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DERMAGRAPHIA - Help! It's ruining my life.

My symptoms started about eight years ago.
At first, my skin would itch, here and there.  Not really localized, but mostly the upper body.
As the years passed, the symptoms have progressed to the point where I feel as if my whole upper body is bathed in acid.  
NOTE:  When the symptoms first began, I was not under any stress; did not have anxiety, etc.  (As the doctors seem to insist upon)
I have seen eight Dermatologist (including two Heads of Dermatology at teaching hospitals in Philadelphia).  While they all agree that I have Dermagraphia, they also insist that "emotional"/"psychological" issues are causing the severity of my symptoms.  -  Also, I tell them my skin is burning; they tell me it's "itching".   I say, "No; my skin os on fire".  -  Sometimes it itches, but I don't think it's the Dermagraphia.  When I scratch (my nails are very short and filed down), it looks like I scratched myself with a rake.  The welts scab, then bleed, which causes even more pain.
From my neck to my waist, back and front, I feel like an exposed nerve.
Anything rubbing against my skin (from the waist, up, brings on the break-outs.  Especially on my shoulders, upper back and front.  There aren't many "hives", and they look like normal blemishes.  But the pain...
I am reduced to wearing a very light weight, soft sarang, around the house.  -  This problem has caused me to be house bound.  I go out for doctors' appointments, only, and I rush to get home, because the pain is so excruciating.
The pain wakes me up at night.  Sometimes, I can't even lie down, because the sheets are too much to bear.

Another problem is:  The doctors need to see the break-outs.  Unfortunately, they don't always appear.  The doctors have never seen them.
They tell me:  "You need to come in, when the break-outs are there".  However, they (understandably) cannot see me on demand.
My blood has been tested, and the doctors ruled out eczema and allergies.
They've tried antihistamines, topical medications, like Eucerine, and a couple other I can't remember.

I do not/have not used soap for about 15 - 20 years.  For the past three years, I've been using Johnson's Baby Wash (the mildest I can find, with no perfumes).  -  BTW:   Taking a shower or a bath, even in lukewarm water, is an ordeal (both during and after).  I keep my skin from drying out by using Evening Primrose oil.  It doesn't help the burning, but it does help keep it from drying out.  (I'm a 44 y/o female).
I use very mild detergent to wash my sheets, towels, etc.

The last four years have been the worst, and I freely admit; while I initially did not have anxiety when the symptoms began, I have it, now.  -   I have a great husband, two fantastic children and wonderful parents, and I cannot interact with them because many times, I can't even wear the sarang.  For modesty's sake, I am often confined to my bedroom (my kids and parents live with us).
If this does not bring on anxiety, depression and misery, I don't know what does.

I need to find a doctor in the Center City area of Philadelphia, who will take me seriously.  One who will recognize there are various degrees of Dermagraphia and help me, instead of trying to pass me off on to a Psychiatrist.
I need something to help ease the pain, so I can live again, not a Psychiatrist who's going to put me on anti-depressants.  (I've been on them for Chronic Fatigue.  They only made the Fatigue worse.  I'm more alert, now, than I was while on the antis).

My kids graduate high school and college, in June.  Right now, I don't see myself making their graduation ceremonies.

I am desperate.  Can anyone offer me suggestions on how to ease this burning?  Or tell me what type of a doctor I need to see?  Obviously, Dermatologists aren't it.

Thank you for taking the time to read this rather lengthy post.


Gratefully,

Denise
15 Responses
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Avatar universal
Since this blog is aged, you might not get this post. However, if you do, what you are describing is chronic lyme disease. For the itching and pain, I use athletes foot spray on the area that is affected. I too wish I knew how to get rid of it permanently. Tonia
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Avatar universal
I can completely understand what you are going through. Having to take cold showers when all you feel like is a nice hot bath *****! My dermagraphia started about a month before Easter, and a couple of months after I had a baby. It made nursing unbearable. The whole side of my body the baby laid against would become inflammed and I would have to call my husband to come take the baby away. Any kind of pressure to my skin will make me break out in hives. From, holding the baby to pushing a grocery buggy, or even if I am at the computer and my hand is on the mouse too long. I use those bean bag ice pillows, the ones that are filled with like dried corn or something, almost every night wherever I am breaking out. You can make them at home. I also take massive amounts of benadryl every night. Usually 6 or 8 - 25 mg pills. This is the only thing I have found that keeps the hives at bay. I started out taking smaller doses of the benadryl, but it takes that much to get me through the day without horrid breakouts. I hope this helps some.
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Avatar universal
Per my Profile    --   Goodbye

Denise
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Avatar universal
P.S.

I tried to send you a private message, but the site wouldn't let me.

Denise
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Avatar universal
Dear Dr. Humika,

Sorry I haven't gotten back to you sooner.   I've been trying to care for my dying cat, over the past few weeks, because the Vet kept delaying me with regards to putting her to sleep.   The poor thing died at home and in a lot of pain.

Anyway, I had blood work done about 8 to 12 months ago.  I'm not sure what the Dermatologist was looking for, but the results came out Negative.  (As he expected)

I'm at the point, now, where I can't even leave the house for doctors' appointments.  The pain is unbearable.   My neck, back, shoulders and chest feel like acid is eating away at the skin.   I can't even tolerate a very loose sarang for any amount of time, now.   The material, rubbing against my back and breasts, has me crying in pain.
And please let me reiterate:  The burning is there with and without the appearance of the lesions.    In fact, when this first started years ago, there were no lesions at all.
I don't even think the lesions are linked to whatever is causing this burning.

I use Evening Primrose oil, daily, to help keep the skin from drying out.   However, it does nothing to alleviate the burning.

Doctor, I am at a complete loss as to what to do next, or what type of doctor I need to see.   --   Something in my system is causing my skin to burn, to the point where I can't wear clothing from the waist up,  and I don't know where to go to get tested.  
I don't know what I'm going to do.  I can't live the rest of my life in my bedroom.  I'm beginning to panic.  I'm really, really scared.

Can you think of any type of doctor who would be able to diagnose me?  I'm desperate.  Believe me; I'm not exaggerating when I say: I feel like my life is over.  I cannot walk about nude, and I cannot bear the pain of having anything on my skin from the waist up.

I realize you cannot diagnose me, but can you suggest a doctor who specializes in diagnoses?  Please?    If I have to travel out of the state of PA, I'll do it.  I have no other choice.

Thank you,

Denise
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Avatar universal
Hi,

I am sorry as you must be going through an awful lot of pain and suffering. I empathise with you completely. Have you tried steroid local application creams?

For mild-moderate eczema a weak steroid may be used (e.g. hydrocortisone or desonide), whilst more severe cases require a higher-potency steroid (e.g. clobetasol propionate, fluocinonide).

Eczema can be exacerbated by dryness of the skin. Moisturizing is one of the most important self-care treatments for sufferers of eczema. Keeping the affected area moistened can promote skin healing and relief of symptoms.

Can only offer suggestions as nothing can be said with absolute surety without hvaing a loot at the lesions. Has any blood test been done? Could you let me know the hemoglobin, total leucocyte count and eosinophil percentage ?

See if you can get these tests done.

Regards.

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Avatar universal
Hi Doc,

Please see my reply to "allergic2everything"?
I don't want to be redundant.

If you can think of anything else, please let me know?

Thanks

Denise
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Avatar universal
I'm sorry you suffered so long with the symptoms.
I appreciate your response.  -   Unfortunately, I don't use anything with sugar substitutes.  I've tried diet Coke about 23 years ago, and couldn't tolerate the after taste of the sugar substitute.  Made me nauseous for hours.  -  Even Lemon ade w/artificial sweetener did the same thing, so I just stay away from the stuff.
If I am eating/drinking anything w/Aspartame (Methonal), I'm not aware of it.

I'll tell you; Christmas Eve and Christmas were phyiscal nightmares for me.  I wanted to spend a few hours w/my family, so I had to dress properly.  -  I'm paying for it, dearly, now.
I'm broken out on my shoulders, chest and upper back.  They are beginning to scab over, which is quite painful when I lie down.  They scabs open up and bleed on my sheets.
I would love to be able to run into a Dermatologist's office, right now, to show him/her, because whenever I go, the darn break-outs aren't there.  If they can't see them, they can't take a biopsy or give me anything to help the pain/burning.

I've tried the Calamine lotion and antihistamines that  BhumikaMD  suggested, but they haven't helped.  ((Sorry Doc, I've been in too much pain to get back here and let you know))

At this point, I don't know what I'm going to do.  I can't live in a bedroom for the rest of my life, yet no doctor will prescribe me anything to ease the pain, enough, so I can get to appointments, funerals, weddings, etc.
They're afraid I'll become addicted to "pain killers".  -  All I want to do is be able to get to important occasions, at this point.  As it stands, I doubt I will see my kids graduate high school and college, in June.

At 44 years old, I feel my life is over.  Let's face it; I can't walk around topless and I can't bear the pain that fabric touching/rubbing against my skin causes me.
Over the last six months, I've had to cancel dental, physician and dermatologist appointments.  The burning is just too intense, and I don't have the strength or bravado to endure it anymore.

Thanks again for your response.

I hope you had a wonderful Holiday,

Denise
Helpful - 0
714589 tn?1229696794
Hi,

I have gone through almost the same thing you have described for years. I have been to over 7 Demotologists and 10 Allergists and been tested for every known illness to man. I have tried every med they have and got no results.  That is till about a month ago.  I came across a video about a food additive called Aspartame.  The video is called " Sweet Misery".  This additive is in over 6000 of our food products we consume everyday.  Do you use any sugar substitutes? Do you chew gum? Do you drink or eat anything with "No Sugar Added, or Sugar Free" on the label?  

This additive, Aspartame, is a technical word for  Methonal.  Methonal is a neurotoxin.  The same toxin that is found in the Black Mamba bite and the bite of the King Cobra.  Once this Methonal enters the body it goes straight to your intestines and turns into Flomaldihyde.  Yes the same thing we embalm the dead with.  Then that is converted into Formic Acid that goes straight to the brain and suppresses Saratonin in the brain.  There are 92 "symptoms" associated with Aspartame.  

You can do a yahoo or google search by looking up the word Aspartame and you will learn more about this poison and all the 92 symptoms that go with it.    I have stopped using any product with Aspartame in it for over a month now and I feel great.  I don't take allergy meds anymore.  I have no more itching, burning skin, no hives or Angeodema.  

I am not saying this is your problem or that this is a cure for you, but I do think it may be worth a shot for you. Check the labels on all your food and discard anything with that word for 30 days and see if you feel better.  The worst that will happen to you is you miss out on some junk food, bu the results may suprise you.
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Avatar universal
Hi,

Glad the post was of some help to you.

Let us know about how you are doing and if you need any other information.

Post us about what your doctor advises.

Regards.
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Avatar universal
Again, thank you very much for replying.

I will ask my husband to pick up the calamine lotion and one of the oral antihistimes you mentioned.


   RE:  "Reconsult with your skin specialist if your symptoms still persist."

I've been doing this for the past several years, because the symptoms never go away.  They tell me to go to a psychiatrist, who can prescribe medication, that will block the "pain/burning sensation from reaching my brain".
Ironically, I was on the stuff for Chronic Fatigue and the symptoms still occured.


I will let you know if the lotion and oral antihistamines work.


Thanks again.

Have a wonderful holiday!

Denise
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Avatar universal
Hi,

Washing the areas with fresh water several times daily, staying in an AC environment, avoiding sun exposure, Maintaining good personal hygiene and lose comfortable clothes should help with your symptoms to some extent.

Calamine lotion should also help to some extent with the burning sensation.
ou could take some oral antihistamine medications like cetrizine or loratadine Do not use any cosmetic products.

Reconsult with your skin specialist if your symptoms still persist.

You should read this and let us know if you need any further information.

Regards.

Helpful - 0
Avatar universal
Thank you so much for your reply.

My concern is not the itching.  I only itch, once in a while.  It's the relentless burning, from the waist up, that has me on the brink of insanity.  It's not localized to certain areas.  My neck, shoulders, torso, back and front are on fire.  The burning does not come in bouts or cycles.  It's been with me 24/7 for the past few years.  I've noticed that the symptoms have increased over time.  It didn't start this severe.
The last Dermatologist I saw gave me Cimetidine.   It didn't do anything to relieve the burning.
The lesions are very few (two or three on the should, a couple on the back, etc.), but my skin burns whether they appear or not.  That's why the doctors have a difficult time believing that I'm in so much pain.  -  If they can't see anything, they can't treat me.

My stress and anxiety are a result of the pain.  I'm confined to my bedroom, because my skin cannot tolerate anything touching it from the waist up.  (I wear a soft sarang loosely around me).

I know that Calamine lotion helps with itching, but would it do anything for the burning?  (Whether the lesions are there or not?)

Thank you for the links.  I really appreciate you taking the time to respond to me.

Denise
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Avatar universal
Hi,

You are suffering from a condition called Dermographism.

'Patients with simple dermographism are asymptomatic and require no therapy. Recognition of the problem, avoidance of precipitating physical stimuli, reduction of stress and anxiety are important factors in medical care. Also, scratching because of dry skin can be reduced with good skin care and emollients. H1 antihistamines are the drugs of choice.'

You need to wash the areas several times with fresh water. Do not use any cosmetic products at the sites.

Apply calamine lotion at the site of the lesions and see if it helps. You could take some oral antihistamine medications like cetrizine or loratadine. You need to maintain a good personal hygiene .

Anti-itch drugs, often antihistamine, may reduce the itch during a flare up of eczema, and the reduced scratching in turn reduces damage and irritation to the skin.

You could read about the condition at the following links -

http://en.wikipedia.org/wiki/Dermatographic_urticaria

and

http://www.emedicine.com/derm/topic446.htm

You should read this and let us know if you need any further information.

Regards.
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Avatar universal
P.S.  -  I don't know how "Shooting firearms" got into my Tags, but I don't see a feature here to edit my post in order to remove it..  

Sorry.

D.
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