Would like to hear from people with Sjogrens

Posted by Meredith0903 @meredith0903, Apr 12, 2012

I was diagnosed with Sjogrens at age 23. I am now 38 and my main symptoms (aside from the dry eyes and mouth), were fatigue and numbness. Lately I have been getting concerned about cognitive problems. I seem to be more forgetful, have trouble concentrating, trouble with numbers, and coming up with solutions to problems. I feel like it is starting to affect my job and I can’t afford not to work. I have been blaming it on my constant fatigue, but now am not so sure. I would love to hear from anyone who has similar symptoms! Thank you.

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Hi, Meredith. I’m so glad I found a resource to visit with others with Sjogren’s! I’m 47 and was diagnosed with Sjogren’s and Rhematoid Arthritis a year and a half ago, but of course I had dry eyes for years before being diagnosed. I had my tear ducts plugged, taking Restasis, and use Genteal severe eye ointment and Oral Balance mouth gel at night. My eye vision is poor so I have been too scared to take the plaquenil drug, as the rare side effect is blindness. Do you take this drug and have any side effects? I take vitamins and 2000 iu vit day per day. For the last 4 years I have had constipation issues and drink Dr Millers Iaso Tea which greatly helps. Do you have this issue too?

Multiple fingers on both hands have arthritis symptoms and wake me with pain but usually only after I pull weeds in my garden or in general in the winter. I have mild tingling in hands but nothing regular…yet. During winter, I keep a humidifier next to me at all times, but I sitll wake up min 3 times a night for eye drops and 5-6 times for mouth Oral Balance gel or a drink. Just recently, fatigue has been overwhelming where I can’t stop thinking about taking a quick nap. And now my face has painful acne fluid-filled sores — which is nothing like the blackhead/whitehead stuff in my earlier years. Do you or did you have this acne problem? I also noticed that I have memory issues but didn’t think it was related to Sjogren’s. Perhaps it is. I work full-time (at home) on a computer all day.

The memory, acne, and fatigue symptoms are all happening so fast and regular now, I think I need to see the doctor again and re-evaluate my need for plaquenil. The Advil regimen alone isn’t working anymore.

How fast did your symptoms progress from 23 to 38? How are you today? What meds are you taking? So sorry you were diagnosed with this at such a young age. Were you a sickly child?

My parents both chain smoked and I had tonsilitis/strep continually. I don’t drink or smoke. I had bronchial and sinus infections alot in my 30’s and 40’s. I’ve had the flu twice where I was hospitalized; since taking the flu shot, I haven’t gotten this anymore. I also had viral meningitis when I was 29; I think that is what spurred my decline in health. I’m really hoping for NO NEW SYMPTOMS. UGH@~! @meredith0903

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@powerofpositive

I was Dx with Sjogrens last year, Sjogrens primary-cutanious b-cell lymphoma ?secondary. Also RA and …., I’m 54, Had intense eye & thirst issues since @2006. Fatigue indescribable,off and on,then always & ever increasing with sleep and pain isssues, etc. I no longer work. Miss it, but am finding and revisiting hobbies. I have noticed now that the world wind of the last year is slowing down (Diagnoses, 2nd opinions, Chemo (talk about a fog) ego maniac physicians, major problems with my medical records…which I advocate to others now to obtain on an ongoing basis…it is amazing the errors over and over ’cause they copy off each others notes, 9why sit there talking to them…they obviously were’nt listening) miss quote you, ommit issues brought up etc…..! Sad state of affairs and may the heavens help us all if electronic medical records goes national…with the errors in my chart, like cardiac surgery in my 20’s that never occured it is insanity at best. And I’m not alone, the more I speak/advocate for this, so many others have horror stories. All that said. The fatigue has improved alot from where it was, stress, anxiety and depression post diagnoses/treatment added a different dimension to the fatigue. But it has improved. Sometimes we can be hard on ourselves Fatigue surely affects the cognitive process to varying degrees. Is there depression? Some adjust easily to chronic illness, others not so much. Talk to your Rheumy ( and get the records), try to sort this out. Could be a few issues compiled. Oh, I had issues with numbers prior to diagnoses/treatment but not now. Fatigue? Sjogrens? Pain? Who knows?

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Why would this sjogrens ‘wing’ at a metropolitan hospital include oncology? I understand the other related docs like rheum and opth.

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