Feet and ankles are screaming at me! : Sorry for... - LUPUS UK

LUPUS UK

30,215 members β€’ 26,792 posts

Feet and ankles are screaming at me!

creaky profile image
creaky
β€’6 Replies

Sorry for being dramatic, but I'm so fed up with my feet and ankles.

They are always a problem for me but at the moment they are awful, making walking anywhere a misery. I have sharp pain in ankles and constant burning on the top of my feet and toes. I can't find anything remotely comfortable to wear on them.

I've had to sleep with them sticking out of the end of the bed, wearing my soft alpaca socks, I can't stand the duvet on them.

I've been using Voltaren gel, actipatch my usual 30/500cocodamol and Pregabalin for nerve pain, Lodene. I've had Andrew's liver salts foot baths, hot packs cold packs.

It got to the point that last night I dreamed that I was at the dentist and I asked him to amputate both of my feet! πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚

All advice welcome! Xx

6 Replies
β€’
Barnclown profile image
Barnclown

One possibility: Erythromelalgia (EM)....mine is simultaneous with raynauds

Probably one of the best sources of info:

rarediseases.org/rare-disea...

BUT there can be other causes of the symptoms you’re describing.

Anyway, EM is known to drive sufferers to thoughts of amputation...as does Complex Regional Pain Syndrome (CRPS), which experts think has much in common with EM...the above EM link also explains the overlap between EM & CRPS.....

some say CRPS is Reflex Sympathetic Dystrophy Syndrome (RSDS):

rarediseases.org/rare-disea...

πŸ€πŸ€πŸ€πŸ€ coco

creaky profile image
creaky in reply to Barnclown

Thank you, great info, I've had to stop my Mycophenolate for the last few weeks, due to a large ulcerated cyst under my upper eye lid, I've started it again now but I think that is the source of the pain.

I do have Raynauds in my fingers, but it hasn't effect my feet before.

Feeling a bit better tonight. πŸ’

Barnclown profile image
Barnclown in reply to creaky

Poor eye!!!!!

Glad you’re feeling a bit better tonight

Take care πŸ˜˜πŸ€

creaky profile image
creaky

Thankyou coco πŸ€—

Paul_Howard profile image
Paul_HowardPartner

Hi creaky ,

If you haven't seen our factsheet, 'LUPUS and the Feet' you may find some of the information helpful. You can read and download it at lupusuk.org.uk/wp-content/u...

creaky profile image
creaky

Thanks Paul, I had seen your fact sheet, I think that I have two problems, I have a burning pain on the tops of my feet and tips of my toes which I think is nerve pain, and osteoarthritis in my ankles, which I believe is getting worse. I going to ask my GP if I can get some new xray.

I had a few really back days pain wise, it's a little better now.

Thankyou for your help.

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