POLL: Do You Experience Phantom Pain/Sensations?

[snowyh]

I just read that 70% of amputees suffer from phantom pain. That seemed a bit high to me, so I was just wondering.

[stonecutter]

It's such a part of life - I'm surprised to hear it's only 70%. I have it 24-48 hrs if my chiropractor adjusts my lumbar area and when the barometric pressure drops suddenly - when a front comes or storm rolls in.

[cherylm]

Once again, I'm feeling so very lucky...I almost never feel anything in the way of phantoms...while I have very occasional itching, it's definitely on my actual stump and I can do something about it. I did have a general awareness of a "phantom big toe" for several years, but even that has disappeared in the last couple of years. When I hear what so many of us go through, I feel truly blessed.............

[caredneckgirl]

I'm a 40 yr old AE arm amputee. My arm was physically cut off last Christmas but unusable for the past 9 years. I still try to put things in that hand, reach out for things, etc. You would think my brain or body would have been able to retrain itself after 30 years having the arm and 10 years not. I can still feel to the finger tips everyday. It's crazy!

[caredneckgirl]

Cherylm -my friends laugh cuz with I get a phantom sensation that needs itching I sensation itch it! I figure it is the brain messing with me so I'm going to mess back with it. I itch where the arm would be. It that doesn't work I act like I am laying my arm across my lap and without looking itch leg tricking my brain that I itched my arm. I figure if a PT and OT is going to train tricking my mind with a mirror that same concept can be used in many ways.

[cherylm]

That actually makes some degree of sense! I know one woman who, if her missing right leg itches, she'll scratch her HUSBAND'S right leg in the same spot. She's been able to convince her brain that she's scratching "a right leg" and it often does the job.

Sometimes having a vivid imagination can help in this odd little amputee world.........

[dmbihm]

I don’t know if what I am feeling is phantom pain or not. It’s more like pins and needles, burning and sometimes shocks. I have a hip disarticulation. Diagnosed with osteogenic sarcoma 44 years ago in left leg. I have been wearing a prosthesis for 44 years and when I take it off at night I feel the pins and needles, etc. I take gabapentin ( 1200 mg ) a day and also Xanax. I am not sure if the gabapentin really helps. The Xanax helps take the sensation of pins and needles away most of the time.
I fell on my left side about 3 weeks ago and have been on crutches and no prosthesis since. Been in my house for 3 weeks and it is starting to make me depressed. My left side is getting better but cant quite bare all my weight on it to wear my prosthesis. I really miss not being able to wear it. It gives me a sense of independence where as with crutches I don’t have that. I needed to “vent” to someone so hope someone reads this and can give me words of encouragement. Thanks.

[snowyh]

Hey there, dmbihm. Fellow osteogenic sarcoma survivor here (upper right humerus, interscapulothoracic amputation of right arm, 1972, non-prosthesis wearer). I also had a fall in the last year (from a step ladder onto my left shoulder), incapacitating me severely for 4 months. I have now returned to living independently, but still suffer from pain and limited range of motion. And yes, some depression. I understand the frustration of suddenly becoming disabled, after decades of independence.

One coping technique I have used during this experience is simply projecting forward in time to when I'll be "all better," realizing that my current state is only temporary. I'm also a firm believer that everything presented to us in our lives is to either settle past scores (a/k/a karma) or to teach us something. So I focus on either figuring out what I'm supposed to learn from this experience, or taking comfort in the fact that I have paid a past debt that will no longer be hanging over me. I still have better days and worse days, however, mostly having to do with how my physical therapy is progressing. I would suggest that you work to decrease your social isolation. Reach out to friends and family... invite them over for a beer, or just keep in touch my phone. Join zoom meetings for any organizations you belong to (your job, church, etc). And before you know it, you'll be looking at all this in the rear view mirror. Best of luck to you, and let us know how you're doing!

PS--I can tell we're of the same generation because you use the term "osteogenic sarcoma." That's what they called it when I was diagnosed, too, but they now call it "osteosarcoma."

[stonecutter]

Hello, dmbihm. Thanks for joining our little forum and chiming in. Your experiences and input on some of these threads would certainly be beneficial.

I am a below-the-knee guy for 28 years now. Your description of sensation and phantom pain are just about bang-on what my experiences are. My pins and needles is something that is fairly mild for me, though in that I've learned to ignore it. I feel it 100% of the time. I describe it as a combination of pins-and-needles and vibration. The issues I've been fighting for as long as I've been an amputee is the phantom pains. When they set in, good lord - they capture my full attention, it feels like an electric shock, and they can persist from as little as a couple hours to a few days. When they are hitting me, I get very little sleep.

I have found that if I can figure out the precise location to place the pads, a TENS machine will lessen their impact, and even then only if I have it on the right setting. The wrong setting can make it much worse!

In the last 15 months or so, I have been vaping THC before bed. I'm not 100% sure, but it does seem that the phantom pains come less frequently than they used to prior. And... the THC strain I use really gets me to sleep!

Finally, I'm sorry to hear of your recent fall. Falls are a real issue for amputees. It's been a few years, but I've fallen out of the shower and onto the bathroom floor, naked, slippery and shampoo everywhere (my wife commented that it was quite the show no one would ever ask to see)! Funny thing is, that at that point, I was an amputee for several years already and I still stuck out my stump like there was a foot still there to arrest my fall, landed right on the end of my stump with all of my weight. Not going to lie - I full on sobbed like I was 5 years old. It hurt so much! (I've since started using a shower chair again, so no incidents since).

I hope you feel better soon. And - if you just want to talk to a total stranger about things - I'm in Canada, but I can arrange for an MS Teams meeting to chat about anything you want. That goes for anyone else out there who would like to have a virtual chat! May actually be pretty neat! Thoughts?

[rg8]

I cannot enter that survey, since I HAD phantom limb pain, but I no longer suffer from it. I recently had to have a revision of the residual limb, and my surgeon performed TMR. I have another post somewhere else that describes the technique and some of the medical centers that are doing the procedure