[piatkazParticipant]

Hi
Just wanted to see if anyone suffers from restless feet it's hard to describe but your feet ache and you keep wanting to scrunch your toes up,while your active and walking it's ok but as soon as you sit down you get this odd feeling in your feet and and the more you think of it it makes it more uncomfortable not painful but weird.Bedtime seems worse it keeps me awake for hours.
Any ideas or remedies
Many thanks Ian

[GillParticipant]

Have you looked up neuropathy That can be caused by treatment. Tingly feet and hands and aches

Gill

[piatkazParticipant]

Hi Gill
I have got neuropathy from old treatments but not like this strange how it's just started up when I'm not started any treatment yet
Ian

[batterboy58Participant]

Hi
I had this pretty bad after Velcade and I believe it is one of the side effects. It does get better but I still feel it from time to time but not so extreme.
I believe I was prescribed Amitriptyline for this condition perhaps you could ask your Doctor for something to help.

John

[susan123Participant]

Hi Ian,

Try rubbing 'palmers' cocoa butter into them. I had this whenI was on Thalidomide maintainence. – neuropothy maybe. I tried other cheaper brands but only palmers really worked.

Take Care

Love Sue x

[eveParticipant]

Hi
I agree with John and Sue
Slim never got it until after he finished Velcade,he had Amitriptyline 5 to help him sleep,then when he was in Kings they gave him 25 and said it was a form of PN,I bought the Palmers cocoa butter Slim very seldom complains of his feet now.
I also get Polytar for his skin and must say since he washers in it,has never had any problems with dry skin.
It is worth trying these things.Eve

[piatkazParticipant]

Thanks for all the replies,I had surgery on my neck putting a cage around my vertebrae (C6) due to the pesky mm destroying it and was taking gabapentine for the nerve pain,I stopped taking this a week ago due to pain in neck subsiding and found out through a friend (Deb) that this is used for PN so took it again last night and had best nights sleep for ages, I will see how it goes I've got appointment with my specialist this week to discuss when I go on Velcade so will mention it to him then.
Many thanks Ian

[DaiCroParticipant]

Hi Ian,

I developed PN after my frontline CDT and it was made worse by my Velcade treatment. At times is has proven to be quite painful and it is with me 24/7… at its worst when I am feeling tired. At its best I can only describe the sensation as being like chilblains… Or like that feeling you get as a child when you have been out in the snow… 😛

At its worst my PN crept into my calves and caused great discomfort… But that soon wore off as I finished Velcade… and these days it is more a nuisance than an actual pain. Although it did spread to my hands I am gratful that it never really took hold as I play guitar and other stringed instruments… and that would have been a pain too far. :-/

I take 5mg Amitryptiline tablets to help but I can't say that I've noticed a big difference. I take Gabapentin as part of my usual daily meds but there's nothing to beat rest and a good night's sleep for keeping it under control.8-)

Dai.

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