New to Sjorgens, a few questions
Posted , 12 users are following.
Hello all, 32 year old female who's new to this forum. I was recently diagnosed with Sjorgens syndrome, though I think I've had the symptoms for about 8 months. I live in Japan, so it's difficult for me to get information from local doctors. If any of my questions have been answered elsewhere, I'd be really grateful if someone could point me in the right direction!
Has anyone else experienced swollen/puffy dry under eye skin? My facial skin in general has been dry recently, but I've noticed the skin under my eyes has been looking particularly terrible, and doesn't seem to be responding to moisturizers etc. I'm finding it quite distressing as it's really aging my face.
I've been trying to find out about lifestyle changes I can make, does anyone have experience of symptoms being alleviated by diet changes or supplements?
Thanks in advance for any information you can give me.
2 likes, 45 replies
diane03050 shari10176
Posted
I am new too I have been diagnosis with Sicca Syndrome I was shocked I know something has been happening for months. My bloodwork neg no matter what I am tested for. I went to Oncologist yesterday. They were going to order a Bone Marrow. The Rheumo Dr wanted it. The Oncologist said no It is Sicca you have It is also that I have POLYMYOSITIS Which equal Sjogren's Syndrome I am suffering with really dry bad throat and mouth, eyes and ears no wax. Plus I use moisturizer all the time y whole body doesn't work. Red rash on face for awhile.I am new but got made something wasn't showing up anywhere no matter ENT Rheumo. and GP Dr's
lily65668 diane03050
Posted
Hi Diane,
Sorry to hear you're having a bad time. Just out of interest, was the rash all over your face or in specific areas?
diane03050 shari10176
Posted
shelia22921 diane03050
Posted
lily65668 shelia22921
Posted
I agree, Shelia. That's why I asked the question. Diane, did a doctor see the rash? This is indeed one of the classic signs of SLE. It's another AI condition in the same group as Sjogren's, and the two conditions sometimes overlap.
diane03050 lily65668
Posted
lily65668 diane03050
Posted
Hi Diane,
I don't have lupus myself, so don't know the details. However, I believe it is normally on the basis of a blood test plus having a certain number of symptoms. I'd suggest you google the Lupus Research Institute for more information.
I'm wondering whether any of your doctors have ever seen the butterfly rash. Most knowledgeable doctors would immediately start testing for lupus if they saw that.
There's also a lupus forum on this site, which you might find useful.
I hope you can soon find some answers.
diane03050 lily65668
Posted
yes my GP today and Rheumo the other day they saw a pic I had taken it when the rash started They I can't type right now They said not that kind of rash they thought it was allergy rash I give up I am twitching so much right npw it is so hard to concentrate on not twiiching
lily65668 diane03050
Posted
Hi diane,
My personal experience is that paradoxically, it's better not to try to concentrate on not twitching. I find that if I do that I end up concentrating on the twitching itself, which then makes it worse. During twitchy episodes I find it's best to try and distract myself until it wears off.
aitarg35939 diane03050
Posted
I'm with Lily, Diane: the more I think about twitching, the more I twitch. There's now scientific proof that when we think of muscles in a particular part of our bodies, they "fire." That isn't quite twitching in folks unlike us, but it shows a direct connection between thoughts & muscle action.
It takes practice to ignore those twitches, I know. Additionally, you might try one of these new TENS-like over the counter things. Aleve makes one & so do some other outfits. They sell them alongside pain patches, maybe call them muscle simulators or relaxers. They make our muscles jump a bit by mechanical action. Using one of those anywhere might at least provide distraction when things are at their twitchiest.
diane03050 lily65668
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lily65668 diane03050
Posted
Don't forget that at least half of GPs (this side of the Atlantic anyway) have either never heard of autoimmune conditions or firmly believe they're imaginary. Sometimes we have to keep gently insisting.
Megheart shari10176
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Oh that is very distressing Shari and you are only 32. It's quite amazing the variety of symptoms which patients get and although I haven't heard of the 'bags under the eyes' in relation to Sjögrens it's entirely possible. I would like to say that it may improve but have no evidence to suggest that it will or won't. Cheerful aren't I?
At the outset of my Sjögrens my hands became very thin, bony and old looking beyond my years. Unfortunately they haven't changed, however the thing in your favour is that you have been diagnosed very quickly compared to myself (8 years) and most other SS people.
Please keep in touch as this is a great site for asking any related SS questions.
deidra40034 Megheart
Posted
just was reading your response to Shari...about your hands becoming very thin and bony. So far you are the only other one that I have noticed say that. Mine too have done the same thing! As a matter of fact all of my rings just fall off my fingers, even rings that I could barely get on or off for years! I now have to have made smaller, even my wedding ring that has been snug for 40 years . I have been wondering what the heck has been happening to my hands! I was just thinking it was the prednisone making the skin so thin looking.
shari10176 Megheart
Posted
Thanks for your reply. I'm really hoping the swelling goes down but it's already been 5 months with no change, it's actually the most upsetting symptom for me right now.