It seems almost like EVERY symptom could be SJS. It kind of drives me crazy...because I wonder if a symptom is related to SJS or not. Anyone else bothered about this? ex: upset stomach? sjs related or just dairy or just whatever...
Yes, I just don't know when to take something seriously. I get lots of heart palpatations and chest pain to the point where I think I'm having a heart attack but its never anything other than my vasovagal syncope syptoms. If I were ever to have a real heart attack I'm not sure if I'd ignore it or not.
Hi Billydude
I read about your symptoms with your heart palpatations and chest pains. I have major heart palpatations when my thyroid is getting low on thyroxin. My doctor increases the level and my symptoms are much better. I think chest pain goes with the disease. I do not have it all that much only when I do exerting work.
Wally
The stomach upset is part of the disease. I think it is usually medication related, as it feels like I am eating fire some days. My doctor gave me some medication that helps with the lining of the stomach. It put the fire out. Much more plesent to live with.
Hope this helps
Keep curis'n
Jazza
Hi Wally :)
Sorting symptoms out is never easy, that's why if a new symptom occurs it's important to check it out with a doctor. NOT everything is SjS related. There are loads of symptoms we can have that other people can have and they don't have SjS.
Even sore joints are not always SjS related. My rheumy thought mine were but it turned out that my knees and shoulders have osteoarthritis so SjS meds were never going to sort them out whereas surgery remains a good option.
Take care - Scottie :)
I have been having such strange things happening with my body for so long. I usually don't go to the doctor unless I can't live with it. They don't usually have any good answers. Now that I know most of what I have been experiencing is from sjogrens and the doctors know .I still don't get any good answers. Gosh it does amaze me how much is sjogrens related. I'm so fed up with it I'm blaming it for anything bad now.
Hi Wally, like the others have mentioned, I too think that there are a lot of things that aren't SJS directly related, but it it'll take some strong doctors to figure out what is SJS or not....I sure don't envy them!
Hang in there Louise! I hope it get better for you soon!
Take care y'all -
Patze
My rheum actually warned me to be careful about doctors blaming everything on SJS once they find out I have it. He said, "If you go to the emergency room, they'll say 'Sjogren's' right away. Trust your instincts and push for more care if you need it."
That said, I can never tell what's up with me. Flare? Flu? Virus? Injury? Sjogren's? Bah.
It definitely makes it difficult to dx other disorders, ask any of my doctors. Is my low blood count do to poor kidney function or Sjogren's, are my chest pains Sjogren's or a coronary problem and the list goes on and on.