I have suffered phantom pain since my amputation over two years ago. Some consultants think it is worse because I suffered severe pain for months beforehand as treatment was delayed because of you know what. It was improving but worsened after my revision. I am on 3 x 300mg Gabapentin daily but occasionally it is not enough. I have been awake since 2:00 and up since 6:00 because of phantom pain. It has eased since I added a PRN opiate in the early hours.
I was wondering if anybody else here is an amputee and suffers phantom pain. Gabapentin is also prescribed for diabetic nerve pain but the two are very different.
Have a good weekend...
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MichaelJH
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Sorry to hear your in so much pain! I hope you feel better soon 😘
Hello
I am so sorry to hear how you are suffering
I take Gabapentin for pain and can take if I wanted as much as you do but I find with any painkillers you can start to get immune t them and then your body needs more to get the same effect
You are a lively man and do not deserve to be suffering and I hope they can find a way to try and make this better for you x
Sorry for the long reply but I really feel for you, not that I have this but a member of my family lost not legs and suffered greatly with this.
Obviously I am not going to say what’s doses you personally can take or should take but the Gabapentin could be raised higher if appropriate for your conditions ( I personally found this medication controlled the pain I suffered not your type but it was terrible to try to get off it - literally had withdrawals)
My relative with phantom pain had to use carbamazepine for the pains but again not sure if you’d be suitable or if it is now superseded by newer medication, sometimes Pregabin is used and there are many others that could be tried if you’re a candidate.
If it’s your GP trying different drugs and no benefit maybe they could refer you to a pain management clinic where they will maybe have alternatives
Depending on what has been amputated and how long ago surgery was performed something that is not a drug and used externally is a TENS machine - I had slipped discs in my back and once I’d built up the impulse levels (takes a little time) but the pain was helped - they use these for Labour pain also.
Definitely go back for more discussions with doctor, ask for pain clinic referral, see if you’d be candidate for TENS and maybe even acupuncture!
Hello, so sorry to hear about your pain. I have not tried the Gabapentin for nerve pain from Diabetes, I take Dihydrocodeine, but perhaps yours is stronger. I do hope you get some relief somehow. Judi
I do not suffer with phantom pain but I have taken Gabapentin in the past. It’s a powerful drug and, you are correct, it is a different kind of drug to a painkiller. You don’t seem to be on a high dose so maybe the doctor would increase it for you. I was taking a higher dose when I pulled out a disc in my back. I stopped taking it as soon as I had an MRI and was told the disc had gone back on its own. You. Have to be very careful to wean yourself off it though. I hope you’re out of pain soon or at least you get a break from it for a while. Take care.
Sorry to hear you are getting phantom pains. My sister had her leg amputated above the knee 43 years ago, and still gets phantom pain even now, although not constant. She tells me a phantom itch is worse.
One thing she has noticed is that if her own leg gets hot, or cold, she has the same sensation in the phantom limb, so finds it a help to keep her natural leg comfortable.
Pain management clinics are a good idea, but in my area the closest one has a wait of 204 days, and the next closest is 138 days.
Have you thought of trying patches. Can't remember what they are but have been discussing them with my GP as after 20 years on my tried and tested pills they are now becoming less effective (or the problems are getting worse), and are gradually building up some side effects.
Amitriptyline is often prescribed for pain, rather than for being an antidepressant. It does also help you to sleep. It might be something else you could try?
it might be a bit left field for you, but have you considered hypnotherapy? At the very least it is relaxing and has absolutely no side effects, unlike opioid. I found it very helpful and can still self hypnotise myself, which is great when I'm struggling to sleep.
My GP prescribed Amitriptyline for nerve pain in my neck and it worked a treat for the pain, but unfortunately sparked off an episode of atrial fibrillation so I avoid it like the plague now, and wouldn't recommend it to anyone with a heart problem.
hi my GP thinks I have peripheral neuralgia and prescribed amitriptyline, it has really helped the tingling in my hands and feet,I have had a transplant but she said it would be fine to take, and wouldn't interact with my other meds. Char
I'm glad it works for you. It certainly worked for me with the pain, but after the AF I won't have it again. It's interesting how different we all are, and it is the only drug I have ever had a reaction to. Best wishes, stay well.
I never ran it by my transplant team maybe I will mention it next time I go just in case it isn't suitable, my GP told me I could take brufen and the hospital said absolutely not, probably best to let them know. What a shame you couldn't use it when it worked. Take care char
I have nothing to offer but love and best wishes. And thanks for all your wonderful contributions to this site which have helped so many. Perhaps planning the next event would help.
This sounds a beastly burden for you, I’m sorry you have to suffer thus.
It would be interesting to know if hypnotherapy, or any other similar alternative therapy, could help the part of your brain that is doing this somehow relax or switch off. Anyone reading got any experience on this?
You are much appreciated on this forum and I, for one, am wishing you the very best.
Hi Michael My first reaction is that anything is worth trying especially the hypnotherapy but I wonder what it is in your body that produces the pain. Nerves, memory cells? I would be worried about trying too many pain killers when I did not know what exactly was causing the pain. The pain killers themselves can cause so many problems but at least with hypnotherapy there hopefully wouldn't be any side effects. Best of luck.
The mind and body connection is indeed fascinating.
As someone who lives with refractory vasospastic angina, a TENS machine is in my coping strategies tool kit. Also in there are hot water bottles, music, distraction techniques, breathing and relaxation, meditation, tai chi and yoga.
This managing pain is a full time occupation.
Have look at the gate theory of pain by Melzack and Wall.
So sorry to hear of your constant pain. It is so wearing that you get stuck in a vicious loop. I wonder if acupuncture might help. It is a proven treatment for many conditions. Hope you find a suitable relief soon.
Just read through all of this and at least be more knowledgeable. There is a chance of nerve damage after limb amputation that only an expert could advise on.
so sorry you are in so much pain. My husband takes amitriptyline for nerve pain which helps take the edge of the pain. Hope you find something that can help you with this.
You don't say which limb is amputated and at which point it is amputated, but I have something for you to try which will not involve any drugs or meetings with clinicians. I am not an amputee myself. I used to work in an MRI research centre at a University. One of the main branches of our research was functional Magnetic Resonance Imaging (fMRI). This involved putting the patient inside a head coil in the scanner lying flat on their back. the mirror on the head coil allowed them to see out of the scanner towards their feet while the scan takes place. I was asked to make a piece of apparatus for arm amputees suffering phantom limb pain which had to be completely non-magnetic because of interactions with the scanner. The device was simply a board with a mirror on it which was set at an angle so that when the board lay on the patients pelvic area, the patient could see their arm and also a reflection of that arm in the mirror which looked like the amputated arm. During their scan, they would move their arm slightly and it looked to them as if they had two arms moving. This was thought to reduce the sensation of pain and was visualised in the fMRI scan of the patients brain which came from the head coil. The only purpose of the MRI scanner was to record pain sensations in the brain as the arm was moving, so you only need a mirror mounted at an angle to try this. I was told at the time (about 20 years ago), that this was a great breakthrough and would likely become a standard treatment, especially as the reduced pain lasted long after the mirror treatment stopped. I've not heard anything about it for a long time which might be because it was thought not to work or not to work for long enough after the mirror treatment. Obviously, this will not help double amputees and it might be more difficult to set up for leg amputees, but not impossible. Arm amputees can easily try this while sitting at a table with the board on the table and the mirror set at an angle that the patient can see a reflection of their arm in the position that the amputated arm would be in. It's important for the patient to visualise both of their arms moving while viewing their arm and reflection at the same time. I hope this helps.
These machines are Trans Cutaneous Nerve Stimulators. Stimulation of the peripheral nerves in order to block/interrupt it’s pain impulse to the brain. It is also said tho increase the blood supply to the area to assist healing as also increase the endorphins (feel good factor) hormones.
It is non invasive therefore no risk as with chemicals such as medications side effects/dependence/addiction etc
They usually position electrodes in correspondence to the nerve that feeds the particular area of pain - eg we nerves controlling the legs may be placed on the back or on the leg above the line the verve would follow (so hard to explain here)
This is also why often Accupuncture can help as again the nerve is stimulated but this kind is via a very fine needle being inserted into the skin (obviously seek out information on the persons qualifications and hygiene practice and certificates ( I used a physio I knew when I had mine)
These two things are not one size fits all, in the same way that medicine that works for one but not another,
Trial and error and sometimes using with chemical relief can reduce the amount taken as they can work together.
I am sorry that you suffered phantom pain after amputation. You said that your treatment has been delayed and that explains that you had to take opiate for breakthrough pain. How long has your condition and treatment delayed. I am not amputee, but I take opiates following attack of pancreatitis due to gall stones and biliary sludge. I am waiting for cholecystectomy, and I just wondered how long I will be dependent on opiates. Sorry I could not answer your query. Best wishes.
Hi, I have much experience of a helpful therapy called EMDR, which can resolve/ help phantom limb pain. There is a lot online about it but here is one article worth looking at with videos to explain more. emdrhealing.com/can-emdr-he... Some NHS EMDR is available (you'd need to ask your GP) but also there are trained therapists nationwide for a private fee (eg search on Counselling Directory for emdr practioners counselling-directory.org.uk). Certainly worth looking into, I hope you find a way to lessen your pain. Best wishes.
Michael, Hi, sorry to hear that you are suffering. My Mum had the same issue after her leg was amputated, it was awful. She was in a bad state and unfortunately never got up, but what 8 have learned from other people who were in the hospital at the same time, most of them had the same issue and only those who manage to move around and later had artificial legs fixed, managed to get rid of that pain, especially when moving around, 5hey found it helpful. Obviously don’t know about the details around your situation but hopefully this helps to understand the way people go around it and concur that pain. 🚑
I don't know if you've come across this website about pain Michael but I thought I'd post a link as it might offer you some food for thought, or at least an interesting read with a cuppa.
Pain management is very complex.Just a thought, as someone who lives with refractory angina, I am not sure about the phrase 'taming the beast' ? My angina is chronic with acute episodes which mean I need to go the hospital.
I had a look at the link however I didn't feel able to engage with the website.
I live with my pain and heart condition. This suits me. I don't find using the words suffering or describing my pain as beast or devil helpful.
There is no right or wrong way, just what suits us as individuals.
I used this website which uses slightly different language.
"Taming the beast" is the name of the website, it's neither my idea nor my website. My post simply points to a website link that has content loaded by experts in pain management, which I wondered might be of use to Michael who has posted regarding phantom pain. That's the context.
As you say, we're individuals. Whatever works for you is right for you.
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