Re: PAIN

[Guest guest]

Cherie,

My heart goes out to you! I too have back damage that is inoperable

and will have to live with the pain for the rest of my life. I too

must work for a living, and have fibromyalgia, and it's SO SO hard!

I'll keep you in my thoughts and prayers.

Kathy K.

[Guest guest]

,

I'm in the same boat as you and Cherie. What type of agencies did

you look up that might offer people like us some assistence? i'm

still trying to work a couple of days a week, but it's just not

enough to pay the bills, and the pain is so bad that I too have been

breaking down and crying.

Thanks,

Kathy K.

wrote:

> Without going into what I had to endure at length, I want to

encourage you to start thinking ahead to other possibilities.

[Guest guest]

Dear Shanna, I guess you must be getting a lot of replies to your questions - which in my opinion is a good thing. I have had EN for about 7 years. En coupled with uevitis....so you can imagine. EN is painful believe me and the more one tries to force oneself to do work the worse it gets. Rest is the best. Because few people understood what was wrong with including myself, I was forced to do a lot of housework and hard work for that matter. Most members of the family I was staying with thought I was just lazy because I was tired all the time. The nature of my job also dictated that I be on my feet for long hours. Im a journalist by proffession. So I had swollen feet all the time..the area around the ankles would balloon to levels where I wold actually feel numb. In short Im saying your daughter should get the necessary rest. Hope she gets better soon. Love FAITHshannayoung_2000 wrote: Hi all, Well since it is my daughter who has the Sarcoid and En I have questions. I hope more than one of you will respond so that I have a wider opinion base. I think sometimes my daughter (shes 8) uses her leg pain to get out of doing things she doesn't want to do. So I guess what i want to know is how painful is EN? I mean on a scale of 1-10 ( one being good 10 being bad) So how bad is your flare ups?? Say on a "light " flare up is is tolerable?? She is still currently having flareups weekly. Some days its worse than others and I can alwys tell by checking out her legs if she is having one or if shes not, but if she is having a slight flare up is it really painful for all of you or is it moderatly. I don't want her to have

to do too much if she really is in pain but I don't want her to use it to not put the dishes away or go to school if it is something she can live with. I realize that everyone is different but maybe if I can get a median answer than I can know what to do better. Thanks for all of your info support and help Shanna

[Guest guest]

Hello Shanna,

I to am late in responding. I was going to respond in the beginning but it was on a work morning so didn't have time that morning. The descriptions was just how I felt. It also has taken me so long to get my feet back into regular shoes. I have a hard time finding shoes now that don't hurt my feet. When I first went back to work I found a very lightweight pair. I've finally found some airwalk shoes that are doing the trick finally. I remember telling co workers I wouldn't even wish EN on a ex husband not even my worst enemy. I also remember telling people it hurt worse then giving childbirth. I know all of us women can relate to the pain of childbirth so the mom's that have children in that aspect can imagine the pain involved. I was so very fortunate to not have kids at home when I got EN. I do have grandkids and my grandaughter would find my lumps all the time. I couldn't even pick up my grandaughter while my EN was active.

Anyhow I hope your daughter recovers soon as all of us here that has EN knows the pain of it and I would imagine its so very hard to see your little girl in so much pain.

Shelia