Phantom Pain.

[ged]

3months ago I had a bka of my right leg after cancer developed in a wound that hadn’t healed properly after a motorcycle accident 40 years ago. The stump has healed very well, but I am suffering from p.p. The pain is like medium pressure is constant applied over the whole of the lower leg, with stabbing pain in various parts
My questions are, will this reduce in time. Are there any “ tricks “ to help.
am taking gabapentin but with no real effect
Looking forward to hearing of anything you feel will help.

[spyder]

I heard differnt stories about Phantom Pain !

My "Physiotherapeutin" told me use my Hand to to reset the brain, i think te plan is the Signal of your Hand gives your brain the updated informations there is no leg !?!?!? Also i heard the will get less after some time ... and also i heard that they could get worse !

I know it´s hard but i havn´t heard about someone has died cuse of Phantom pain !!!

Greets Roland

[ged]

Thanks for the reply. I am trying to get as much information as possible, Tomorrow I am going for the first mould of my prosthetic so hopefully I will be on my way to being mobile in a month or so. Don’t have much idea about the process of what will be no doubt be painful. The normal way they do things have been disrupted because of Covid

Ged

[spyder]

Yes i understand !

My Feeling is, inside my socket i have less Phantom pain than without socket and liner. But i´m aka got an other painfull spot where the socket takes my weight, it´s getting better but the first times could hurt a bit but you will survive.

Good luck in getting a perfect Fitting socket !

[snowyh]

Having become an amputee almost 50 years ago, I'm having to really think back, but what I remember is that I experienced almost constant PP immediately after surgery (stabbing & electrical shocks) that gradually lessened over the course of several years (3?) until it plateaued where it is today. I now get 3 to 4 PP episodes per year that vary from mild to severe in intensity and can last up to 3 days.

I determined a long time ago that my PP episodes were triggered by stress (final exams, working lots of overtime, etc.), and found moderate success using the prescribed drug Lorazepam for decades. However, when CBD became legal in my state a few years ago I decided to give it a try, and found it actually works BETTER than the prescription, so now I only use CBD. Additional benefits to using CBD: 1) I no longer have to ask my Dr. for a Lorazepam refill--they look at me like I'm a drug addict (it's a benzodiazepine). 2) I don't have to reserve CBD use for only my worst PP episodes, as I did with Lorazepam (see benefit #1), and I have found that controlling PP early, while it's still mild, can avoid an escalation to more severe symptoms.

Helen

[stonecutter]

Excellent snowyh.

I have absolutely no reservations about people using CBD or THC. Cannabis use in Canada will have been legal for two years this month - it was available by prescription prior to that. The expected doom and gloom that came with it - scenes of massive abuse - never came to light. When it was being legalized, dozens upon dozens of cannabis stores opened in our area - kind of like liquor stores. Since then, there have been some of these stores closing their doors, as the demand isn't where it was expected to be. The market is now right-sizing itself.

I have seen ex-military guys I hang out in the Shriners use CBD/THC oils to help them with the souvenirs of their military service - joint and back issues with an incredible result.

I've never taken CBD/THC or used marijuana recreationally before. I do, however, recognize that with the imbalance of our bodies caused by amputations will, at one time bring with it the need for something to help me with it. And my eyes are on a CBD and/or THC oil solution already.

[alexv]

Hi. I am 75yro diabetic w/ rt. leg amp in Aug. I have residual nerve pain in the stump and Phantom limb pain in my "foot".
I started using prosthesis in Jan but it hurts so much I'm reluctant to use it. I use Meloxicam; gabapentin; 10 mg THC gummies;
Lidocaine; Dextrothromorhan cough pills (for phantom pain). This works some but I think I might have to get used to it.

[vince]

I've been a double BK amputee for 20 yrs . I've used Gabapentin with no relief from phantom pains . I could never find a remedy until now . Well it seems promising if not a remedy . I had bought a tens unit for my phantom pains. I thought the electric stimuli would interrupt the brain sending messages to my lower limbs. Well yesterday I had very extreme phantom pains ...like a 9 pain . I put two of the tens patches on the leg that had the pain. I put them on the hamstring as close to the end of my residual limb. I found when i have either the heavy phantom feelings or pain when i grab the residual limb at the end with pressure it felt better . Well the tens worked . After hooking it up, I had relief . i had a small shooting pain for about a second then nothing . I left the tens on for about half an hr to make sure it wasn't just a flook. The phantom pains haven't come back yet . When they do i'll try again. I'm not saying this definitely works for everybody but it worked for me and worth trying it out .

[snowyh]

That's wonderful to hear, Vince! I never even considered using a tens device, nor have I heard of anyone using one for PP before, so thanks for sharing and I'm so glad it seems to help. I have a tens that I acquired for a different purpose, but I may try it on the "stump area" when I have a flare-up. Even though CBD has greatly reduced my PP I do still have the occasional bad day.

Helen

[stonecutter]

Hey folks. Update after re-reading this thread. In +/- March of 2021 I sought and got a medical marijuana license and tried CBD with little to no effect. I moved onto THC and saw a remarkable reduction in the severity of my phantom pains when they occur. As I've stated elsewhere, I'm used to having in tense phantom pains to the point that I would avoid driving if I was experiencing them.

I've taken to vaping THC. As a person who had never indulged before, I didn't know what to expect, but I can tell you that I've observed the following when vaping THC:

- I sleep like a baby!
- My mind shuts down and lets me sleep!
- When I have middle-of-the-night onset phantom pains, they are truly mild and I'm usually able to go back to sleep - this never happened in the past.

The medical supply in Canada turned out to be less reliable, often the product would arrive damaged or not working, and you wouldn't believe what I needed to do to prove that the products were substandard. So since Canada legalized personal use marijuana in 2018, I took the dosage I'd get with disposable vapes from the medical supply and went to the local dispensary in the city I live next to. The folks there were very helpful in matching it up, although being very careful to state that they are not certified to dispense anything from a medical point of view, but recreationally - no issues. So I found that buying a vape cartridge at these stores lasts me about 6 weeks, I use it nightly, and it costs about $40 CDN for those 6 weeks. So roughly $1/day.

If you have the opportunity - I recommend it to manage phantom pain.

[vince]

 Thank you snowy. Hey just an update on using my tens. I get phantom feelings also.  It  feels like when your foot falls asleep and you get those pins and needles kinda feeling. I also can feel my toes.  Sometimes it's so annoying that I can't concentrate on anything. There's no pain but it seems to last a long time. If i'm in bed it really sucks cause i can't sleep . Well i put the tens on and low and behold it went away and i fell asleep . Gosh I wish I had thought about this 20 yrs ago .  

[fommof]

Aug 21, 2022 9:27:49 GMT -7 vince said:

I've been a double BK amputee for 20 yrs . I've used Gabapentin with no relief from phantom pains . I could never find a remedy until now . Well it seems promising if not a remedy . I had bought a tens unit for my phantom pains. I thought the electric stimuli would interrupt the brain sending messages to my lower limbs. Well yesterday I had very extreme phantom pains ...like a 9 pain . I put two of the tens patches on the leg that had the pain. I put them on the hamstring as close to the end of my residual limb. I found when i have either the heavy phantom feelings or pain when i grab the residual limb at the end with pressure it felt better . Well the tens worked . After hooking it up, I had relief . i had a small shooting pain for about a second then nothing . I left the tens on for about half an hr to make sure it wasn't just a flook. The phantom pains haven't come back yet . When they do i'll try again. I'm not saying this definitely works for everybody but it worked for me and worth trying it out .

First of all thank you so much for the info, I developed a bad back (yeah, I know, like I didn't have to deal with much already) so I bought a TENS/EMS machine 3 months ago and it does wonders on my back. Next time I have ghost pain I'll give it a try.

As for the anticonvulsants, honestly I don't know wtf doctors are thinking. They told me to start taking anticonvulsants for the ghost pains although I am one of the lucky ones I don't have to deal with them for more than 4-5 times a year. Yes, a YEAR. And the doctors propose to start taking anticonvulsants every single day for my whole life? Doesn't make any sense and these drigs are not all that innocent either.

Same thing for my back, two doctors wanted to start me on anticonvulsants, just like that, as if I had a chronic situation...jeez...