took to the internet and spoke with other amputees. I decided to become aggressive in my treatment. I am hesitant to admit the extent that I have gone to in order to alleviate this relentless pain, but my approach was 100% successful.

I discovered numerous articles touting the success of medicinal marijuana. Simply put, Cannabis dulls nerve endings. I researched the effects of this drug and learned this herb is less toxic than the cocktail of percocet, methodone and neurontin which I was prescribed. I called a trusted friend who immediately helped.

I was terrified when I had the water pipe in front of me, packed with what I knew to be an illegal drug. I also knew that the stinging pain was taking over my life, and the traditional medical approaches were not yielding relief. I took a hit.

Literally, within seconds, I could feel the nerve endings, which had been so angry a moment ago, begin to quiet. One minute after a little puff and my phantom stinging pain was completely gone. For the first time since my amputation, I was without pain!

There is a misconception that one has to become "high" in order for marijuana to work. This, I learned, is not true. I didn't lose contact with reality or become silly. I simply became Peggy without pain. I stopped the pain medications and the neurontin. When the phantom pain become severe, I would take a hit. For me, it was the miracle I had been seeking.

Thankfully phantom pain subsides with time. The nerve endings slowly become less angry, and the electrical impulses which cause the stinging cease. I am nearly seven years post amputation, and phantom pain is no longer an issue in my life.

I find it hard to understand how addictive pain medications are more socially acceptable. I suppose I am still defensive about my use of this drug. I don't want to be perceived as a "pot head" although, I assure you, my friends would laugh at this reference!

While I am not urging any of my readers to follow suit, I did want to let you know what worked for me. I don't have marijuana in the house because I no longer have pain that needs treatment. I am thankful that I was able to call a trusted friend who was willing to help me treat my pain. I resent that the solution to my eliminating the phantom pain completely is considered a criminal act.

13 comments:

  1. I bet that one could get a script for "medical pot". Thankfully accupuncture has done miracles for my phantom pain, which has so often felt like the car crushing me all over again! In any event, I am glad you had found something that helped you. - Sarah G.

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  2. I'm really glad that the acupuncture has helped you! It depends what state you live in concerning the medicinal marijuana. Some states allow the use, and others do not. It is becoming a more recognized treatment though...

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  3. Hi Peggy,
    I am really surprised to hear that Marijuana helped you. I am currently on a combination of Neurontin and Percocet.If I may ask, how long did you use marijuana before you stopped it completely? Also have you tried the mirror therapy for the pain?
    Also with regards to being disappointed about not hearing from publishers, I ask you to be patient and keep the articles coming. Rest assured, you have an audience who are greatly helped by your writings. You will find someone to publish your wonderful writing.
    Regards
    Recent amputee doc.

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  4. Initially after my amputation, and for the first I would say three months, I smoked several times a day. Not enough to become stoned, but enough to completely dull the pain so that I would not be totally miserable as the nerves were resetting. After the initial trauma pain subsided, my use was able to be decreased. From I'd say month three to month five, I smoked only once a night, in order to relieve the still painful "cricket leg" and to allow me to sleep. By month six the pain was gone and I didn't need to smoke anymore.

    I haven't tried the mirror therapy myself, but I have heard mixed reactions. Those who had a "traumatic" amputation seem to have more success. I know that they are doing a study through NIH concerning the therapy...
    Hope that this helps. How long have you been an amputee? Thanks for reading my blog!

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  5. Hey Peggy,
    Thanks for the prompt reply. I had the amputation 6 months ago. Traumatic. Been on the prosthesis since 4 months. Been at work since month. I take one percocet a day. I kind of want to avoid that too. However, the pain gets very annoying at the night and I cannot sleep. I also have a developed a neuroma, so that kind of makes things worse. I have been considering alternatives. However, I have never smoked in my life. So it would be nice to have a chewable alternative though...:-)

    You must read a book called "Phantoms in the Brain" which deals with a MD s perspective on Phantom limb pain. Very interesting read too.
    I am glad to have stumbled on this blog to understand what others have been through...it helps.
    Regards
    Uni-limb-abled doc.

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  6. I'm glad that you found the blog as well! Sometimes being an amputee can feel very isolating...

    It's funny, I never smoked before my amputation. Not in high school, college etc.. I was very studious and wasn't into the "party" scene. It wasn't until after my amputation that I became desperate enough to take my first hit.

    It definitely helps at night. Literally one puff and the nerves in the limb feel like they fall asleep. I know that you can eat it as well, but I don't know how effective or how much you would need. Nights are the worst for just about everybody!
    :)
    Peggy

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  7. Hi Peggy , I have been an amputee for three years now ,I am cut as high as you can be cut to my hip , I have the same stinging pain , really bad and I don`t know what to do , I tried lyerica , perkacets ,morphine pills and Marijuana , nothing seems to work , a doctor even enjected cordzone and no luck , this pain is sucking the life right out of me , I read about the mirror theropy I guess I`ll try that now .
    Tony

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  8. Hello.
    My boyfriend is a double amputee. He has been on all the drugs and none of them really help. The only thing that does is the Marijuana. He gets a immediate relief when he smokes.
    The other way to use the pot is that you can eat it. You can make a butter of it and eat it on something, that works or other people I know with chronic pain.
    Thanks for your info. I was struggling with him smoking it and I now know that it is the only thing that makes a difference for him.

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  9. Doesanyone know if there is an herb or herbs that can help with phantom pain

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  10. Hi Peggy,
    Phantom pain can return ... with a vengeance. I have Left Below the Knee Amputation over 4 years ago after being hit by a car. For about 3 years I had minor brief episodes of phantom pain but recently I have been having severe enduring phantom pain akin to what you describe as stinging. I hope your does not return but did not want you to be discouraged if it does.

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  11. Hi Peggy

    I am a bi lateral above knee amputee who has been struggling with nerve pain for a little over a year now. I have been perscribed gabapentin, lyrica, and oxycontin for this pain with minnimal sucess. The gabapentin at the max dose of 3200mg a day did nothing for what I can only describe as having my stumps feeling like they are being electrocuted coupled with being stabbed with thousands of icicles. Lyrica had some adverse side effects that made it unsafe for me to be around anything living (extreme and uncontrollable aggression), the oxycontin is the only thing that has worked but im growing tolerant to it and needing to increase the dose as much as double to acheive the same relief not to mention the effects of prolonged use. My pain is unrelenting and constant and only lets up when the oxy is in full swing. I have been looking into alternate treatment and stumbled across your blog and was hoping you could provide some insight. I live in California so the legality of medical marijuana isnt a concern but I am worried about the social aspect of it. Also, I have no interest in being high, I have toddler daughters who still need thier daddy to provide for them.

    What method did you use to administer it?

    If you used more than one method which gave you the best results?

    What was the associated cost?

    How much was required before acheiving relief?

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    1. HI, my nephew feels the same way , he lost hes leg over the knee a year ago, he had a 3 year tolder and the same situation he cant be high all the time and also spend money on that. He is not working and the insurance is a big problem every time he needs prescription refill. I hope find a way to help him and all the amputees . Is really hard seeing a family member in pain all the time and see that hes life was reduced in a 20% of activity and social activity is 0 .. :-( hope all of you can find a way to recover and deal with this pain.
      with all my respect
      Cristina S.

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  12. I have been a above the knee amputee for 11 years... Phantom pain is back and worse than ever... I know marijuana helps rid the pain considerably if not completely... Obviously the one who make the decision to legalize marijuana in Kentucky are living without chronic pain...

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