Healing through diet?

[traciekat]

Hi, my name is Kat and I an new.  I am 42 married with 2 kids.
Had a blood test negative for Sjogens but another  test showed inflammation. I have had chronic fatigue for years, very dry eyes and mouth plus IC. I am pretty sure that I have sjogrens based on all this, have lip biopsy coming up. It is good to finally have some answers to what is wrong, thought for years it was in my head!
Have any of you found any particular diet helpful? I take flaxseed for my eyes for years, all of the sudden it's not working as well, my eyes are so dry! Simalson drops help but I am constantly needing them...also, anyone else with bad fatigue?
Glad to find such a helpful board thank you!

[Cricket]

Welcome to Sjogrens forum!

If you search topics you will find a wealth of information here on almost any topic.

I am sure someone will be answering your questions soon!

Many of us suffer from fatigue and dry eyes and mouth.  I use Genteal Eye drops and take Evoxac for dryness and get good results with it.

[Sleepy In Seattle]

Going gluten-free has helped me a lot, but it doesn't help everybody...the only way to know is to try it. I know that soy and dairy are also common triggers, but they don't seem to bother me. It helps to get a referral to a nutritionist to help you figure that stuff out.

Lots of people have had good experiences adding various vitamins and supplements - some of the more common ones are Vitamin D (have they tested your D levels? Sometimes people need prescription-strength D to get up to normal blood levels, but then can maintain them with regular supplements...), niacin, magnesium, and Omega-3's.

I've now heard of lots of good experiences with curcumin - the active ingredient in Tumeric - you can get capsules to supplement, or cook with lots of it. There's also a supplement called "Zyflamend" that seems to work well for me - it has tumeric and also a lot of other "natural anti-inflammatory" stuff.

But in the end, if you have an autoimmune disorder, it's really important that you work with a Rheumatologist and probably take some medications (like Plaquenil) to control the disease. Make sure your doc knows what supplements you are planning on taking - some of them are VERY DANGEROUS for people with over-active immune systems (echinacea, Chinese mushrooms, garlic - basically anything that stimulates your immune response). It's not just about feeling better - it's about protecting your brain and internal organs from being ravaged by the disease. Diet and supplements can help, but I'd be really skeptical of any claims that you can manage this sort of disease with diet and supplements alone. It can be quite dangerous, and you don't want to mess around.

I hate taking medications, and I am very inclined to seek "natural" treatments - and that's fine - but I have seen what this can do to me (and others), and I am simply not willing to go against doctors' orders and risk that. So I really see the diet and so on as complimentary to the "regular" medication/treatment, not as an either/or situation.

I hope some of that helps....

[traciekat]

Thank you Cricket, I will try the drops you mentioned.
Sleepy, thank you for all the helpful information too. My Vit D was very low and I am now on a supplement. Tried Gluten Free also on my quest to feel better, I should give it another try.
I am going to look into the supplement you mentioned too. I really want to treat this naturally but I did not know that herbs such as echinacea could be dangerous- thanks for the warning as I use that one off and on for years.
I hate drugs, they scare me and really don't want to take anything and actually when I have tried drugs in the past (such as antidepressants) they make me feel very ill. I hope that I can treat this naturally- how do the anti-inflammatory herbs help? Do they make you feel better and more energy?

[Sleepy In Seattle]

They make me less achy - but don't do much for the energy level. The only thing that has helped with that, sadly, is Plaquenil - and it has been WONDERFUL, with almost no side effects. I understand not wanting to take drugs - believe me - I am soooooo suspicious of the whole pharmaceutical industry - but this can be a dangerous disease and sometimes the best solution is not always nice. Plaquenil, at least, has been around for a very long time and has lots and lots of data. It's actually more benign that a LOT of over-the-counter stuff that gets sold these days. And it can make a HUGE difference in your health and longevity.

[cargillwitch]

I also have opted to this point to use lifestyle and diet modifications to manage.

I am gluten and dairy  and soy free. I have been vegetarian for 27 years.I am not sure that this has assisted with dryness but it has controlled my IBS really well.

I exercise daily, can't do the 3 hour cross country runs like I used to to but I can hike 2 hours most days.It makes a huge difference in my moods( anxiety and low level depression) as well as helps me sleep better. If I miss it for a few days the fatigue and muscle aches and stiffness get markedly worse.

I take several herbs I grow myself, valerian for days ( usually premenstrual ones!) when sleep or anxiety issues arise.
I have found magnesium for constipation is amazing! It  has also helped  immensely with muscle aches and migraines.I take it staggered throughout the day.

I take flax seed oil drizzled over veggies or in my own salad dressings. Just make sure you get a good quality variety stored in a refrigerated space.

Many people have found plaquenil helpful but I think many believe it " slows the progression of Sjogrens" no studies have confirmed this for sjogrens . Many people subjectively feel less fatigue  but unfortunately the actual disease process is not  altered from control groups not on plaquenil.  I have questioned several doctors including rheumatologist on this point and all have confirmed it.It does seem to have fewer very dangerous side effects- that we know of- than many immunosuppressants often prescribed but  permanent visual changes can occur.

If you are are a highly motivated person and feel right working with herbs and dietary/lifestyle modifications, do what feels right FOR YOU.
There is a board at " Daily Strength" called "curing autoimmune and mimics" that has some  food for thought on this issue. I am unsure I am 100% in agreement with all the suggestions, but once again, there is power in feeling fully informed of all the opinions out there so that you can make your best decisions.

[traciekat]

Thanks Sleepy for the information on that drug it is very helpful!
Cargillwitch- I went and check out the forum you suggested, wow lots of stuff to research- thank you so much! I actually LOVE herbs, take black cohash, aloe (for IC) peppermint for my tummy parsley and ginger. Hope that I am not taking anything dangerous, concerned by what sleepy said about some herbs. I do take flaxseed but the capsules, I am finding that I need more and more to help my dry eyes.
Exercise is very hard, I do try to get out with my son and stroller, feel very tired afterward and need to rest. Worked out at a gym consistently before kids and that helped tremendously even though I was fighting the fatigue then too- now I am even more tired then before babies so it is more difficult. 
I am amazed that you hike 2 hours a day, I can not imagine feeling that well but perhaps if I pushed myself a bit more I could do better, sometimes even cleaning the house is a huge effort!

[Sleepy In Seattle]

I should say too that I have Lupus as well as Sjogren's - the symptoms overlap so much, and it's hard to say whether the Plaqunil is helping the Sjogren's or the Lupus....if all you have is Sjogren's, you might not see as dramatic a difference with the Plaquenil.

And yeah - I absolutely agree that you have to do what's right for you.

As for some herbs and so on being dangerous - basically, with both Sjogren's and Lupus, your immune system is over-active and is attacking your own body....so STIMULATING the immune system can lead to worse symptoms.

Here is a good article on this subject: http://reasonablywell-julia.blogspot.com/2011/01/vitamins-supplements-and-sjogrens.html

In the end, you'll know what helps or hurts - but your doc can probably help you at least avoid things that might harm you.

[traciekat]

Interesting article, thanks again sleepy. I never really paid attention when hearing how dangerous herbs could be in the past but now knowing about the autoimmune condition makes me feel more cautious. I really appreciate you posting this!