I was recently diagnosed with EM. It’s full blown; the telltale symptoms came on very quickly. My neurologist said I should limit the time I am on my feet to 30 minute segments. I haven’t been following his advice and have been suffering daily flareups, some taking several hrs to recover from. It’s so hard, as I love gardening. Can these repeated episodes cause permanent damage to my vessels & nerves or hasten the progression of this disease? Just wondering.
Beth, Great question…I would like to know this also.
Hi Beth
First off, I'm sorry to hear this is so bad for you.
As a male, I've found a loss of hair on my toes and almost like scaling type surface on my toe joints when I have a regular set of flares. My neurologist has said due to lack of blood/oxygen or nutrients.
When I have a 'break' from these - aspirin helping or cold temp for a few days... the frequency is less and I can see the skin smoothing back and the hair regaining slightly. It would seem that I have a break from the hypoxic events that damage the underlying vessels and disallow nutrients.
Problem is, what is the underlying problem causing this? Have I claimed back some 're-gneration' by this? Tough question, as I might have only masked what is really the cause...
Ocker said:
Hi Beth
First off, I'm sorry to hear this is so bad for you.
As a male, I've found a loss of hair on my toes and almost like scaling type surface on my toe joints when I have a regular set of flares. My neurologist has said due to lack of blood/oxygen or nutrients.
When I have a 'break' from these - aspirin helping or cold temp for a few days... the frequency is less and I can see the skin smoothing back and the hair regaining slightly. It would seem that I have a break from the hypoxic events that damage the underlying vessels and disallow nutrients.
Problem is, what is the underlying problem causing this? Have I claimed back some 're-gneration' by this? Tough question, as I might have only masked what is really the cause...
Hi Ocker,
I too have noticed that the skin --in my case, on the tops of my feet-- has a slight corrugated texture. When I run my hands on up my lower legs, the skin feels smooth again. My hubby can’t feel a difference, so I wonder, am I imagining it? Now I’m certain I’m not.
As for my most recent flareup of last night, it is now morning, & for the first time, my feet have not calmed down. My lower legs feel very slightly simmery. I think I’m playing a dangerous game. No more pushing it. My case is complicated (see my profile). I will follow my doctor’s advice. Certainly no more 2-1/2 hrs gardening, even if the weather is cool. I better rethink this hobby.
As a newbie to EM, I’ve so many questions. But enough for now. Thanks for your reply.
Many smiles, Beth
hi Beth,
Take it with a grain of salt because I've not been officially diagnosed.. May be soon tough.
Along with the scally skin, I observed some veinules stay dilatated on my feet, but they're not painful or anything. They just make my feet look funny. I have to stand for lond times in my job, and I still can endure the pain at the moment, and I like my job too much.