Phantom Pain

[MichaelJH]

As many of you will have read I had a left leg BKA (below knee amputation) a month ago today due to complications of PAD (peripheral arterial disease). With tens of thousands of members I cannot be the first or last amputee. Famous people who suffered the same fate include Jan-Michael Vincent (who played Airwolf) and Johnny Cash. The most common causes of PAD are diabetes and smoking. If you smoke why not give up today!

Anyway onto my problem. One of the issues with limb amputation is phantom pain. Unfortunately I suffer this quite badly. The drug of choice for this is Gabapentin which is also used to treat diabetic nerve pain and restless leg syndrome. I have been max'd out on this for over two weeks now. Every few nights (three nights in last fortnight) I get phantom pain to the point of it preventing sleep. I woke before 5:00 am today and gave up half-an-hour ago and had some Oxycodone to supplement the Gabapentin. The pain is starting to settle now - it was if I had broken my ankle and badly burnt my calf.

So has anyone experienced bad phantom pain and how did you deal with it? Thanks in advance.

[Smileyian]

You are a positive hero in many way. I wish you all the very best in your recovery MichaelJH. Just wondered if your right leg is free of PAD or it is being managed. I cannot relate to the phantom pain my friend. I just wanted members to note that I am 8 hours ahead of you in time hence my posts my seem sent at odd times to UK.

[MichaelJH Heart Star in reply to Smileyian]

Thank you Ian. Unfortunately I also have PAD in my right leg. Once diagnosed I was monitored annually until 2017. The vascular team I was under was restructured and the new lead discharged me saying I can always be re-referred in the event of any issue. One of my GPs did when he saw calcification shadows last autumn when I had X-rays for arthritis. The appointment was for early April so naturally never happened. The amputation happened under a different health authority due to CovID. I am trying to find out how to get regular checks on my right leg but seem to be hitting a brick wall! The ridiculous thing is I have my Jag regularly serviced to prevent problems and in the same way my right leg should be checked. Angioplasty /stents/bypass sooner than later is critical. As I found out too late doesn't work!

[Smileyian in reply to MichaelJH]

Well I am sorry to hear that and hope you can make progress with leg stents or angioplasty. I have become aware of this disease recently whilst in a cardiac ward earlier this year. Many ppl seem to manage it with regular long walks and prescription medicine. Am I correct in assuming amputation is not the usual outcome ? Also may I be impertinent and ask if you were a heavy smoker or have diabetes ? A few questions there so do forgive any intrusion.

[MichaelJH Heart Star in reply to Smileyian]

With regards to angioplasty/stents to my right leg it's more a question of wanting treatment when required in a timely fashion rather than too late as with my left. I started conservative management a decade ago but sadly the disease progressed.

No I do not mind you asking questions. I have been Type I diabetic most of my life and got the Award of the Golden Syringe some years ago. As regards smoking I only smoked for around two years in my youth. I would sit astride my Triumph outside Lemmy Cafe and light up. My group tended to smoke cigarettes like Capstan and Senior Service. Only a wuss would smoke a filter tip cigarette!

[Smileyian in reply to MichaelJH]

Haha.....fantastic that you still present such a great sense of humour after all your strife. I would love to keep in touch on here and see you progress to a near normal life if that is possible. Your advice will be invaluable to me ongoing. Please send your invoice to me in Singapore. On a more serious note, I am 77 next year and because of recent difficulties in climbing hills or steps, I have requested a sophisticated 1 hour Claudation test which you will know doubt be aware of. Of course I do no have the benefit of the NHS but as a PR here and a Senior Citizen I get good perks and quick and super treatment. (Must pay though) 😂😂😂. 38 years with various arrhythmia, 2 cardioversions, 2 ablations, probable Vasospasms (learnt more from Milkfairy than GP ... bless her) and now Claudation tests. All there to be conquered. Are you a Senior my friend ?

[Maisie2014]

My friend had the same amputation and he said he was told to massage the stump. He says he’s now off the painkillers.

I was given Gabapentin for a back injury a few years ago. As soon as the MRI showed nothing suspicious I weaned myself off them (you can’t come off them cold turkey the specialist said). I replaced painkillers with exercise (pre heart attack 😟).

[Hidden]

I don't have personal experience but I know someone that benefited from mirror therapy after an amputation. en.m.wikipedia.org/wiki/Mir...

[MichaelJH Heart Star in reply to Hidden]

Will look into it. It's weird as you know the leg has gone yet your brain gets these pain signals.

[Milkfairy Heart Star in reply to MichaelJH]

Michael I am sorry you are in pain.

Phantom pain is a very strange phenomenon and just shows how the brain interprets pain is complex!

As I also live with a lot of pain in my life I have every sympathy with you.

I found going to see a Pain Management Specialist at UCLH very helpful and I attended a very good Pain Management Programme.

I hope you continue to defy the expectations of the physios 😉

[Hidden in reply to MichaelJH]

Yeah it must be weird, it is still early days too so your body is probably trying to figure out what the hell happened.

[marypw]

Hi Michael, I don't know if you use Facebook and I understand many people aren't big fans.

However, there are numerous health-related groups on there including some for amputees (I just checked for you).

You might get some helpful support and information from them.

Best wishes!

[shopman]

Hi Michael

My father lost his right leg back in the 80's and always wanted to scratch his toes for years afterwards until he passed away. He used to attend the Disablement Services Centre in Newcastle every so often and always used to say he drew a lot of inspiration from seeing the youngsters running around on their "stumps" a lot had had feet or legs taken away mostly for cancer. It is more than good to see you still have your humour and can talk about it.

I don't know if you have seen this at all limbless-association.org/in...

[Bagrat]

I know some people have a degree of success using a TENS machine positioned where the pain is but on the other leg. It ratherdepends how your medics view using TENS after by pass but it is a long way from your heart.

Does rubbing your other leg help??

[Franky62]

Morning .. I had a finger amputated and hand reshaped ... after the surgery it felt like someone was holding a flame under my missing finger and it had grown an inch or two ... it was extreme .. the pain killers wouldn't touch it ..

Fortunately.. I had an Amercian physio who was on secondment to NHS hand unit and she suggested Accunpucture .. WOW after she put the last needle in the pain disappeared .. and stayed away for a period of time.. as I had further treatments it would stay away longer and longer.. until gone .. IT really worked .. the most surprised was me !!

Kind regards

[MichaelJH Heart Star in reply to Franky62]

Thank you for that. I am currently max'd out on Gabapentin but occasionally (like 3:00am this morning) need a top up with Oxycodone!