krisp 03/04/15
Last reply 2 years ago

Anyone else heard of this?
It often comes secondary to an autoimmune disease?
Shows up as red sometimes swollen extremities that result in pain tingling burning etc usually upon exertion or heat etc
I get this whenever I put slippers on or lately if I’m walking around, only relieved if I put my feet up?! Yet I’m still undiagnosed, is it worth a call to the neuro?
Do any of you get this or is it something you put to as Ms that may be this?

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2 years ago

You’re doing your research aren’t you, @krisp ?

I’ve never heard of this term, but having looked it up, it does look like one of the symptoms associated with MS, neuropathic pain.

The treatments for Erythromelalgia are also similar for this particular MS symptom.

2 years ago

Hi @stumbler yeah it’s the self employed control freak in me that needs to feel like I at least have some control over what may or may not come.
I think I’ve had the erythromelalgia off and on for a few years, they also say with the secondary type caused by Ms it flares up during disease activity
Thought it might be of interest to anyone who has a similar thing on here or anyone browsing via Google etco

2 years ago

Hi Krisp I have not heard of this but like you I was doing lots of research until recently. Trying my best to understand the disease! I am also a control freak and the thought of not being in control is that scares me! I have now taken control of my diet as that is all I can so whilst waiting for a diagnois. As I am not on any medication, they only chance I have to try and control it is by diet and lifestyle changes. Have you looked into lifestyle changes?

2 years ago

Being a neurology patient is not a good place for a control freak! I should know 🙂

2 years ago

Hi holly
What type of lifestyle changes are you thinking? I eat pretty well usually, never smoked, drunk etc always been sporty.
I’m full up on vitamins too, B12, D3, biotin, magnesium, omega 3 you name it!

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