What a day yesterday

[NYRicanmom]

Yesterday my daughter and I went grocery shopping....ok, she was like the past few days in pain, back, hips, knees, head & stomach....ok, while entering the store she complained of severe stomach pain, omg this pain lasted for hours which it never happened bfore, anyways, while in the hospital cuz she couldn't walk they had to carry her in, the doctors and nurses where asking her questions, she said to them well, I have ss and fibromyalgia. they were like oh we know ss only causes eye problem, I was like, WRONG!!!! it also causes joint pain and stomach pain etc......its like people don't believe us about how much pain she goes through, i'm fed up trying to explain hospital staff about this condition......oh this is a military hospital which they don't do no "real testing" to find out if anything else is wrong with you. they just give you some meds and off you go.

[Scottietottie]

Hi

It's really demoralising when medical staff know so little about Sjogren's. I've had the same kind of thing said by more than one doctor. I think they must just skip over it in an afternoon at med school and if they've missed the 'lecture' - they've missed it. Even out of the specialists, only a few seem to have specialised in SjS.
I hope your daughter's stomach pain subsided. Did you find out what was causing it?

Take care - Scottie

[NYRicanmom]

Her GI thinks she may have Crohn's Disease.....waiting on some blood work and new tests. Its spread everywhere in her abdomen.....It went into remission (ss & fms) but it came back lasting longer the pain....she lost 5lb already from thurday 1/29th to today....everything she eats it comes out

[Scottietottie]

Hi 

I have two friends with Crohns disease. They don't have SjS as well thankfully. They were really ill before they got a dx but once the problem was identified, they got it under control. It takes a lot of willpower though. I worked with one of them. She was on a totally liquid diet for about 6 months. She was amazing - very sporty - kids loved her. For being on a liquid diet she had an amazing amount of energy.
She got back onto solids, got married and had had a baby.
The other friend didn't develop Crohns until after she had 2 kids. She went onto to have 3 more kids because the Crohn's went into remission every time she got pregnant. I've lost toch with her now cos she moved and I don't know how she's doing.

I hope you get the answers you need soon.

Take care - Scottie 

[wednesday mc haggis]

my friend has it too, she was diagnosed after a year and got terrible stomach pain and vomiting, she swears by digestive enzymes food supplements that help her break her food down quicker, and ive went onto them for my IBS and it does help, thinking of your both and hope she gets better quickly , have to say now my firned takes enzymes, cut out gluten and spiced foods, she is pretty much fine on a day to day basis, as long as she dont stress, hope this helps

T x