Is There A Simular Team/group Like This For People With Sjogren's/Sikka Syndrome?? | MyFibroTeam

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Is There A Simular Team/group Like This For People With Sjogren's/Sikka Syndrome??
A MyFibroTeam Member asked a question 💭

My mom suffers with sjogrens syndrome, and I was wondering if there is a group she can join for support

posted July 31, 2018
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A MyFibroTeam Member

I have sjogrens syndrome along with fibro & a handfull of other conditions. I really havent looked for a specific support group for sjogrens. If your mother would like she can email me.

Liz Tench
(Email address can only be seen by the question and answer creators)

Sjogrens symptoms are very agravating. She needs a good Opthamologist for the dry eyes and a good dentist for the mouth & teeth issues. Sjogrens can make you suseptable to tooth decay, gum damage, sores in your mouth, etc. I'm not sure if its related to sjogrens (it probably is) but I get sores on my tongue & it will burn (like i've scalded it on something hot).

gentle hugs for you & your mother.
LizzyT

posted July 31, 2018
A MyFibroTeam Member

I too have sjogren's syndrome and fibromyalgia and yes the symptoms from one merge with the other which makes it confusing and the doctors don't listen either. My doctor is only interested in sjogren's syndrome even though he was the one who diagnosed fibromyalgia so I just get on with it. Luckily I am able to get disability benefits so I don't need to worry about work.

posted May 13, 2020
A MyFibroTeam Member

@A MyFibroTeam Member unfortunately it won’t let me see your contact info. And your mother sounded amazing!!! :) how wonderful!!! I too am blind in one eye from theglaucoma. Took my vision at 23 but I didn’t know family history at the time to prevent it. I now know some history so far I’m linking glaucoma bi polar fibromyalgia and Sjögren’s syndrome together....and RA which I have too. I’m 29. I sound much older. But it’s SOOOO nice to have ppl who understand. Last night I could tell my partner was having enough of me always being in pain. Imagine being us! Right?! As I sit with my heating pad. .... hugs to you.

posted August 2, 2018
A MyFibroTeam Member

@A MyFibroTeam Member OMGosh, all of these conditions must go together, along with several others. I also have glaucoma (luckely its still in the beginning stages) along with several conditions. Our bodies are attacking themselves. With all of the conditions that we have to fight & the conditions that these cause the one I fear the most is the glaucoma and loosing my sight. I grew up with a wonderful Mother who was an albino and was legally blind. I am one of 12 siblings, I'm the youngest girl & next to youngest sibling. We could not have asked for a better or more loving Mother. She worked in a factory before she & my Father married and raised my 4 half siblings as if they were her own and then she & Dad had 8 more. She did not let her eyesight affect her personal life or her family life. She played the guitar, sang, an avid reader, gardened & worked in the yard with Dad, she & Dad flipped houses after he retired & a lot of other stuff. Oh & she was the best cook that I've ever met. Everyone loved her food! Even though I witnessed her strength, courage, faith & success and I know that I have those same charactoristics in me I still fear going blind. So I see my Opthamologist at least twice a year & he monitors me closely and I follow his instructions very carefully and turn it over to God.

Please do contact me. My email is (Email address can only be seen by the question and answer creators) and my phone/text is (Phone number can only be seen by the question and answer creators).

Gentle Hugs,
LizzyT

posted August 1, 2018
A MyFibroTeam Member

@A MyFibroTeam Member I suffer from same syndrome. And have glaucoma and fibromyalgia. If you ever want to talk I’m here. It’s really crappy and is killer on my eyes.

posted August 1, 2018

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