Patients Sjögren syndrome
Topic of the discussion
Posted on 12/21/18 5:05 AM
I have been diagnosed with Sjoren Syndrome for about 3 years and yes I have the dry eye and dry mouth symptoms, but additionally I have been dealing with intestinal issues, like bloating. It has gotten pretty bad lately affecting my digestion and lumbar pain, and sleep. I have also been feeling some burning and discomfort in my arms, like they are falling asleep and then it begins to feel like a pulling sensation until I rest my arm on something.
I feel also at times that I like tore a calf muscle because it is always in pain, but I actually had a scan done and it showed it was fine.
I also lose my words or forget what I want to say.
Hoping someone can reassure me about my symptoms or at least help me understand and support me in my acceptance of my disease and body as it is because I am often tired, alone, and feel bad being like this.
Thank you for reading.
Beginning of the discussion - 12/27/18Sjogren's Syndrome... stomach issues, pain, forgetful? anyone https://www.carenity.us/forum/sjogren-syndrome/symptoms-and-complications-of-sjogren-syndrome/sjogrens-syndrome-stomach-issues-pain-forgetful-anyone-642
Posted on 12/27/18 3:00 AM
I also have dry mouth and dry eyes
Posted on 12/28/18 1:37 AM
@Hidden username thank you! The dry mouth and dry eyes are tiring and exhausting in themselves, but the other symptoms compiled just makes it that much worse! How are you holding up?
Thank you for your response.
Posted on 12/28/18 1:42 AM
I am holding up. Christmas time was really nice. It was just my husband and me..I dont mind.
Posted on 1/3/19 7:19 AM
I hope your holidays went well. Since my mother passed away, things are not the same. I pray i can get into a support group.
Posted on 1/4/19 7:40 AM
Sorry to hear about the struggles everyone is going through.
I too get the dry eyes and the constant low grade fever is exhausting to me.
When I have a flare my friends can tell because I act “drunk”. My speech is confused and impaired. My texting is horrible, and I struggle to do basic things because I lose focus.
Good luck everyone.
Posted on 1/6/19 12:17 AM
Please read my post on systemic lupus.
I think it may help many of us.
Feel free to comment and remember: All drugs have side effects!
Always mickey aka mqm
Posted on 1/22/19 11:43 AM
I don't know how to do this anymore I am so depressed because of the pain I am in and to make matters worse, my pain doctor discharged me because I didn't come in for a pill count even though I gave his office manager a gas recipient showing that I was in Tennessee I don't understand THIS!!!!! So now I am detoxing off of my pain meds. I SERIOUSLY BELIEVE I AM GOING TO HAVE A HEART ATTACK !!!!! My ex husband who was my best friend passed away 4 months ago and he was my rock our 12 year old son sees me like this and I am so scared I am going to die on him from this detoxing. I understand that pain meds have a bad rap now but I have a disease that has NO cure!!!!! So what?? NOW THE DISABLED PEOPLE WHO ARE IN PAIN HAVE TO SUFFER FOR THE BAD!!!!!! THESE DOCTORS PUT US ON THIS MEDICATION AND THEN COLD TURKEY TAKE IT FROM US????? PEOPLE I AM SO SICK RIGHT NOW MY CHEST HURTS AM AFFAID THAT I AM GOING TO DIE FROM THIS!!!!!!
Posted on 1/24/19 1:29 AM
Sounds to me like u need to find a new doctor
meantime get yourself to the hospital
don’t know all details but u need to find a medical connection u can trust & also they trust u.
Posted on 2/26/19 10:33 PM
Although it's almost impossible I agree - find another doctor.
I suffer from sjoren's syndrome and have my entire life, seriously. The pain was so bad I felt as if my inside was turned out and the exposed tissue/muscles were throbbing and aching in excruciating pain as well as total exhaustion - literally. I was constantly seeing doctors who ran the same tests, specifically looking for lupus & rheumatoid arthritis which were always negative (for years).
In 2011 my dear daughter was diagnosed with Lupus (17 years old) and sadly ended up in a wheelchair, to date. I guess social disparities is an issue even at the best hospital in the Houston Medical Center. After examining my daughter in ER the doctor discharged my her. He missed an important detail, she could not feel her legs and was unable to walk. Invaluable time wasted. It was then he was asked "what about my legs". Everyone is entitled to errors but that's difficult to accept when a person's life/wellbeing is at stake.
Well, it was my daughter's rheumatologist who diagnosed me in 2012 with sjoren's syndrome. Apparently, I had every symptom of lupus and why I was tested for that however the disease was dormant and the reason the results were always negative.
Unfortunately you're not alone. I do wish you all the best.