Reply To: Screaming pain

Larry –

So much of what you wrote could have been written by me.  I remember the loss of mobility and how pain utterly colors your world.   I had a severe case of quickly moving CIDP.   I went through a SCT – and it was afterwards that the real pain kicked in.   It seemed like as my function returned the pain increased to a point where it was utterly crushing.   At my worst – I was on 3000mg day of Gabupentin,  Lyrica, Disapramine, Prednisone, methadone augmented by Norco “kickers” along with Atavan and Ambien to relax me and help me sleep.     They say it is because I had sensory predominent CIDP.   For a variety of reasons I feel fairly sure that in my case it was the high dose cytoxin (given as part of the SCT chemo regime) that interacted with the frayed sensory nerves – like dipping them in acid.   The pain finally ebbed about 18 months post sct.   At the same time – I basically went cold turkey on all my meds.  I will say that I think with the pain meds – i never felt addicted – but I did notice that when I was on them – as soon as they started wearing off the pain increased enormously.  After I went off of them – that didn’t happen – of course the nerves were probably healing as well.   I also had alot of chest pain – unrelated to any heart issue – there is a large bundle of pererphial nerves under the breast bone – that in my case were impacted.  The effect between that and my feet resulted in a “whole body” ” ringing pain” that radiated through my body. Stress seemed to induce it – and if I walked on my feet – the pain of the walking induced stress and that would trip off my chest – and pretty soon my whole body was clanging like a discordant bell from all the pain.   One thing that would help calm it down was soaking my feet in ice water for 10-15 minutes and taking a norco – that produced a calming effect on the whole body.

Iam a big advocate of the SCT.   I went from 100% bed bound with breathing difficulty and maybe 2-3 months of life left – to 100% recoverd – except for the pain which now is a low enough level that I can work around it.   2 days ago I walked for 6 miles – something unfathomable to even think about before.

I hear you about the pain – it changes your world.  If you would like to talk about it – I would be happy to speak to you!

Jim