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#16846 - 02/17/08 03:43 PM Skin Evolving???
luckelizard Offline
Member

Registered: 02/26/03
Posts: 190
Loc: Corpus Christi, TX, USA
Having alot of questions due to my skin. I need some advice or support from friends. About a year ago I began having infections every few months and having to go to the hospital to control them. Now around New Years I began a different "infection" at first i thought I was getting bitten by the many roaches we have and that those bites were getting infected. Most of yall should remember all the times i ranted on here because of the stupid doctors in my town all they ever told me was that it was my skin and send me home with wierd meds that had nothing to do with my skin. Now I recently went to a doctor and they did biopsies to try and figure this out. supposedly the results came back that this is just my skin. I asked alot of questions and he said that it was all part of cie. I don't understand if this is how my skin is supposed to be why did it take 26 years to show up? Has anyone else's skin evolved into something that is so painful and itchy that the quality of life just sux. I feel like all i do now a days is sleep and scratch. My husband when i get too bad makes me take an itch pill and those keep me drowsy for about 3 days. I hate the fact that I can't be the mom and wife i want to be. i miss the person I was before all this began. I just need some advice on what to do and if this had ever happened to anyone before.. Thank you..

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#16847 - 02/18/08 03:11 AM Re: Skin Evolving???
cara&babyt Offline
Member

Registered: 07/12/06
Posts: 258
Loc: Fort Walton Beach, FL,USA
I am so sorry I cannot offer advice, it must be so hard for you. I wish I could offer something, it must be so painful. I hope relief comes your way soon, keep your head up and if your insticts tell you there is another reason than what the doctors say, follow it. I'm sending thoughts and prayers your way. Cara
_________________________
Cara Griffith and Teofilo Tundidor III (son 3 with nb-cie)
patricestudios@hotmail.com
Ft. Walton Beach, FL

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#16848 - 02/18/08 02:55 PM Re: Skin Evolving???
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
Hello...

I'm so sorry that I can't offer any advice to you. I have been having a tough winter with it being so cold and using more forced air heat but I don't think this could be your problem.

I know that both my brothers developed allergies later in life. Have you been tested for any new allergies? Maybe it really is something totally separate from your skin but all my docs jump to that conclusion too.

My thoughts and prayers are with you while you figure this out. I'm so sorry that I can't offer more.

------------------
Sarah
35 with EHK
_________________________
Sarah & Son
EHK & ARCI
"Today is the Tomorrow that you worried about Yesterday, and all is well"

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#16849 - 02/19/08 12:50 AM Re: Skin Evolving???
luckelizard Offline
Member

Registered: 02/26/03
Posts: 190
Loc: Corpus Christi, TX, USA
when i did the biopsy's the doctors said the results came back saying it was just my skin. i even asked if i could be getting by some type of bug and getting infections from that they said no that they tested for that.. I just don't know if it was a mix up or if not everything was tested.. all i know is that i know had to go in debt buying lotions.. everything is burning right now even the over the counter stuff without the acids.. so i don't know what to do.. deal with the itching.. or deal with the burning... just in alot of misery right now.

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#16850 - 02/20/08 07:54 PM Re: Skin Evolving???
immystique Offline
Member

Registered: 03/09/05
Posts: 271
Loc: Grand Junction, CO, USA
You poor thing!

It's definitely NOT normal! You shouldn't be hurting this badly. Usually (but not always) CIE and Lamellar tend to improve as we get older.

I'd do what Sarah suggested and have an allergy test done. Also make sure you don't have a staph infection. And I doubt that "everything" was tested.

Are you going to a walk-in, type clinic or ER, or do you see a regular dermatologist? I don't like the walk-in/county health clinics--they are mostly just a bunch of fast-track college rejects! No offense to anyone who attended a fast-track college, but the one I worked at--CollegeAmerica--was pretty much a waste of student's $30,000! Of course, some actual dermatologists aren't much better!

Try switching up your detergent. Use something like Dreft or All "Free & Clear". Don't use fabric softener. Use Cetaphil to wash your face and body. That is, if you haven't done all this already!

And get thee to a different dermatologist! See if FIRST can recommend one in your area, or at least within a day's travel.
_________________________
If the grass looks greener on the other side, maybe it's time to start watering your lawn!

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#16851 - 02/20/08 10:18 PM Re: Skin Evolving???
luckelizard Offline
Member

Registered: 02/26/03
Posts: 190
Loc: Corpus Christi, TX, USA
The only derm in my area that takes my insurance is a walk-in type place. it is an allergist/dermatology.. i know they are all quacks but what is a person to do.. I would like to go elsewhere but for the time being my insurance won't allow it and then i have no car.. so lets just keep piling things on.. they said they don't know how to do allergy testing on my skin..i think withing the last 3 days i have had a total of 6 hours sleep.. I just wish there was a way to just stop breathing at times.. because honestly this is no way to live.

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#16852 - 02/21/08 07:02 PM Re: Skin Evolving???
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
((((( Hugs from the North )))))

Have you tried taking something like Benadryl to calm everything down long enough to get some sleep?

Lacking sleep really makes everything much, much worse as our usual tolerance and patience is shortened.

Try bleaching all your sheets and towels as well as using a "free & clear" detergent and no fabric softener. You are definitely reacting to something because this isn't normal, as far as I know.

------------------
Sarah
35 with EHK
_________________________
Sarah & Son
EHK & ARCI
"Today is the Tomorrow that you worried about Yesterday, and all is well"

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#16853 - 02/21/08 07:47 PM Re: Skin Evolving???
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Crystal, maybe you should take pictures of the problem areas and try to call one of the knowledgeable doctors that aren't in your area. You can get someone's contact info from FIRST, and they can connect you to someone like Amy Paller or Leonard Milstone or Peter Elias. If you can send them the pictures and explain what is going on, maybe they can help you over the phone or through email, which you can print and take back to your local doctors.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#16854 - 02/28/08 05:50 AM Re: Skin Evolving???
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Oh Crystal, I am sorry I haven't been around to try and alleviate your pain.

Listen, do you have salt baths...try and put heaps of salt in the water, and see if it kills off anything, OR, at least alleviates your itching.

Have you heard of ZYRTEC...it is an antihistamine, meant to be for allergies, BUT I SWEAR IT IS A MIRACLE WORKER, stopping me from scratching overnight (in my sleep). Put it this way, I am not ripping myself stupid with neotigason, because of ZYRTEC...

I guess you have a lot of stress in your life...I find that occassionally I have breakouts where I am so itchy, and the itch means that you have some underlying infection in the body/skin...

For me, during extreme stress periods, my EHK skin does break out (like having the chicken pox on the arms and legs)...

it makes me so mad, that someone with a severe form of Ichthyosis, can't get financial assistance, or at least some sort of consideration, when they are living below the average wage...

Do you have a lot of scale at the moment...You know that with EHK the bacteria really breeds underneath the scale, causing infection and itching. That is why it is important to try and get it off if you can...

Without the expense of the drugs, and the acid creams which I know are too severe for your skin...I WOULD SOAK FOR 2 HOURS IN THE BATHTUB...keep refilling it up with fairly warm water...Until the skin goes white, and then SOME of it will come off quite easily with not to harsh rubbing with a soft face washer.

I truly think that this is what is happening with you...because you are not able to treat your skinm the way you want to...(due to fincances) then your skin is getting infected underneath the scale...AND DRIVING YOU ABSOLUTELY CRAZY...

Do you like fruit Crystal, try and eat plenty of Citrus fruits...for the Vitamin C. That might just help a very tiny bit...

Something just occurred to me Crystal...Have you been feeling very anxious with your getting married, OR very excited about the whole period this past year?

Because FOR ME, stress and excitement can make my skin break out and itch!

Did you say whether you have been or are on any antibiotics at present?

ALSO, do you have any animals? I have 2 cats, but kimmy who died 3 years ago, was always lying on my body, and her fur used to embed into my skin...the skin would just grow around the fur...and within a few hours, I would get intense itching at the site, and it would form a red line along the piece of fur and it would blister...

Before I even realised what was going on, the Derms did a biopsy on my leg, and found nothing...couldn't explain it...then one day I could see the fur in there, so whenever it happens now...which is hardly ever...I just get a needle and pull the fur out...and the redness and itching instantly disappears.

Next time, you get an urgent need to scratch One site on your body, just look closely to see if there is a piece of cat or dog hair underneath your skin.

OH BOY, MY ARM IS ABOUT TO DROP OFF FROM TYPING ALL THIS...

I hope any of these suggestions is of use to you.

Lots of Love and a BIG SIGH
Pauline
XXXXX
xxx
x

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#16855 - 02/28/08 02:05 PM Re: Skin Evolving???
luckelizard Offline
Member

Registered: 02/26/03
Posts: 190
Loc: Corpus Christi, TX, USA
I want to thank you all for your suggestions.. I have taken both a salt bath and bleach bath.. and I feel fine as long as Im in the bath I don't itch.. But as soon as I got out of the bath the itching starts again.. I think I am getting more tolerable with it now..
As for scales.. they are really thick as I have found out I was allergic to something in most lotions.. not quite sure what that would be. Then I got a really bad sore so im a little weary to get in a salt bath at this time so as soon as sore heals you know im back in that bath...lol
And as for being able to examine all the blisters and itchy areas..They are around my neck, back, and shoulders.. not really able to see.

Thank you so much everyone for your input and thoughts and prayers... love you all... xoxoxo
Crystal Rose

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