My Introduction to Sjogrens World

[forest]

Hello Everyone! Let me first say thank you for the warm welcome everyone has shown me!

I have been reading the forums for a while, but I was hesitating to sign up because I am still struggling to get a diagnosis. One of my favorite hobbies is to complain about how terrible I feel, so I am not sure why it feels so awkward to post this.

I started feeling that something was wrong around 1999, and I suddenly realized that I had to pay more attention to my health. With some effort, I managed to quit smoking. I gained some weight which was expected, but I also grew very fatigued, puffy-looking and I could not remember anything. My TSH was 8.0 (.35 to 5.0 normal) and I was put on thyroid hormone. My levels returned to normal, but the fatigue and weight remained.

Since then, I continue fighting extreme fatigue, tingling in my hands and feet, sleep problems, terrible headaches, back and hip pain and the list goes on...

In 2005, I suddenly became ill with Ulcerative Colitis which would not respond to medication. I was rushed into emergency surgery just in time. Although "cured" of the UC, I continued to have abdominal problems. After a year of trial-and-error I found that I was "allergic" to cows milk. Allergists say that I am not allergic to milk, but I don't think intolerant is the right word either due to the severe reactions that I have to it.

Around 2007, I went to the optometrist due to occasional blurred vision, and was told that I had dry eyes. I wasn't too concerned (it didn't sound bad), and I didn't connect it with any other symptoms at the time.

Recently, I was finally able to present my GP with a problem that couldn't be ignored. My saliva glands started to have mild but consistent swelling with no known cause. He handed me a paper with two likely possibilities, Sialadenitis and Sjogren's Syndrome.  I had basic blood tests done, but no inflammation or infection was found. I am currently waiting to receive an appointment with an internist, and I hope that she will pursue Sjogren's further. My GP said that he suspected Sjogren's, and agreed that although the tests were negative, it did not completely rule it out. Now I am seeking the additional proof for the diagnosis.

The biggest frustration for me is the extreme fatigue, and waking up tired.

Thanks for listening... and for being such a friendly group!

Scott

[Bucky]

Hi Scott,

Nice meeting you last night in chat.     I see you found your way to the forum.   

I, too, have issues with my thyroid being outta whack which caused extreme fatigue.  Have they checked your thyroid recently?  It can fluctuate in a short amount of time.  They have had to up my meds. several times.

Just wanted to again welcome you.  There's lots of information here on the forum.  If there is something in particular your looking for, type it in the "search" box and it will take you to threads with that information / discussions in it.

We also have several men on the forums, so don't feel totally outnumbered by us women - I'm sure someone will pop in and say "hey".

Take care,
Bucky

[lynnmarie219]

Hi Scott!


I just want to add my welcome to you....and I hope that you find the information, support, and friendship that is found on these boards and in the chat rooms useful and helpful!

You sure do have a lot of symptoms that sound familiar that you have been dealing with over the years and I hope you get some answers as well as some treatment to help you with them! Keep us posted on how you re doing!

[forest]

Thanks Bucky. Yes, my TSH last week was .34 and a couple of months before that was 1.4 which is good. For the first couple of years after going hypothyroid I was working with my GP and endocrinologist to try and feel "normal" again but could never do it. I tried various doses, and I even tried T3 hormone as well with no results. I finally gave up and went back on thyroxine. Over the past year my fatigue has been getting noticeably worse. I did find a natural supplement that gave me my energy back, but I started having some kind of reaction to it so I had to stop taking it. I am now just as bad as I was before. My pending appointment with the internist is giving me new hope at least.  

Scott

[forest]

Thanks lynnmarie! 

The last 10 years has been a struggle for me with seemingly unrelated problems, but after reading the forums things are starting to make sense. I appreciate the reply!

[irish]

forest, Welcome to our world!!! You need to ask your docs to check your thyroid antibodies---the antithyroperoxidase blood work. There is also another test but I can't remember it now. I have hypothyroidism and was diagnosed with the Hashimotos or AI thyroid disease several years ago. When my TSH and my antibodies get high I get so many symptoms and I always forget that they could be related to the thyroid. I get the beyond extreme fatigue, body and joint aches, sore, stiff achilles tendons and other tendons in body hurt also plus the darn brain fog. Sometimes I can hardly walk and almost got a walker last year---went and got a TSH and increased by med and improved.

Also, I am sure you have read that you can have seronegative AI diseases of any kind including the sjogrens. Also, my hubby has celiac sprue and microscopic colitis and is lactose intolerant. He gets really sick when he gets too much dairy. He can cheat some but if he starts eating dairy regularly he gets diarrhea so bad. I knew a guy that was sick for months and passed blood, had the cramps, etc. Diagnosed finally with lactose intolerance. Quit the milk product and got better.

Hope you can find the answers to many of your problems. Good luck and let us know how you are getting along. Irish

[jonnell]

Hi Scott Welcome to the forum.  My name is Jonnell and my 4 year old Jenna has sjs.  You might also want to make a appointment with a Rhumy as sometimes they will treat the symptoms of sjs without positive blood work for it.  This is a wonderful place.  You will make some friends and get a lot of help.   Good Luck

[forest]

Thanks Irish. I was tested for Hashimoto's when I was first diagnosed but it came back negative. My Celiac Sprue test did as well. Perhaps I should get retested now that some time has passed? I get terrible skin reactions when I take milk, which is why I suspected my problems were allergy related. Enzymes don't help much unfortunately so I just have to avoid it. I may never know why I can't take milk, but I am thankful that I figured it out because taking it out of my diet has stopped most of the cramping.

Scott

[forest]

Hi Jonnell.

Although my GP suspects Sjogren's, I got the impression that he didn't want to focus too closely on one thing given my medical history. I will definitely ask to see a Rhumy if I don't get referred there from the internist. It doesn't seem fair when people get sick, especially children. I hope Jenna is doing well, and I am glad that both of you have the support of the forums.

Scott

[kimbo]

Hi Scott and WELCOME,

I hope you do find a good rheumy, to further understand and treat SJS.

I have had ulcerated colis or colitis, diverticuli,and IBS my rheumy seemed to tie that in with SJS.

Also recently hypothyroid. I believe SJS just seems to kick a lot of things off balance.

There are lots of good days for me and flares once in a while. Sjogrens and its many characteristics, seems to affect us all a little differently and at different time interval of symptoms that flare by surprise.

Glad you found us and please make yourself at home.

blessings, kimbo

[wednesday mc haggis]

Hi Scot

welcome to the forum.

yup seemingly unrelated conditions sounds so familar, im a nurse and just didnt like, my dry eyes of 30 years, with fatigue, IBS, dry skin , ear infections and tinnitus and hearing loss, actually reading up on SJS was a relief, to fit the jig saw peices together

glad you found the forum, you ll get such great information here, and tips on coping, dcos, and meds, take care and enjoy the forum

T x 

[irish]

Scott, We have 3 sons and they all have symptoms of AI disease but don't want to get diagnosed yet. Denial is a wonderful thing!!! Anyway, the youngest was losing weight, abd. cramping and looked just like his dad did those many years ago when he got sick. I finally told the kid to see a doc and get it over with. He saw GI and they did testing, scoping, etc and no diagnosis. Son kept on with life and just didn't do well and the downhill spiral was obvious. Finally started the gluten free diet and he gained 10 pounds the first month.

He has not got the diagnosis for celiac and he really doesn't care as he feels better. He has some sjogrens picking at him also. The bottom line is that intolerance to gluten can cause problems also and IBS is often the word used when all else fails. You may find that doing a gluten free diet makes you feel much better.

It is so much easier to eat gluten free these days as there are more and more companies producing gluten free products to meet the high demand for these products. Go to  http://www.celiac.com and you will find all sorts of info about gluten free foods. You really don't have to order much cause there is so much in the stores now. Do watch the canned soups, etc..  Also, when you look at the labels you will find the listing of ingredients and if you arn't sure call the 800 number and ask if the product is gluten free. This also includes medications. Good luck and hope you have good results from your doc. Irish

[forest]

Thanks kimbo, wednesday and irish! I will definitely speak to a rheumy as soon as I can.

I am surprised how common Thyroid issues and IBD/IBS are with Sjogren's.  It does really tie my scattered medical history together. I am glad that I found a place where people completely understand what I have been going through. Thanks for sharing your experiences, it really helps.

Irish... I did have a test for celiac which was negative, but I certainly feel better when I don't eat breads. I have been limiting my intake, but I haven't tried eliminating it totally. It is so frustrating when the body's reaction doesn't match the test results. Thanks for the info on the gluten free foods.

Scott

[Patze]

Hi Scott,

Let me also welcome you to the SJS World!  Please do peruse the board as there are tons of topics and oodles of information for sure!

Sounds like you've been through the ringer!  Please do see if your doctor will refer you to a rheumy, it sounds like you might need to be seen by one to at least confirm or disagree the latest findings.

I'm with the others on having hypothyroid issues for going on four years, and IBS for better than 20 years.  If it ain't one thing, it's another!

Hang in there and please keep us update, okay?

Take care -

Patze

[KYMOM]

Scott, Welcome.  I am happy that you joined and believe that you will find helpful advice and great support from some wonderful people.  Roxanne