I was just diagnosed with Sjogrens this week. Thankfully, I recently changed doctor's and he quickly recognized my symptoms were connected to Sjogrens. My previous medical provider discounted everything I said, even when I said, "could you test me for Sjogrens." So, three years later I have the answer. I have the chronic dry eyes. I've tried Restasis, but they don't help much. Occuvite has been my saving grace when it comes to the eyes. I can deal with all the joint pain. It's the chronic fatigue I am struggling with and have been for so many years. Does anyone have any suggestions on how to deal with the fatique? No one in my family really understands this, so I don't have a lot of support. I would appreciate any encouraging words I can find on this site! God Bless and stay strong!
Sometimes the only thing I can do is take to my bed. After working as an election judge from 5 am to 9 pm, it took me two days to feel something normal. Some days after lugging around groceries is too much. I haven't yet found a way to explain it to anyone. I just take care of myself.
Welcome NEWLY DX'D,,
Most people don't understand. They think that you certainly look well. Are you still able to work? It's a true blessing that you were able to find a wise enough physician to actually diagnosed you correctly. That's a task all within itself. It appears that you may have a decent doctor. What area are you from?
I’m also dealing with the fatigue. I have realized that I need to put myself first (not easy), and limit what I do (severely). I’m making some changes, such as having groceries delivered. I’m attempting to return to work next week after two months off. I’m nervous about how this will go with the fatigue. Just remember to put yourself first (easier said than done).
I do work full time and just picked up a part-time job evenings, so I'm working 12 hour days which is extremely difficult. But I have to push through and do it as I am a single income home. My family gets upset with me when I bow out of an activity of some sort. There are days I just don't have the energy to do more than what I have to do. I am blessed to have found this doctor. He wants to conduct a sleep study. He is thinking I may have sleep apnea which may have brought this one. I am hopeful though. I'll be seeing the specialist in the next week or two so I'm praying we can get some of the symptoms under control until I'm able to complete the sleep study. I am so glad I found this group. Just knowing a few people understand is so incredibly helpful!
I understand completely where you are coming from. I was diagnosed with fibromyalgia about 20 years ago after 3 years of going doctor to doctor and trying so many different meds that it gave me bleeding ulcers. I was diagnosed with Sjogrens a couple years ago along with Reynauds and mild lupus. I never know what is causing what symptom anymore as they are all similar at times. With the weather change lately my joints and back are the worst and the fatigue really gets me as well. Thankfully I have a very understanding husband of 44 years who never questions why I’ve spent the day in bed. He just knows it’s because I need to sometimes. These support boards area great place to meet others in the same boat. Goodluck hon!
Thank you angelwing. I am very frustrated. My daughter kind of looked and laughed today when I tried to explain this. The fatigue alone has just about done my personal life in. I just don't have the energy to do much more than work. I need the support of those living with this because I'm finding not too many people know anything about this.
When I was first diagnosed with fibromyalgia I had to get a book about it to give to my family doctor, who I was working for at the time. Lots of doctors didn’t even think it was a real condition, just temporary sore muscles. I wish! When my regular doctor moved and I had to find a new doctor the first thing I asked him if he was familiar with fibromyalgia and my doctor now said he had even taken a special course in its treatment so I knew I had found the right one. I go to a rheumatologist every 4 months too. Most people don’t know what we go through on daily basis and until they walk in your shoes for about a month they never will. People ask how I’m doing and most of the time I just smile and say fine. If I’m hurting they can usually tell anyway. I used to own my own art gallery but after 10 years I finally had to give it up. I just wasn’t able to be on my feet enough during the day to keep it open. I really miss that.
I'm not trying to insult anyone's loved ones. I just KNOW that KARMA is REAL. I was the person that said Fibro. isn't real. I always said it. I thought it was just another way for the Pharmaceutical Companies to rip people off. I so didn't believe it was real! Then KARMA came & kicked me in the butt real bad. I'm a living testament. Guess who God had to teach a lesson. So, I see and understand both sides. Please feel free to share this reality. Karma is REAL! Now, I feel uncomfortable b/c I look pretty good unless I get REALLY sick. I have learned a life long lesson. I judge nobody for nothing. I don't know their life's story.But, I feel fear for people that don't think I'm sick. I know that Karma is a bitch!