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.

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.

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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

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@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

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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.

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