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Phantom Pain

M

MikeyBikey

Well-Known Member
Relationship to Diabetes
Type 1
I have been asked a few times to write something about Phantom Pain. The problem is despite the first time it is recorded is in the 16th century by French troops who survived amputation on the battlefield. Despite the passage of centuries very little is known about it. The term Phantom Pain only came about in the 19th century. Not every amputee has Phantom Pain but some suffer it quite severely. I have been I am told told I am in the top 10% for severity. It is thought mine might be worse that because of the pandemic treatment for what initially started as a small ulcer was delayed for four months by which time half my foot was an necrotic. When they eventually decided to see me I had also developed sepsis and in the weeks before my main diet consisted of antibiotics and painkillers. It is thought the fact that I had serious painful so many months contributes to the severity as memory of the pain is buried deep within the brain. It is weird because your are eyes connected to your brain and can see there is no limb there ,but your brain tells you it hurts!

I am writing this this evening as I am suffering quite badly with Phantom Pain. As those of you who look at the Waking BG Readings will know I often have disturbed nights with Phantom Pain and am often up at 2:00 or 3:00am. After series of bad nights I have had two undisturbed nights but am concerned I am in line for another bad night! This afternoon, about 5:30, I got a tingling sensation in the leg/foot that is not there. This was rather more intense than the very frequent feeling the limb is still there. About 6:00 I started getting powerful spikes of pain that resembled a cramp in the foot. These last about five seconds and occur every few minutes. After two hours I took two Paracetamol my first line. However it does not seem to be working and I will probably take something stronger shortly. The recommended painkillers for Phantom Pain are Gabapentin and Pregabalin. Gabapentin does nothing for me and I gave it up earlier this year. You are meant to reduce it slowly over a few weeks but I decided one morning no more, and suffered no withdrawal symptoms or change in the frequency of Phantom Pain. They prefer not to prescribe Pregabalin to people over 60 or with reduced kidney function, and therefore I have not tried it as I tick both boxes. I just hope it settles so | can get a reasonable night's sleep and not spent tomorrow feeling exhausted and very grumpy.

Thanks for reading.

I will try to write a better discourse at some stage.
 
<3 <3 <3 <3 <3
thinking of you
love gail
 
That is really tough Mikey. I hope writing it down was cathartic in some way. I am sure those of us who know you, have a little understanding of the suffering you endure but I am certain it is impossible for us to comprehend the truly horrific reality of phantom pain.

You say that yu waited 2 hours before taking paracetamol. Do you delay taking them so long because you know from experience that the pain will last a long time and you don't want to take it early and then need it when the pain gets stronger but not be able to take more until 4 hours after the first dose. I am just wondering if taking it early before the pain gets too bad might help to prevent it getting so bad.
I know for me with my acute migraines, getting paracetamol into me at the slightest hint of one starting was by far the best tactic than waiting to be sure, because by the time the paracetamol was starting to work I was in a lot of pain and very ill with other aspects of the migraine and I would lose the best part of a day to it, but taking the paracetamol really early meant that I might only feel unwell for an hour or two and far less unwell than if it had progressed to if I hadn't taken them then. I appreciate a migraine is very different to phantom pain, but it just struck me reading your account, that soldiering on as long as possible before taking pain medication might not be doing you any favours.
There will be odd occasions when I have taken those paracetamol very early and perhaps not needed them but for those very odd occasion which did me no obvious harm, I had many days when I improved my quality of life enormously by taking them early, making the pain much less severe and the length of the attack much shorter and also helping alleviate the other symptoms of fever and nausea and diarrhoea that I get with my migraines. Plus for me, if I don't get the paracetamol down early enough, I can't keep them down and dare not take more for 4 more hours afterwards, by which time I can be vomiting and passing out, so getting them down me at the first suspicion of an attack is hugely beneficial. Just a thought....
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MikeyBikey said:
After two hours I took two Paracetamol my first line. However it does not seem to be working and I will probably take something stronger shortly.
Click to expand...
Do you take your paracetamol with caffeine? It’s shown to make it much more effective and I find that to be true. Effervescent painkillers I also find to start working faster.
 
@MikeyBikey How are you feeling today? Thinking of you and sending you lots of love
xxxxx
gail
 
Phantom pain is horrid. Apologies if this too much information but I had a total proctocolectomy.

As that was often sore I suffer from yes, phantom rectum pain and the urge to poo. Something which is medically impossible for me to do!

It's not a pleasant sensation at all...
 
Yesterday evening's and this morning's post:

I am also not a happy bunny! My BG had been 6/7 all day but at 5:30 O was hit by phantom pain. By 6 my BG was 9.1 and when I injected at 7:00 it was 13.3. The pain has settled for now after taking the first line 2 x Paracetamol but the sheer randomness of it hacks me off!

Good morning/moaning! BG 8.6. The Phantom Pain of yesterday evening subsided and I went to bed around 11:00 only to be woken by it striking back with a powerful burning sensation on top of the foot as if an oxy-acetylene torch is being played across the foot (I was going to say bunsen burner but suspect younger readers may be unfamiliar with them as apparently some schools around my area do not allow then for Health and Safety reasons). Waiting for second dose of pain killers to kick in.

Totally frustrated with the lack of rhyme and reason of why I go days without Phantom Pain then have four/five bad nights in succession. I have tried to find a pattern to it such as hi/lo BG. too hot/too cold, overtired, etc. but non emerges. About the only consistent thing is when it is bad I get a liver dump and my BG rises further!

One of the most bizarre techniques for its relief is "mirroring". In this you sit down with your legs straight in front of you and put a full length or large mirror between your legs (mirror facing the remaining leg) which is meant to convince your brain you have two legs. It did not work (and felt quite dangerous) but then I am not convinced by suggestive techniques. About a decade ago we saw a magician. At one point he told people to interlock their fingers and then told people their fingers were stuck together. Those around me including my ex could not separate their hands whilst I just interlocked my fingers and separated then repeatedly! 🙂

Easing now so back to bed! (sleep emoji)
 
Paracetamol seems to be a fairly mild painkiller for something which is quite severe pain. Although I take Naproxen I was needing to take alternative paracetamol and ibuprofen every 2 hours for my left knee when I did something the other week and paracetamol doesn't even touch the constant discomfort in my 'bad' right knee.
When I had a trapped nerve in my back 20 years ago I was given meloxicam which was brilliant.
 
Leadinglights said:
Paracetamol seems to be a fairly mild painkiller for something which is quite severe pain. Although I take Naproxen I was needing to take alternative paracetamol and ibuprofen every 2 hours for my left knee when I did something the other week and paracetamol doesn't even touch the constant discomfort in my 'bad' right knee.
When I had a trapped nerve in my back 20 years ago I was given meloxicam which was brilliant.
Click to expand...
I agree: @MikeyBikey, has a medic suggested anything stronger? Also, have you been to a Pain Clinic? Sorry if these are obvious questions! I'm trying to be helpful rather than asking you to waste time and effort just to satisfy my curiosity.
 
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