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#24498 - 05/31/09 02:16 AM why does it hurt so much??
kmotto2002 Offline
Member

Registered: 10/29/08
Posts: 32
Loc: Wisconsin
I have EHK and I would LOVE to know why it hurt so much. My total body hurts, it's fragile, and I just want to curl up and sleep away the day. I know I don't have an infection (no fever and no blisters to speak of). This happens every time the weather changes. I just want to know why it hurts so much!

Just needed to vent to someone OTHER than my wonderful husband who has no answers for me.

Kelly

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#24499 - 05/31/09 08:32 PM Re: why does it hurt so much?? [Re: kmotto2002]
Glori Offline

Member

Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
I have EHK and I feel the same way...I am miserable! A big part of it is the stress it puts on your skeletal system, the skin pulled tight over your joints. My doctor once asked me what the pain was like and I said it's like wearing a suit of broken glass. Everything touching me hurts and where nothing is touching me it still hurts.
Sometimes, it's just nice to flat-out complain!

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#24500 - 05/31/09 10:17 PM Re: why does it hurt so much?? [Re: Glori]
MamaH2 Offline
Member

Registered: 11/27/08
Posts: 77
Loc: Virginia
ugh...that breaks my heart. is my daughter feeling that way too? she's to little to talk yet and she cries a lot but not abnormally. is it always like that or are you comfortable sometimes. what can i do to help her be more comfortable?

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#24501 - 06/01/09 12:01 AM Re: why does it hurt so much?? [Re: MamaH2]
Glori Offline

Member

Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
Hydration is my mantra...I have a humidifier in most of the rooms in my house and frankly, a lot of these new super-greasy body butters bring me some relief. I am using an olive oil body butter that helps out.
My other trick is that I have given up on being fully clothed all the time. No, I am not running around naked, but I am a lot more comfortable in loose pajamas than in clothes that seem to pinch and bind EVERYWHERE! Frankly, clothes just hurt!

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#24504 - 06/01/09 04:01 PM Re: why does it hurt so much?? [Re: Glori]
snackmom Offline
Member

Registered: 01/29/08
Posts: 39
Loc: mechanicsburg, PA, USA
My son is 2 years old with EHK. He occassionally tells me "ow mommy, booboo hurt". But I usually hear the "itchy here" phrase. If he seems to be moving a little more uncomfortably than normal I will give him some tylenol or motrin to help a bit, but I am not sure if it does much for him. But I agree with keeping hydrated and moisturized.

I also agree about the clothing hurting. I am a stay at home mom and let him (and his nonaffected older brother) run around in their PJ's all day long. He actually calls most types of clothing "jammies" smile. If we go out I get him dressed in regular cloths, but as soon as we get home those come off and the "jammies go on"!

Christine


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#24513 - 06/03/09 09:11 PM Re: why does it hurt so much?? [Re: snackmom]
Lauren Offline
Member

Registered: 10/14/08
Posts: 47
That breaks my heart too......my 1 year old baby with EHK didn't seem have pain. Is pain coming later life when she gets more older? or will get better with age? Is everybody who has EHK has same pain? May be possiblely my baby can has NO pain?

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#24516 - 06/04/09 11:33 AM Re: why does it hurt so much?? [Re: Lauren]
Glori Offline

Member

Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
I will say this, I certainly don't remember my skin hurting this much as a kid, but I didn't have it "everywhere" like I do now. For instance, I didn't have permanent marks where my clothes touched me, that took years to develop. I think by my twenties, when it had really settled all over my body is when it just got to be really painful.
Now, if I sit too much, when I stand up it feels like my skin is being ripped apart along the backs of my legs. I have always enjoyed yoga, but now the stretching is just too much. I am stiff and sore most of the time and when I first get out of a chair I hobble a lot. While I am only 39, I move like an old lady most of the time!
To get to the point, for me, it was something that came on as I got older and has gotten worse with time.

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