No food will fix this

[SjoGirl]

Hi,

Had a great visit with my rheumy. Thank god she Dxed me originally and stuck to her guns even after Hopkins said I did not have SjS (because lip biopsy was negative). I started generic plaquenil in January and told her I'm getting my life back.

Having heard an alternative practitioner speak about diet and supplements this past weekend, and having tried that route but it not controlling symptoms, I asked her thoughts about using such alternative treatments. I don't remember the precise words, but she said something like this is your body attacking your body at a cellular level, there is no food (or supplement) that is going to fix this.

Before anyone who used food and supplement to control SjS throw a brick bat at my doc, please know that she said this gently and with care in her voice. She's all for taking good care of oneself through healthy diet and exercise. I think she is just saying there is no magic diet or vitamin that will make SjS go away. 

[Joe S.]

I have not found any thing to make Sjogren's go away. With time, management techniques, and supplements I have found remission. My remission is fragile. A simple glass of tap water makes it go away.

[Cindy]

AI are here to stay, they dont go away, upplements, diets, and medications help you manage the symptoms only. I have not tried diets but I like supplements I think they really help.

[jazzlover]

She's all for taking good care of oneself through healthy diet and exercise. I think she is just saying there is no magic diet or vitamin that will make SjS go away.

-
True. But I have found help with the moisture problem and with energy by eating organic and doing everything in my power to eat healthy, keep chemicals away from me, etc. It's helping. I take tons of supplements that I can't do without or I crash.

[tamaran17]

Sjogirl,
my rhuemy said the same thing and added that if i wanted to try supplements and it worked to go for it. i've got a great combo that seems to be working for me. Hopkins, huh? My rhuemy is over at Mercy 

[Sooki]

I agree.  I have tried diets and supplements pretty thoroughly.  There are things that help a lot.  I would be much much worse off without them.  But I still need my meds <3.  And the AI doesn't go away.   My hope is that I can delay any increase or required substitution of meds with lifestyle changes.

[Sleepy In Seattle]

I agree - and my doc has a similar attitude. There's no cure for this stuff - supplements, diet, or otherwise. 

However - the medications alone only get me so far - taking supplements and eating a gluten-free, dairy-free, modified-"paleo" diet ABSOLUTELY makes me feel MUCH better than medications alone - and I think probably keeps me from having to use a more aggressive medication regime.

I'd estimate that medications get me about 60% of the way toward feeling well...the diet, supplements, and getting enough exercise and sleep are the other 40%. I wouldn't want to do without either of them!

My doc's attitude on diet and supplements seems to be "check it with me - if there's no medical reason NOT to try it, then go ahead and see if it helps" - so I do! If it helps, I keep it - if I see no difference, I get rid of it.

It's nice to have a doc who is sensible and at least OPEN to trying "natural" stuff....and understands that only I can say if something works or not. We are the only ones who know our own bodies! 

[jazzlover]

I agree - and my doc has a similar attitude. There's no cure for this stuff - supplements, diet, or otherwise. 

However - the medications alone only get me so far - taking supplements and eating a gluten-free, dairy-free, modified-"paleo" diet ABSOLUTELY makes me feel MUCH better than medications alone - and I think probably keeps me from having to use a more aggressive medication regime.

I'd estimate that medications get me about 60% of the way toward feeling well...the diet, supplements, and getting enough exercise and sleep are the other 40%. I wouldn't want to do without either of them!

My doc's attitude on diet and supplements seems to be "check it with me - if there's no medical reason NOT to try it, then go ahead and see if it helps" - so I do! If it helps, I keep it - if I see no difference, I get rid of it.

It's nice to have a doc who is sensible and at least OPEN to trying "natural" stuff....and understands that only I can say if something works or not. We are the only ones who know our own bodies!

SAME HERE!!! I agree with your statements and  my Dr is the same way also.

[SjoGirl]

Hi all and thanks. I agree with all you have said and am eating clean, taking some supplements such as iron, etc.
Like all of  you, I believe the combination of these actions + meds make living a life possible. I've come to realize that after a year of hoping for some magic bullet natural cure that would make this all go away.

This is a wonderful site thanks to all of you for sharing.