I've been suffering on and off for 5 years.
I'm 28, used to model and now stay in long shorts and pants even in the Texas heat.. I have been all over even Mayo clinic until I found in my endless search of this horrible painful and disfiguring cycle of cysts>fluid weep>Honest crusting>green like infection covering of ulcerated sore that is not like a scan but cement > bleed / weep> end of cycle to start over.. Always on old areas under chin, jaw bone, forehead and middles my Cheeks , thank God never lips. Backs of arms and on legs. I also feel like I have the flu when it gets bad and have hot and cold sweats and brain fog and no energy. On top of the pain skin (happens all of a sudden my skin hates me all over at the same time ). Purplish hard waxy "scars". I found PL which I had never heard of and even worse the FUMHD subtype... Further reading, could be die to oh her auto
Immune issue or cytomelgavirus/eppsteinbarr.. Well my mom is a celiac but I did not think I had it, and I do have high amounts
Of CYTOMEG AND EBV .. Do you have any connections? There are 3 subtypes of PL and all can happen on our skin at the same time and even be different stages of each subtype!! this adds to
Why it is so hard to diagnose. I got into a new derm in Plano who thought it was auto immune as she said this is not just a skin issue but something from the inside out.. Then I sent over pictures with stages marching photos online I found and they called me and said they have only seen one as bad but 99% sure I finally have a diagnoses. Though no cure and dangerous in adults. I went gluten free as a last resort and only thing that has ever given me times of remission.. I do not have DH which is the skin rash that gluten intolerances can have.. But I believe PL and FUMHD are all inflammation related and auto immune is all inflammation so cutting out additional inflaming substances (gluten) saved my life. It's not a cure but it's given me hope after this horrible disease took over my life after this last round of 7 months and couldn't get out of bed sleeping for 18 Hours a day and lost my job, etc.. and non stop antibiotics and misdiagnoses.
THE ONLY THING THAT COVERS IT.. I never used to wear make up, but I've now had to try and waste lots of money to make myself not look like a leaper.. SEPHORA: MAKEUP-FOREVER HD FOUNDATION, I am a N140 and sometimes N127. It's been only thing for years and it always try anything new in hopes.. I have some Jewish heritage so have olive skin (I was very dark as a child though have lightened a lot, and our skin colors are prone to hyper pigmentation).
Email anytime , this is a miserable process, anyone who even knows what it is is like finding gold! [email protected]
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I've been suffering on and off for 5 years.
I'm 28, used to model and now stay in long shorts and pants even in the Texas heat.. I have been all over even Mayo clinic until I found in my endless search of this horrible painful and disfiguring cycle of cysts>fluid weep>Honest crusting>green like infection covering of ulcerated sore that is not like a scan but cement > bleed / weep> end of cycle to start over.. Always on old areas under chin, jaw bone, forehead and middles my Cheeks , thank God never lips. Backs of arms and on legs. I also feel like I have the flu when it gets bad and have hot and cold sweats and brain fog and no energy. On top of the pain skin (happens all of a sudden my skin hates me all over at the same time ). Purplish hard waxy "scars". I found PL which I had never heard of and even worse the FUMHD subtype... Further reading, could be die to oh her auto
Immune issue or cytomelgavirus/eppsteinbarr.. Well my mom is a celiac but I did not think I had it, and I do have high amounts
Of CYTOMEG AND EBV .. Do you have any connections? There are 3 subtypes of PL and all can happen on our skin at the same time and even be different stages of each subtype!! this adds to
Why it is so hard to diagnose. I got into a new derm in Plano who thought it was auto immune as she said this is not just a skin issue but something from the inside out.. Then I sent over pictures with stages marching photos online I found and they called me and said they have only seen one as bad but 99% sure I finally have a diagnoses. Though no cure and dangerous in adults. I went gluten free as a last resort and only thing that has ever given me times of remission.. I do not have DH which is the skin rash that gluten intolerances can have.. But I believe PL and FUMHD are all inflammation related and auto immune is all inflammation so cutting out additional inflaming substances (gluten) saved my life. It's not a cure but it's given me hope after this horrible disease took over my life after this last round of 7 months and couldn't get out of bed sleeping for 18 Hours a day and lost my job, etc.. and non stop antibiotics and misdiagnoses.
THE ONLY THING THAT COVERS IT.. I never used to wear make up, but I've now had to try and waste lots of money to make myself not look like a leaper.. SEPHORA: MAKEUP-FOREVER HD FOUNDATION, I am a N140 and sometimes N127. It's been only thing for years and it always try anything new in hopes.. I have some Jewish heritage so have olive skin (I was very dark as a child though have lightened a lot, and our skin colors are prone to hyper pigmentation).
Email anytime , this is a miserable process, anyone who even knows what it is is like finding gold!
August 28, 2014 - 3:10pm[email protected]
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