Hello everyone, My name is Susan I was just diagnosis with sjogren's syndrome on Friday (10/23/09). I have to say that before yesterday I have never hear of it before. The doctors has start me on Plaquenil. I do not know a lot about this syndrome or the medicine, any help or words on knowledge would be very helpful .
Some of the problems that I have are very painful Swelling on different joints of my body ( especially on my hands and feet). Dry mouth, some eye problems, headaches, cavity, I feel like I need to sleep all the time but I have a hard time going to sleep at night . There is more but these are the big ones. Also I have hashimoto's thyroiditis I know this for 2 years now.
Sorry I know this is all over the place I do have a question I get hives a lot especially after exercise and a lot of pain, so it make exercise almost impossible. Does anyone have this happen to them.
Welcome. There are others on this site that have hashimoto's. that can help you with your questions
Welcome to the group! This is a great place to get/find information and converse with others with SJS.
I am also a "fairly" newbie having been diagnosed March 2009 after 6 years of being shuttled around from specialist to specialist. I was finally diagnosed at a teaching hospital and would recommend those to anyone. I hope you didn't have to go through a bunch of drs before finally getting diagnosed like most of of have. ::) I was told everything from "it is probably something she go from her cat (didn't have a cat then) to "I am pretty sure it is some kind of cancer but you are not presenting the right symptoms,etc for it." So my SJS diagnosis was somewhat of a relief finally.
I was diagnosed w/underactive thyroid back at age 21 (Hashimoto's). I had it for a long time prior I guess but had to go in the hospital due to a 2 week period. I just get my levels checked yearly and take a pill daily for it. Thyroid can affect a lot of stuff so I assume you are getting it checked? When 1st diagnosed I had to get checked every 4-6 mos to get my levels right. Lots of SJS gals seem to have it too.
Sorry I don't know about the hives. My symptoms are mostly tons of cavities, odd bloodwork, "allergy" eyes, easily gotten sinus infections (I now do sinus flushes that have cut it down a lot) and some bouts of fatigue. I've learned that we get "Flares" episodes of symtoms happening for awhile and then going away. Maybe your exercise causes some stress which can bring on a flare? I am on an anxiety med that if I get too sressed, I can take at night and sleep ok. Maybe something like that would help you sleep?
If you can sometime, stop in and chat - there is a schedule on when the chat is on. I am in the Midwest in Eastern Iowa. Good Luck!
Hi Susan :)
Welcome to Sjogren's world. Autoimmune conditions often seem to travel in packs, so it's not unusual to have both Hashimoto's and Sjogren's.
Plaquenil is often the first med given to combat SjS. It's what is called a DMARD (Disease-modifying anti-rheumatic drug) and can help top slow the progress of the disease, which in most cases is slow anyway. Plaquenil can take up to six months to work, however, so you have to be patient with it. (It can work a lot quicker than that)
SjS is a very individual disease and no two people seem to present in exactly the same way. It's interminable, uncomfortable but not terminal.
I'm glad you've found the forum. It's a friendly and supportive place to be.
Take care - Scottie :)
Hi Susan and Welcome to Sjogrens World!
I'm glad to meet you....just wish it could have been under better circumstances! :)
There is so much information here that you can browse through by using the search bottom on top of the page and if you cant find the answers.....just ask your question here! Someone will always be along to help you out if they have some experience in that area!
I have never experienced the hives you describe after exercise...so I can't answer to that...but maybe some others will have more info on that for you! After a lot of exercise or activity...I do get very hot and my face flushes red...but I also have rosacea which is the cause for that little embarrassing thing!
Again...welcome and know that you are surrounded here by people that understand and don't judge! So settle right in and welcome to the family!
Hi Susan,
Let me also welcome you to the SJS World and Family! As the others have already said, please do look around at the tons of topics on a wide range of subjects that you just might be interested in.
I also don't get hives, but like some of the others, I do have Rosacea, and all I have to get is warm, and it looks like I have a permanent sunburn!
Again, welcome, and hope to chat with you soon too.
Take care -
Patze
Thank you for words of wisdom. I look forward to getting to know all of you.