HealingWell
Search Close Search
☰

Sjogren's and Rheumatologists

Support Forums
>
Sjogren's Syndrome
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/9/2012 1:21 AM (GMT 0)
Hi all, new here and hoping to find support and give some of the same. Currently very frustrated with rheumatologist's attitude (for lack of a better word, Brain Fogged out right now). Because I'm post menopausal, my doctor is minimizing symptoms that I report of Sjogren's. He has added "post menopausal disorder" to my diagnoses of Positive ANA and Sjogren's Positive SS-b. Was diagnosed just this past April. Am taking Plaquenil and Imuran, plus Relafen for pain & neuropathy/neuralgia.

Would just like to get to know more Sjogren's sufferers and share experiences as I'm really struggling. Have made a hard decision to retire early from my job due to multiple symptoms, including increasing cognitive issues.

Thanks!
Posted 12/10/2012 4:10 PM (GMT 0)
Hi Gilda,
I'm new here also and it seems to be a pretty quiet place. We sound a lot alike and I'd very much enjoy talking with you if you'd care to do so as well. I heard the same thing your doctor told you for years and my husband and I both knew it had to be something else but we had no luck in the metropolitan area where we live.

I too was diagnosed just last April but have had the symptoms for at least 25 years. Back then they thought it was PMS. If it was, I had the worst PMS anyone in the world could have. lol

I'm on my way to the eye doctor now but will be back sometime today if you'd like to visit.

No Sjo
Posted 12/10/2012 9:13 PM (GMT 0)
Hi New Sjo, thanks so much for answering!! Do you have a personal email address that we could use or are you on Facebook? I belong to a FB group called Sjogren's Warriors, mostly women, and it is helpful but I find not many will answer long questions at time, on a personal basis. I'll look for you here again if not. Too bad there are not many Sjogren's Folks here!
Posted 12/10/2012 9:30 PM (GMT 0)
I bet you know Cammie. :)
Posted 12/11/2012 10:12 AM (GMT 0)
Dina, do you have a confirmation/diagnosis on the Gastroparesis? Just curious.
Posted 12/19/2012 8:10 PM (GMT 0)
You deserve a better doctor, so start looking for one that can help you. Donot go back to this doctor, hes not worth your time or money. A good doctor will listen and help you. I got lucky to find a good rheumy my first time, he's worth it. Hope you can find a good doctor soon, many well wishes and keep us posted we do care...
Posted 6/7/2013 5:49 PM (GMT 0)
Hi I'm new. I was diagnosed with Sjogrens in 1980. I don't have a Rheumatologist, but from all I have been reading I think I need. I have learned a lot from reading all the input you all have provided. I also suffer with hypothyroid, fibromyalgia, connective tissue desease and Bipolar disorder. I have bad ringing in my ears sometimes it's so bad I cannot sleep. It never occurred to me that my sjogrens could be causing my dizziness, and nauseous feeling. I also am very sensitive to sun light If I stay out in the hot sun I get physically ill. I have to go to bed. Is this a symptom of sjogrens? I hope to continue to learn more as I read your posts.
Posted 6/10/2013 5:40 PM (GMT 0)
Welcome to our forum Nana+4. As everyone has said, there isn't much action on this forum. We get many patients who have secondary Sjogren's with other autoimmune diseases (connective tissue disease) as their primary diagnosis. Lupus is my primary disease, but I have so many Sjogren's problems that I bought The Sjogren's Book by the Sjogren's Syndrome Foundation. I try to research issues presented on our forum.

I think everyone who has autoimmune diseases should be seen by a rheumatologist. If you don't like the first rheumy you see, try another until you get the "right fit."

Ringing in the ears occurs more frequently with Sjogren's. It also occurs more often in Sjogren's patients with anxiety and depression so it's sometimes treated with antidepressants or antianxiety meds. Most patients are able to live with it, but if you can't see an ear, nose, throat doc who can discuss tinnitus (ringing) maskers.

This is just a guess, but I think your sunlight issue is from your connective tissue disease. My sunlight reaction is from my lupus. I  don't have any severe hearing problems, but I have plugs in my tear ducts and use eye drops and gels without preservative. I also use Biotene toothpaste, Oral Balance gel at night, mouthwash without alcohol and builds enamel (ACT), and xylitol candies. My mouth gets so dry that my lips stick to my teeth when talking. It sounds funny to anyone listening, so I just laugh about it. I hope you see a rheumatologist and an ENT if necessary. Let us know how you're doing! Love, Butterflake

Posted 6/11/2013 8:43 AM (GMT 0)
Hi all im new to the forum also, its good to hear other people's symptoms of Sjogrens. I got dx in April of this year after 15 years of feeling ill, the doctors thought it was SLE at first but have said due to my RO and LA anti bodies they say its Sjogrens. I have very serve joint pain, fatigue,headaches, brain fog :) muscle cramps, stomach pain, inflammation round the heart, nausea, rashes and low moods and i feel like a balloon!!!!
I don't really suffer with dry eyes, but they can get itchy, i have never had a lip bio, and only get dry mouth at night. I take plaquine, tramodol, coodamol and naproxne anti inflammatory. I also am not sure about my rhemuy, they just seem so matter of fact when telling me what the illness means. I was told its not that bad, but i feel awful all day everyday! its effort to get up out of bed because everything hurts so much and i just want to throw up all the time. Is my rhemy right in saying its not that bad of a disease? cause where im lying im just near to giving up!
Posted 6/11/2013 7:08 PM (GMT 0)
Oh Purplelion! You poor thing! If your rheumy says Sjogren's is not that bad, he doesn't know jack about Sjogren's and you need to run to another rheumy. A physician should listen carefully to you and have compassion. 

Like lupus, primary Sjogren's can effect the respiratory tract, GI tract, kidneys, liver, nervous system, and of course all the mucus membranes. I don't want to scare you (just tellin ya how bad your doc is), but about 5% of primary Sjogren's patients develop lymphoma which is cancer in the lymphatic system.

Just because you have positive RO and LA antibodies doesn't automatically mean SLE isn't your primary disease.

Plaquenil takes a few months to begin working, but if you've been on it for ages talk to your new rheumy about other meds you can try. Ultimately, once you find the right meds for you, your pain should decrease and fatigue improve. Tramadol works best when taken with Tylenol. I take Tylenol Arthritis.

I also take anti-depressants and anti-anxiety drugs because for me, depression is unbearable. Please feel free to drop in any time, even if it's just to vent. Love, Butterflake

Posted 6/15/2013 8:02 AM (GMT 0)
Hi Butterflake, thank you for the advice, i dont feel as thou people listen to me when i say im in so much pain. Im going to see my rhemy next month and will let them know im not happy with the support. I feel like im just left to deal with this and shouldnt really complain. The more i can learn about the illness the better i will be able to explain whats happening to me. Thank you all for being honest and open about your personal journey its invaluable information. Stay blessed and beautiful. Xx
Posted 7/25/2013 1:49 PM (GMT 0)
@purplelion - I think any disease on the Social Security Disability list of disabling illnesses is pretty darn serious.

My disability was approved partly for Sjogren's. It's noted on my letter from Social Security.
✚ New Topic ✚ Reply