Phantom Pain

Posted by corinnemcg @corinnemcg, Oct 28, 2019

Hi fellow pain sufferers, fourteen years ago when I was 62 I "caught" necrotizing fasciitis" better known as the 'flesh eating disease'. I am happy to be alive but I lost an arm and have had pain in that missing arm all these years. It is controlled by opioids. I sure wish I didn't have to take them but have tried other pain techniques but so far haven't found any relief. I don't feel like an abuser because my pain meds are prescribed but I am addicted in the sense that I wouldn't be able to live without them. On a couple of occasions my pain has gotten out of control and then I have shooting pains like electricity running through my arm at a high voltage. It sometimes has taken 2 days to get it back under control so I try very hard not to have that happen. I would like to hear what other phantom pain sufferers have experienced. I know every amputee doesn't have this happen to them. I asked my pain doctor and he said no one knows why that is.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Hello @corinnemcg, welcome to Connect. I'd like to invite back @makmes and to this discussion to share their experience with amputation and feelings like the limb is still there and the pain that it can bring. I'd also like to invite @lillee back as they talked about their experience with phantom pains with their double amputation.

Here is what Mayo Clinic has to say about phantom pain, https://www.mayoclinic.org/diseases-conditions/phantom-pain/diagnosis-treatment/drc-20376278. Very similar to your experience.

@corinnemcg, have you tried any other treatments than pain medications? Mayo Clinic (in the link above) talks about other treatments that have worked for others such as: Mirror box, acupuncture, Repetitive transcranial magnetic stimulation (rTMS), and spinal cord stimulation.

REPLY

I understand what you are saying. I am an above-knee amputee. I lost my leg in Vietnam over 50 years ago and have had phantom pain every day since then except for days when I use pain medicine which is getting very hard to get. Of course at my age now I have many other pain problems some of them related to the amputation. In the army hospital, I was on an amputee ward which helped me to adjust. Some guys had pain like me and some did not. At that time no one knew much about phantom pain and even now I don't think they know very much more. Good luck. 19lin

REPLY
@19lin

I understand what you are saying. I am an above-knee amputee. I lost my leg in Vietnam over 50 years ago and have had phantom pain every day since then except for days when I use pain medicine which is getting very hard to get. Of course at my age now I have many other pain problems some of them related to the amputation. In the army hospital, I was on an amputee ward which helped me to adjust. Some guys had pain like me and some did not. At that time no one knew much about phantom pain and even now I don't think they know very much more. Good luck. 19lin

Jump to this post

Thank you for responding. Every day I think of the young soldiers who have lost limbs and will suffer the rest os their lives. I wss 62 when I had nf. I see a pain specialist regularly and am able to get drugs that certainly help. I wish I didn't them. I know they make me tired and dumb. I thought vets had access to good health care so I don't understand why you can't get meds to help you.

REPLY

My phantom pain journey began in 1972 when I experienced a transfemorral amputation to "treat" bone cancer. As a scientist, I read papers and experiment on myself.
Early on, I stepped down from IV morphine to codeine (in hospital) which I continued to use to address phantom pain, but my family doc decided after a few months that I was in jeopardy of becoming dependent on it and tapered me off of codeine onto valium. I think he astutely realized that I was treating my mortal dread as much as pain with the codeine.
Over the years, the frequency of PhP gradually decreased, but it can resurface at any time. I think distraction plays a role in training the brain to filter the signals out. I was busy with college, then career and family, so I had plenty of distraction. I had severe bouts of PhP strike suddenly and relentlessly a few weeks after the birth of each of my children. No-one had any idea why of course, but I attributed it to pressure aggravation of nerves upstream of the severed nerves. It subsided each time.
After decades, it has become rarer and rarer for PhP to begin when I am awake and focussed (unless it is brought to mind for some other reason). Eventually even that has become a rare occurrence, and almost always awakening me from a sound sleep, or hitting me just as I am relaxed and dozing off. I figure my brain gets lazy and neglects the "disregard" filter.
My experience with opioids has been that they do not help my phantom pain at all, unless they are so strong that they render me almost senseless. Even then, if my attention turns to the PhP, its intensity seems barely diminished. I do find them very effective, for me, for acute post-surgical pain.
What does help me is ibuprofen. I have found that a prescription strength dose of OTC ibuprofen takes the edge off, and I can then distract myself and sometimes even fall back asleep after an hour or so. The most important thing is to hit it early, before it has a chance to really take over. I gauge the dose based on my experience of the intensity with which PhP initially hits. If necessary, I will take up to 800 mg/ 6 hours (with my doc's okay). Sometimes I only need 400 mg. I only need a second dose maybe a third of the time, and almost never a third dose. Sensory distraction also sometimes helps: a very hot bath, a massage, a barrage of swear words. (My husband is a very understanding guy.) There are just some terrible nights, but at this point, usually only one every month or three, on average.
I haven't found any relief in CBD oil, or TENS, but I am experimenting with a roll-on topical called PK-5, which I think may have helped some. "More research is needed".
It does help me to remember that, even if it's making me scream, it is "just pain", not injury.
I'm interested in the experience of others.

REPLY
@sailormom460

My phantom pain journey began in 1972 when I experienced a transfemorral amputation to "treat" bone cancer. As a scientist, I read papers and experiment on myself.
Early on, I stepped down from IV morphine to codeine (in hospital) which I continued to use to address phantom pain, but my family doc decided after a few months that I was in jeopardy of becoming dependent on it and tapered me off of codeine onto valium. I think he astutely realized that I was treating my mortal dread as much as pain with the codeine.
Over the years, the frequency of PhP gradually decreased, but it can resurface at any time. I think distraction plays a role in training the brain to filter the signals out. I was busy with college, then career and family, so I had plenty of distraction. I had severe bouts of PhP strike suddenly and relentlessly a few weeks after the birth of each of my children. No-one had any idea why of course, but I attributed it to pressure aggravation of nerves upstream of the severed nerves. It subsided each time.
After decades, it has become rarer and rarer for PhP to begin when I am awake and focussed (unless it is brought to mind for some other reason). Eventually even that has become a rare occurrence, and almost always awakening me from a sound sleep, or hitting me just as I am relaxed and dozing off. I figure my brain gets lazy and neglects the "disregard" filter.
My experience with opioids has been that they do not help my phantom pain at all, unless they are so strong that they render me almost senseless. Even then, if my attention turns to the PhP, its intensity seems barely diminished. I do find them very effective, for me, for acute post-surgical pain.
What does help me is ibuprofen. I have found that a prescription strength dose of OTC ibuprofen takes the edge off, and I can then distract myself and sometimes even fall back asleep after an hour or so. The most important thing is to hit it early, before it has a chance to really take over. I gauge the dose based on my experience of the intensity with which PhP initially hits. If necessary, I will take up to 800 mg/ 6 hours (with my doc's okay). Sometimes I only need 400 mg. I only need a second dose maybe a third of the time, and almost never a third dose. Sensory distraction also sometimes helps: a very hot bath, a massage, a barrage of swear words. (My husband is a very understanding guy.) There are just some terrible nights, but at this point, usually only one every month or three, on average.
I haven't found any relief in CBD oil, or TENS, but I am experimenting with a roll-on topical called PK-5, which I think may have helped some. "More research is needed".
It does help me to remember that, even if it's making me scream, it is "just pain", not injury.
I'm interested in the experience of others.

Jump to this post

Hello @sailormom460, welcome to Connect. Thanks so much for sharing your journey, and what a journey it's been for you since 1972 having amputation from cancer. I'm sorry for all you've gone through.

Your words are wise and you definitely seem like someone who "gets it". Perhaps its the scientist in you! Given your perspective on your brains power to reshape pain and your keen insight based on experience and observation of cause and effect, I feel that you would very much relate to and appreciate the video about Central Sensitization Syndrome by Mayo Clinic's Dr. Sletten from the Pain Rehabilitation Center. Are you familiar with CSS?

REPLY
@rwinney

Hello @sailormom460, welcome to Connect. Thanks so much for sharing your journey, and what a journey it's been for you since 1972 having amputation from cancer. I'm sorry for all you've gone through.

Your words are wise and you definitely seem like someone who "gets it". Perhaps its the scientist in you! Given your perspective on your brains power to reshape pain and your keen insight based on experience and observation of cause and effect, I feel that you would very much relate to and appreciate the video about Central Sensitization Syndrome by Mayo Clinic's Dr. Sletten from the Pain Rehabilitation Center. Are you familiar with CSS?

Jump to this post

I'm unfamiliar with it, but I've just queued it up to listen to while I do shoulder PT. Thanks!

REPLY
@sailormom460

I'm unfamiliar with it, but I've just queued it up to listen to while I do shoulder PT. Thanks!

Jump to this post

Thats awesome, you're welcome!

Take a peek at this video from Mayo Clinic's Dr. Sletten presenting on CSS:

I think it will resonate with you. Do you mind getting back to me with your thoughts?

REPLY
@rwinney

Thats awesome, you're welcome!

Take a peek at this video from Mayo Clinic's Dr. Sletten presenting on CSS:

I think it will resonate with you. Do you mind getting back to me with your thoughts?

Jump to this post

Hello @sailormom460
Just checking in to see how you liked the video on CSS, and my goodness, noticing that I attached the video after you said you queued it up to listen to. I'm sorry about that, a total oversight indeed.

I hope you're having a good day!

REPLY
Please sign in or register to post a reply.