Janetfolley

[janetfolley]

Does anyone else suffer with hot burning feet/legs at night it's driving me insane as I'm awake most of the night...have been to GP as suffering with this condition for past 8yrs or so but all I get is a don't know. Can anyone tell me the cause

[Jlruggie]

Could it be due to spinal misalignment? I have it too. It goes away when I align my neck and spine with yoga and chiropractic adjustments, sleeping with legs raised, massage. Legs up the wall yoga position is helpful. Laying on the couch, sitting and extra weight always makes everything hurt. Most doctors would give pain pills for it

[Jlruggie]

janet, my name is Janet too! I’m sorry your feet and legs burn. I’ve had pbc 15 years. I get it too. Yoga daily, ice baths and moving work. Couch and sitting make it worse

[CeeCee101]

have had this too but for me it’s almost like a different manifestation of itching which tends to be worse on feet and palms. Also restless legs is common with PBC.

[janetfolley in reply to CeeCee101]

Thank you for your feed back and yes I get terrible restless legs especially if I'm tired

[kingsnorth]

Hi Janet l have PBC as well as Sjogrens l have been getting the burning for years mine is caused by neuropathy l have been prescribed Gabapentin

[Nicky01]

Hello Janet

I too suffered dreadfully from burning feet / pain in legs. Was referred to a Neurologist due to a culmination of symptoms and he prescribed me Amitriptyline Tablets - 10-20mg a night. Benefits: I now get a good nights sleep. Negatives - very dry mouth (worth it…!) Hope you get some relief.

[janetfolley in reply to Nicky01]

My GP also have me amitriptyline but I only take small dose of 10, perhaps I should try a larger dose as I still wake up during the night

[pbc-zero in reply to Nicky01]

Hi there. I was diagnosed one year ago and am fortunate to not have many problems, but I follow all the posts here for info. I just want to say here that dry mouth will lead to cavities and gum problems. My dentist has me on mints, gum and toothpaste with Xylitol as the active. Research for knowledge and use Xylitol products liberally to protect your teeth and gums!!!

[Nicky01 in reply to pbc-zero]

Hi - thanks for the information. Will do some research. 👍

[butterflyEi]

has your GP done a full blood test including b12, I had tingling an heat which was dismissed until my mother's doctor suggested la blood test turned out I had pernicious anaemia.

if GP not interested ask your specialist if it can considered a PBC symptom he may be able to help.

also the PBC Foundation run a Q&A with specialists, check out their web site for the next session and send in your question. They are not able to give specific advice but can point you in the right direction