Burners with Erythromelalgia

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Burners with Erythromelalgia

Postby ariwithpurplehair » Thu Mar 20, 2014 8:26 pm

Hello,

I'm a long time lurker, and a few time poster. I was curious to hear if there were any ePlayans who were interested in discussing their difficulties with Erythromelalgia on the playa. When I was there it wasn't a huge problem, but I did experience some flare ups that made various tasks more difficult--from setting up camp to just walking around. I generally dealt with it the same I deal with it in the default world (resting) but I would love to hear any advice or stories if anyone has them.


Thanks!
ariwithpurplehair
 
Posts: 21
Joined: Fri Feb 15, 2013 6:05 pm
Location: Oakland, CA
Burning Since: 2011

Re: Burners with Erythromelalgia

Postby FossaFerox » Fri Mar 21, 2014 9:24 pm

Wow, I can only imagine what kind of challenges you face and overcome to venture into the desert with that particular condition. A client of mine has it secondary to hypercholesterolemia and I know it's exactly zero fun at all. Do you know what your specific triggers are? If it's the heat that's bringing it about that's a tough one, particularly with exertion. It would definitely pay to set yourself up with a Figjam cooler and be active primarily at night.

If it's stress related (which I know a lot of cases are) I'd recommend trying an over the counter herbal supplement, Rhodiola Rosea. It helps the body limit excess cortisol levels which my client has found to be helpful. Then of course there's the age old wisdom of aspirin, but there's very little non-anecdotal evidence to support that.

Regardless, I seriously wish you the best of luck!
ygmir wrote:Everyone loves you there, and no one cares a shit about you..........all at once. and vice versa.
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FossaFerox
 
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Re: Burners with Erythromelalgia

Postby ariwithpurplehair » Fri Mar 21, 2014 9:53 pm

It can be difficult, but I love Burning Man and I don't want this to stop me from going. Stress, extreme weather, and physical exertion are all triggers (and of course, all part of Burning Man as well) but I try to be responsible so I can deal with any problems without having to bother others. The worst part is not being able to see as much of the city as I would like to, but...shit happens. :), and I still love seeing what I can.

When the pain occurs it is generally beyond the point where aspirin could help, but I have never tried Rhodiola Rosea before. Thank you for the suggestion. :) Seems like it could help with skin irritation and joint issues, as well as with stress problems.

I also should really try the fijam cooler set up, ive read about it a few times and it seems to benefit a lot of burners.
ariwithpurplehair
 
Posts: 21
Joined: Fri Feb 15, 2013 6:05 pm
Location: Oakland, CA
Burning Since: 2011


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