Hello, everyone. I stumbled across this forum just the other day. After joining, I received several comments and appreciate the welcome. A bit about myself: I was diagnosed about ten years ago. My biggest issue is bone crunching fatigue along with the dry eyes and dry mouth, joint and GI issues.
I blog about Sjogren's syndrome on Reasonably Well and have found several great sources of information to share on my site. I would like to add a link to this group as well. Can you share with me what you've learned and experienced here? It seems to be a very positive and supportive group.
Welcome! We are pleased to have you with us! You write a very good blog, I enjoyed reading a few of them! Please feel at home to add them to our blogs if you like. Just please look over the few rules we have here on the group, you can find them on the main page.
You seem to hit it on the head with fatigue, joint and GI problems and the dryness. For the women, add female problems, I'm not sure if the men suffer problems with their reproductive organs or not, I am unclear on that one. Some suffer from urinary, or lung problems as well. Since this is a systemic autoimmune disease, it attacks every cell, so nothing is safe.
Though these conditions were basically undiagnosed until a car accident that I could never get over, I can look back and see this at my heels all of my life. Relating to others here has allowed me the hindsight to see it!
One of the questions they are now asking at each visit to the Rheumatologist is if we had growing pains as a child and even go as far to ask if our mothers did! So hopefully this will allow for earlier diagnosis and treatment.
If there is a specific area of interest, you can use the search engine at the top right of the page, and it will give you a list of every discussion on that topic.
SK it is interesting that some rheum are asking about growing pains. I had rheumatic fever when I was 12 and wonder if this was the beginning for me. In my late 30’s they thought I had lupus and this limited some of my treatment options for the heavy menstrual bleeding. Ultimately the fibroids were so bad that I had a hysterectomy. I wonder now if there was some connection to my Sjogren’s.
Hopefully doctors will learn more so they can help future patients. I just turned 63 on Monday so I doubt that I will see any great diagnostic and treatment changes in my lifetime. I believe that it is only in sharing info that researchers will learn more.
Julia I will be checking out your blog when I get a chance.
That us interesting that you mention the growing pains. I remember how crippling my growing pains were. I would just sob because it hurt so bad. I remember my dad rubbing my legs and arms to try and relieve some of the pain. That was before I even turned 10 years old. I was just diagnosed in May this year and I haven’t seen my rheumatologist since my diagnosis so I’m interested in what I’ll learn at my visit with him at the end of the month. I too am so thankful for this site. I’m learning so much from all of you.
SK said:
Hi Julia,
Welcome! We are pleased to have you with us! You write a very good blog, I enjoyed reading a few of them! Please feel at home to add them to our blogs if you like. Just please look over the few rules we have here on the group, you can find them on the main page.
You seem to hit it on the head with fatigue, joint and GI problems and the dryness. For the women, add female problems, I’m not sure if the men suffer problems with their reproductive organs or not, I am unclear on that one. Some suffer from urinary, or lung problems as well. Since this is a systemic autoimmune disease, it attacks every cell, so nothing is safe.
Though these conditions were basically undiagnosed until a car accident that I could never get over, I can look back and see this at my heels all of my life. Relating to others here has allowed me the hindsight to see it!
One of the questions they are now asking at each visit to the Rheumatologist is if we had growing pains as a child and even go as far to ask if our mothers did! So hopefully this will allow for earlier diagnosis and treatment.
If there is a specific area of interest, you can use the search engine at the top right of the page, and it will give you a list of every discussion on that topic.
I was diagnosed with Rheumatic Fever at 5 years old. Had a total pan hysterectomy at 23, the pathology report was a nightmare, so there you go, more dots connect! Wonder if the men also had reproductive organ health issues?
I was surprised to see your post. I have been following your blog for a year now (it's wonderful) and even spoke with you pre-diagnosis. You were helpful and I am sure you will find the same here.
I also have fatigue and never ending dry and burning mouth. Also joint and muscle pain. I was just switched to low dose prednisone. Hope it makes a difference. Cevimelene didn't seem to make much of a difference. Ugh!. I know that doesn't help you much. Just thought I'd touch base!