Sjogren's Syndrome Support Group

Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.

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Autonomic Dysfunction, POTS from Sjogren's

sjogrenspotsie
sjogrenspotsie
Anyone else here suffer with Dysautonomia, POTS and neuropathies? I have Vasculitis and am currently dealing with liver and gastroparesis issues. I was formally dx last week after my lip biopsy but POTS and Dysautonomia was what finally made Dr. s believe something was truly wrong with me after years of dismissal. Told it was only fibro, anxiety and depression. My quality of life at 39 is that of an elderly person. I am a pisitive person however and have adjusted to my new normal. Wondering if there are others like me who suffer beyond just dry eye and mouth which most people read about and think that is all Sjogren.s is. Why is it so much more to some and others. Just really relieved to have a diagnosis and a plan. It was not all in my head. Took many dr.s and.a few years to be taken seriously like many of us. Lost faith in the medical community. Lucky to have a good team now.
GailSK
GailSK
What are your dysautonomia symptoms? My rheumatologist has recommended that I be tested for that. Since I also have Sjogren's, GERD, idiopathic pulmonary fibrosis and a host of other issues, I read about it and decided I didn't need another diagnosis of another incurable disease to worry about. I'm still wondering whether or not to go for the diagnosis. I'm already just scared that I don't have much life left since I have the lung problems and am on so many meds now that I'm just a dizzy, jittery wreck! I'm 64, by the way, and even I feel too young for these diagnoses! I'm sorry you're starting so young! I will keep you in my thoughts.
sjogrenspotsie
sjogrenspotsie
The symptoms I started with were Postural orthostatic tacardia syndrome. Esophegal spasms and difficulty swallowing. I would choke on water. I fainted with positional changes. I cant stand long due to blood pooling in my legs and hands. Severe hyperhidrosis. Inability to control my body temp. I overheat if temps are over 68 degrees but have hyperthermia symptoms if under 65. I have to wear a cooling vest most of the year if I leave home. The list goes on and on. Some overlap with sjpgrens. Dr. Believes I may have lupus too. Two cousins do and dad has chic so my jeans stink. I am also on a lot of mess. 8 right now. So glad to see a support group as nobody I know understands me. Also migraines ins is also a form of dysautonomia.
MButterfly
MButterfly
You're not gonna like what I have to say, but it can't hurt (just remember that, k?). You really should get your thyroid tested. The particular tests you need are TSH, Free T3 and Free T4. You need ALL of them, not just TSH.

Thyroid disease - especially Hashimoto's which is yet another auto-immune disease - can cause many of your symptoms.

I'm not saying you don't have the dx's you already have, but I'm saying if some of them are thyroid related they could be treated and possibly resolve.