I have suffered Phantom Pain since my LBKA over four years ago. My GP spotted shadows (calcification) in the arteries on an X-ray he arranged for the loft leg I had fractured badly some years before as I was complaining of frequent pain in all the leg joints (the X-ray showed arthritis in the hip and ankle). He referred me to a vascular surgeon and although the X-ray was taken in autumn 2019 I did not get an appointment until the first week of April which never happened because of the lockdown. A few days before Easter the area where I was treated for an ingrowing toenail (outer edge of big toe) ulcerated. I had a scan about ten days after Easter which showed severe arterial disease. After that nothing bar increased doses of anti-biotics' and painkillers (up to eight Tramadol a day) as first the toe, and then the side of the foot and heel became necrotic. The pain between the live and dead tissue was off the scale at around 15/10!!! Althopugh I saw a podiatrist every week for dressing the vascular team remained out of sight barf the odd telephone appointment. After four months and weekly pleas from the podiatrist they decided to admit me. By this time I was quite unwell. An attempted angioplasty just succeeded in blocking the arteries and as I developed sepsis they decided to amputate!
I have suffered Phantom Pain ever since. It did start to ease very slightly after two years but intensified after revision surgery (delayed for nearly eighteen months because of Covid!). One consultant thinks I suffer badly from Phantom Pain because of the ling wait in increasing pain from Easter till I was admitted. I suffer bad or severe Phantom Pain four or five times a week usually just after going to bed or around 2:00 - 3:00 am. Sometimes 2 x Paracetamol helps but often I need to take Oxycodone to ease the pain. I gave up the prescribed Gabapentin months ago as it was totally ineffective. The practice pharmacist asked what withdrawal symptoms I suffered as you are meant to wean of it and when I said "Basically none" said "It can't have been doin anything for you"!
Occasionally I have a really bad day with Phantom Pain and today I am suffering the worse for about 21 months. The pain kicked in about 5:00 am (feels like being stabbed on the outside of the foot) every five to ten minutes, and despite taking both Paracetamol and Oxycodone only eased between mid-day and 3:00 pm. I am now very tired, miserable and grumpy with minimal appetite. I have only met one person who suffers as much as I do. I find it staggering that a supposedly highly intelligent brain (IQ 140 last time measured) can see there is no leg , let alone foot , below the knee and yet tells me it is in pain!
How do others with bad/severe Phantom Pain handle it?
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MichaelJH
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I don't suffer from phantom pain but still have occasional bouts of severe neurological pain from botched C spine surgery 25 years ago. Immediately after surgery I was placed on increasingly higher doses of Oxy contin, basically oxycodone which were effective at high doses which quickly produced tolerance. At the point I started weaning myself off it was 80mg os oxycodone every 6 hrs. I tried all the usual suspects for neurological pain and found that pregabalin wasthe only one that worked. It acts relatively quickly especially if you start with 150mg every 6hrs for a few doses and then decrease it as needed . Sorry for the rambling. Best of luck etheral..
Pregabalin is out of bounds for mr as they do not like prescribing it to people either over 60, lomg term diabetes or reduced kidney function (my eGGFR is 70%), so I tick all boxes. My use of Oxycodone averages about one per day over a month - sometimes none, sometimes three.
I am so sorry to hear that you have ended up with phantom pain. I haven't experienced it myself but I first became aware of it when I was doing my undergraduate degree in neuroscience 40 years ago.
Have you been referred to the pain management team? They should be able to find someone experienced in this even if they don't have anyone local.
And yes, even highly intelligent brains get it wrong, which is why I was so fascinated by neuroscience. I don't know if you have checked out some of the up to date papers on phantom limb pain? Here is a review paper:
I am now in computing rather than neuroscience and although it isn't in my area, I have been to seminars about virtual reality being used to modulate pain. It seems like it may be a good way of dealing with PLP.
Have you thought of reaching out to researchers if you can't find any support locally? I find generally researchers are happy to talk to people if you contact them. Here is Rui Loureiro from UCL who has done a lot of work in this area. He talks about PLP at the end of the video.
People complain that doctors say their pain is all in their mind. That is only half true. All pain is in the brain, it isn't in the body. Signals are sent to the brain and the brain has to decide what they are. Is there a threat, do I need to run away, have I cut myself, and so on. Sometimes those signals get messed up in the brain and that is where neuroscience can make a difference, both in understanding what pain is, and how to modulate it.
The closest I have come to this was when I had surgery on my foot and they nicked a nerve when they injected the anaesthetic into my ankle. It was only a sensory nerve, but it knocked out all the feeling around the inside of my ankle and that bit of the bottom of my foot. It took many months for the nerve to start to grow back again, and I was very lucky it did. But when it did the brain had to recalibrate. At first when going into warm water, whether it was a bath or the hydrotherapy pool, I had excruciating pain in that area. And when I was walking in the pool it felt like that foot was walking on glass.
So I told my brain to shut up and stop being so stupid. It was clear there was no glass there, and that the water of my bath wasn't boiling.
I would slowly dip my foot in the bath and take it out again until I could tolerate the pain, and I would walk up and down the pool rubbing my foot on the bottom to get maxim contact. Telling my brain to recalibrate. It did work and eventually after several months of ignoring my brain it finally gave up trying to tell me I was walking on glass.
I know that what you are going through is much worse than that, so I hope you can find someone that understands and can help you kick that clever brain of yours into gear and stop giving you false information!
Thank you for the reply. There is quite a bit to take in there. At the time of my amputation one nurse said I did not need anything for phantom pain as it was all in my head (no idea what was in his head). He was one of those brought out of retirement because of the pandemic. Another retiree was unaware of the updated NICE guidelines on cannulas and near butchered my arm trying to change its location 12 hours before it was removed forever! I reported it to the matron who made her read up the guidelines and some others! In fact a couple of the HCAs were better than both, and one having a family member who was Type I diabetic better on diabetes than the sister and most nurses.
Sorry to hear you are struggling with the pain. Some of the information in our Airing Pain Podcast 'Life after limb loss' may be helpful for you: painconcern.org.uk/airing-p...
We also have Pain Education sessions (a 2 hour online session), which you are very welcome to join. Booking can be done here: ow.ly/bz3450SZb7g
You may also like to reach out to Limbless Association for further advice: limbless-association.org/
If you developed Central Sensitization ( nociplastic pain ) perhaps some weak mint Clonidine could calm your Sympathetic Nervous System.
Being left in severe pain causes our Sympathetic Nervous System to become seriously agitated. We live in a fright or flight survival mode. It’s hard on the body.
Just so you know, I used it at bedtime for over a year. It made me tired but it did help calm my Nervous System. I’ve successfully weaned off of it. Wishing you well.
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