I Was Diagnosed with Sjogren's Syndrome

H., I have a friend who was on so many medication for Fibromyalgia and still was in so much pain. She has been on a great Nutritional Supplements that has helped her so much, she is off most of her meds with her Doctor advise. I will be happy to connect you with her and let her share her results.

Blessings,

A.

It is an autoimmune disease and these are all related to your genes. You really need to be screened for celiac disease, which is very, very common for folks with any other autoimmune disease. Some research shows that it's actually the untreated celiac disease that is the reason we develop these other autoimmune diseases. And, both celiac disease and autoimmune thyroid disease (Hashimoto's) are very, very often the cause of Fibromyalgia, which is really a constellation of symptoms and not a disease per se. So, I can't urge you strongly enough to get tested. I was diagnosed with Hashi's, Raynaud's and peripheral neuropathy, fibromyalgia and the list goes on. A gluten free diet and treatment of my thyroid (with replacement hormone) has resolved the majority of my FM symptoms. There is actually a DYI test available from this lab: www.enterolab.com

H.,
I do not have any info on Sjogren's, but I have fibro & I am in an awesome fibro support group + I have started a natural treatment with amazing results. Please e-mail me & I will share with you the info.

Oh man, I am sorry to hear of your diagnosis. Well, sorry and glad for you at the same time!! I am sure you are like me and have suffered for years! That said, I have been diagnosed with fibromyalgia as well as recently I finally was told I have autoimmune thyroid disease (Hashimoto's). But I also learned that all of this is caused by an intolerance or autoimmune reaction to gluten. I would encourage/beg you to do some research to see if you too could be suffering from gluten intolerance (celiac disease)! Your immune system is attacking your own body, and you need to find out the reason. I am at the very beginning of this journey, and still have more definite testing to do, but would be happy to chat more if you wanted. Do look into it though and see what you think! Best wishes to a better health future for you!! ~A.~

Hi H.,

I don't have experience with Sjogren's or Fibromyalgia, but recently ran across these websites while doing research for one of my clients -

http://www.wearefibro.org
http://www.patientslikeme.com
http://facetofacehealth.com
http://www.dailystrength.org
http://curetogether.org/Sjogrens-Syndrome

They're all "social media/health 2.0" sites where patients connect with each other. I didn't look into any of them in great detail, but though I'd share in case you want to connect with some others online.

Good luck.

S.

I have a dear friend who was diagnosed with Sjogren's a couple of years ago. If you'd like, you could send me a private message with your email address, which I could forward to her and put the 2 of you in touch.

A. from Dallas, TX, please do share the supplement! That might be something all of us could find helpful!

I am sorry to hear about the fibro and SS. I don't know anything about SS, but have Fibromyalgia and have suffered for almost 8 years. It took them over 1 year to diagnosis me- after seeing several different types of drs and going through very painful procedures, only to put me on pain meds, tranquilizers, muscle relxers and sleep meds. I did that for 3 years with no real improvment- I then sat in on a presenation by an herbalist- it changed my life. within 6 months I was off my meds completely and in remission. I have had to go back on meds several times, during extreme stress, but again am in remission.

I watch what I eat- went on a gluten free diet for 1 year- take several different types of herbal supplements (Natures Sunshine is a great company), exercise three-five times a week, see a chiropractor and do yoga/pilates/meditate.

I know western drs. will tell you fibro is immuno stuff- and they might be right, but they don't really no. The chriropractor has been one of the biggest helps (I think if I had seen one when I was first diagnosised I would have saved myself years of medicine fog), and the exercise. I had to start slow- at first I couldnt' even walk to the mailbox whereas before I showed symtoms I was hiking 2-3 miles and rollerblading up to 8 miles two times a week. I am now back to walking 1-4 miles and rollerblading 5 miles in 30 minutes or so. I had to start with water aerobics and not push myself, walking to the mail box, then halfway around the block, then the whole thing.

Get a support group, seek alternative medicines/therapies- see a counselor if you need. But take care of yourself and don't give up. Feel free to contact me, and I would be happy to talk with you and support.

There is an internet site with support groups for all kinds of illnesses and problems called Dailystrength.org. I have gotten lots of info and support for rheumatoid arthritis and Sjogren's syndrome. Check it out - I hope it helps.

Hi H.,
My name is M. C. and I have been working with clients
with SS and Fibro for over 15 years.
I own Aqua~Fit Swim School & Wellness Center in Plano.
Our clients find that for the dry mouth that chewing gum helps and always having healthy drinks available.
They exercise in our warm salt/mineral pool that is kept at 88 degrees. Many of our clients come to our slow and easy class that works on range of motion, core and flexibility.
The exercise helps to manage fatigue, pain as well as working muscle groups.
Here is one of the Fibro Support Groups that some of our clients attend:
http://www.meetup.com/North-Texas-Fibromyalgia-Support-Gr...
If I can help you in any way please feel free to contact me.
Best of Luck
M. C.
Aqua~Fir Swim School and Wellness Center
1400 Summit Ave D2
Plano TX 75074
____@____.com
###-###-####

While I do not know what Sjogren's Syndrome is I may have a BIG help with your fibromyalgia. I have been using products in my home that are fantastic. I have friends who swear that they help with all of their allergies and pain ailments. If you would like to get more info, call me ###-###-####.
I wish you the best!

I see that you are getting some great responses. I can only add two things. To get some of the best facts from the medical community (e.g., the Mayo Clinic) try their site at: www.mayoclinic.com.

Some diseases defy medical explanation based on a genetic reaction to something. Seriously consider looking at what you're ingesting: Get rid of things known to be bad for many people (aspartame included) and then look at things suggested by your responders (gluten free diets, etc).

Best of luck!

Hi, I also have Sjogren's, in conjuction with another autoimmune disease, Reynaud's. Although I have the antibodies in my blood, I don't have any of the symptoms-dry eyes, etc. I think the other posts were helpful-I'm sure connecting to an online support group is a great idea. I did research online when I found out that I had it and it helped assuage my fears.