Phantom Limb Pain from a Hoomans point of view!

Hi Tripawds community

I have a friend who is currently enjoying a sunny winter in Mexico, who graciously accepted my request to join the discussion about Phantom Limb Pain.

I am going to ask her to sign in as a member so that she can join the discussions, otherwise, I can be her middle woman if that is not possible for her to do so... ‘copy, paste... copy, paste...’! I can do that!

I thought it might be insightful to get some information from a Hoomans point of view on effects of Phantom Limb Pain from an amputee of many years. So I asked my friend, Leslie, if she wouldn’t mind giving us her thoughts and experiences.

This was my question to Leslie...
“Hi Leslie, hope you’re doing well?
I have a couple of questions for you... I would like to ask about your amputation and phantom limb pain, if you have any...

My comrades on Tripawds are not getting much info from their vets about phantom limb pain. The vets have only just started prescribing Gabapentin for the nerve issues, but they don’t know much about it. I know a lot about it cause I was on it for more than a year!
In a lot of cases animals are sent home with far too little for pain meds.

You have lived with your amputation for a number of years correct? Do you or did you suffer from Phantom limb pain, or shocks etc?
I am assuming the brain functions the same for humans as well as animals... if the brain registers a missing limb it will send a shock message right?
My dad had his leg removed, but passed away shortly after. He used to complain of his constant itchy foot! You’re the only person that I feel that I can ask frank questions to. I hope you don’t mind Leslie. The folks on Tripawds will appreciate any information that can help us understand an amputation from a Hoomans point of view, based on your experiences!”

This was Leslie’s very informative reply...
“Hola Petra, It is torrential rains today, so am getting caught up on messages. My apologies for taking so long but I hope the following helps. One caveat, this is from my personal experience and in no way represents a medical opinion...

I suffered a left leg amputation high above the knee (AK) many years ago (due to Leiomyosarcoma) and still suffer the effects of PP (Phantom Pain ). At the beginning, it was far more severe in frequency and intensity, but to this day, it can still start to `fire`under certain conditions which I have learned to identify and try to avoid. Indeed it is the brain misreading signals but the pain is very real. I describe it as a lightening bolt through my body and is indeed a shock! It can present on a one time basis, or when it gets away on you, it will fire constantly, and this is PP at its worst. Really it stems from hundreds of dangling nerve endings which no longer connect to a complete circuit of nerves which the brain reads as a nasty signal. I have learned that certain conditions will exacerbate it.

The concept of pressure on the distal end of the limb is something I found helped a great deal - in fact, when the pain is so severe you scream in Hell, I immediately get into my artificial limb and bear weight by walking in the prosthestis and this often lowers the frequency of the shocks almost immediately.
Failing a prosthestis, I have found that when it hits, I quickly get to massaging the end of the stump quite gently at first, then get in a bit deeper more like a massage. Then, I get off the leg, and stretch out flat on the bed and literally try to control the PP with my mind. It is a variable whimsical condition and you never know when it may strike.

For me, what seems to cause it is too much walking in the leg so I have learned to pace myself throughout the day - in it and then out of the leg. This seems to decrease the risk of the pain. Another thing that greatly aggravates it is sitting in an improper chair which of course makes me bend at the hip. This irritates the hip flexor and I am FAR better to lie rather than sit. It is indeed a fine line between creating the wrong conditions for PP to occur and to not.

With regards to temperature, I find it better to apply a cold pack to the distal end of stump for about 10 minutes at the most. The i’lI wrap it in a warm pack. Sometimes that will help.

I was put on meds which I quickly abandoned as they really didn`t do anything and are so invasive to other parts of the body. Interestingly enough, Petra, Gabepentin was used years ago to treat Diabetes! My father was on it. There are really no injections that will help either. When it now gets totally out of control, I take two muscle relaxants prescribed by my Doctor and this at least stops me from tensing up, anxiety rising, etc.

I have recently started to use good compression socks when I travel on airplanes and have fitted one out for my stump. No phantom pain during long trips on airplanes which is indeed a blessing. With this meagre information, I am now trying to apply it in my mind as to how and what things might help a Tripawd.

Do any of them get an articfiial limb so to speak or is the residual limb always hanging free which to me causes the onset of more frequent shocks. It would be worth massaging the stump on a regular basis,which soothes, and subsequently calms the brain down!

So far as drugs, perhaps this is the time to try medicinal marijuana oil which should not contain any THC. This has helped me in so far as it puts me to sleep when I feel some PP coming on. The pressure trick mentioned above should also help.
If you could give me some feed back from these notes, and tell me specifically what the dear animals present as the pain and when it seems to happen, perhaps then I could give you some better thoughts. Hope this is of some help Petra. Kindest regards to all and remember it should abate somewhat as time goes on.”

-———

Many thanks to Leslie for a very informative and caring reply!
I will “copy and paste’ any replies from the forum to Leslie and hope that she will log in and give further insight to her experience. I will paste back her replies if she can’t.
I hope that this discussion will in some way help us understand our fur kids and help them live happier & hoppier lives!

All the best from Petra and her Country Clan ❤️❤️❤️